Emily's Adventures

New Allergy

2011-12-28T23:41:00.000-06:00

A few weeks ago, I went to see an Allergist because I had been having some "allergy attacks" that required visits to the ER and shots of meds to get me through.
I didn't know what was causing the attacks, and I still don't, but I haven't had any lately.
The allergist did want to do the standard allergy test, so I had some blood taken and waited for 2 weeks. I got a call on Monday morning from the nurse and she said that allergy test results were back and aside from all the normal things I knew I was allergic to, a new allergy showed up. I am allergic to latex. Knowing that answers so many questions I have had about my health, but it brings up so many more questions.
Latex is in thousands of products, so many that there is a website that lists things that have latex in them.
I'm going to have to start avoiding things, that up until recently I had been able to be around.

Hope everyone had a Merry Christmas!

Emily

Christmas Eve

2011-12-24T01:00:00.000-06:00

It is officially Christmas Eve. It's 12:45am, I've been awake for 36 hours. Shopping, returning clothes that I didn't use from the wedding that I went to last weekend, more shopping, and spending time with my mom. I'm so tired, but I can't help but let my mind wander tonight.
I don't remember what I did last Christmas. I barely remember what I did last week for that matter.
Being on massive doses of pain meds isn't good for the memory.
Thinking ahead to one scheduled surgery in January and another not scheduled, but going to happen surgery is going to be a hard way to start the new year. Every year since 2008 I have had atleast 5 surgeries a year. In 2010, I had 13 surgeries. This year, 2011, I've had 2 plus 8 more surgical procedures. And already for 2012 I have 1 scheduled and one to schedule.

I hope to remember this Christmas. To remember where I am in life. To remember spending time with my family. To remember spending time with my grandmother (who turns 90 in January). To remember the laughter, the smiles, the love, and remember that I have a family that loves and cares for me, and for that I am blessed.

As you go about this Christmas Eve, take time to remember the small stuff. Remember why we celebrate Christmas. Remember that little baby that was born so many years ago, a Savior who came for us all.

Fall 2011

2011-10-16T01:10:00.000-05:00

I haven't updated since May and I haven't had anything big happen.
I am still battling a several different medical issues: a bummed knee (that will require surgery to fix), degenerative disc disorder in my lower back, heart issues, frequent pneumonia (caused by aspirating, can only be fixed by surgery), severe pain problems (even though I'm on huge doses of pain meds), there is more stuff, but these are just a few things I dealing with.
I have wanted to write more, but there just isn't much to say.
All I can do is ask for prayers.

surgeron appt.

2011-05-19T21:24:00.000-05:00

I went yesterday to see my ortho surgeon who did my knee surgery last Nov. My knee has not gotten back to 100% due to my PCL tear. She had told me after my surgery that 95% of people that tear their PCL don't normally need the PCL fixed, but there is always that 5% of people that must have the tear repaired for the knee to get better and the pain to go away. Well, I have fallen into that 5% group. I am going back to the office tomorrow to see a different ortho surgeon, and all he does is knee ligament tears. I am hoping that I can schedule knee surgery within the next 2 weeks.

This knee surgery will be a BIG deal. From the research that I have done, plus what the Dr. told me yesterday the only way to repair a PCL tear is with a ligament transplant or ligament graft. I won't know all till tomorrow, but my knee won't last much longer without it being fixed.

I have other surgeries to schedule, but my knee is giving me the most issues right now.

Please pray that I can have this done soon, and I will update fully when I know more.

Still Here

2011-03-20T02:24:00.000-05:00

I'm still here. I know I haven't written in a very long time, but I've been going through some really hard issues lately. I had heart surgery in January to implant a Loop Recorder Device. It records everything that my heart does and all the rythms and heart beats.
I've been very depressed and been sleeping alot.
I'm still trying to get my pain under control, and still on a very high dose of pain meds.

All I can ask for is prayer.

Heart Surgery

2011-01-18T22:01:00.002-06:00

I am having heart surgery tomorrow morning.

I have to be at the hospital at 8:30am, and the hospital is a hour and half away, which means we are leaving at 6:45am. I don't know what time my surgery is, but all I do know is that I am getting 1 if not 2 devices implanted into my heart. The 1st one being a recorder which will montior and record my heart beats and rythmns. The 2nd device will be a defibilator.

I was suppose to have a pacemake/defib put in, but the cardiac surgeon realized that if we were to put those in now, I would never be able to get them out.

These 2 devices will be able to be put it, and taken out at a later date. If my heart shows signs that I need the pacemaker, we will put it in, but at a later date.

After having 11 different surgeries last year, I am kinda calm about this surgery in the morning, with the exception that this is my heart.

Please pray for my anixousness between then and now. Pray that my port-a-cath will not have a clog and will be able to be used with no issues. Pray for the Dr.'s and nurses as they work on my heart. Pray that nothing goes wrong.

This should be an outpatient surgery, but I am taking an over night bag just in case.

Merry Christmas

2010-12-24T22:46:00.000-06:00

I wish everyone a
MERRY CHRISTMAS
Remember that the reason we celebrate Christmas sin't to see how many toys we get and the best gifts we gave. We celebrate Christmas because that is when Jesus was born and we celebrate His birth. Jesus being born is the greatest gift of all.
I think so many of us get so wrapped up in buying gifts, giving gifts, parties, sending Christmas cards, etc; that we forget the true meaning of Christmas.

The Christmas Story: Luke 2:1-20

In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world.

(This was the first census that took place while Quirinius was governor of Syria.) And everyone went to his own town to register.
So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David.
He went there to register with Mary, who was pledged to be married to him and was expecting a child.

While they were there, the time came for the baby to be born,
and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.

And there were shepherds living out in the fields nearby, keeping watch over their flocks at night.
An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord.
This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
"Glory to God in the highest, and on earth peace to men on whom his favor rests."
When the angels had left them and gone into heaven, the shepherds said to one another, "Let's go to Bethlehem and see this thing that has happened, which the Lord has told us about."
So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger.
When they had seen him, they spread the word concerning what had been told them about this child,
and all who heard it were amazed at what the shepherds said to them.
But Mary treasured up all these things and pondered them in her heart.
The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

Port-a-Cath surgery

2010-11-04T23:27:00.000-05:00

I am having surgery tomorrow morning*Friday* at 7:30am. I have to be at the hospital at 6am, which means we leave the house at 5am, since we live a hour away. I should be home by noon, and the surgery itself shouldn't take more than 1 hr to complete. I am having a port-a-cath put it. It will be located just underneath the skin near my left collarbone. So, the next time I need and IV, instead of being the human pin cushion, they will just stick the needle in my port, and it will go directly into the line.

Tomorrow, I am also having my PICC line removed. I actually had to use my PICC line on Tues. for a blood draw. The nurse got blood without needles in less than 2 min.

My 1 concern about my PICC being removed is that the skin around my PICC line is badly blistered, red and swollen. I have been having alot of allergic reactions from all the tape that is holding the PICC line in place. It will take atleast a month for my skin to be completly healed. Please pray that my skin will heal soon and that I won't get an infection.

I will be sedated for my surgery. I am happy about that. Ihave already had my pain meds increased for this surgery and for the first time in a while, I am at the max dose for my pain patch and it alone is relieving all my pain. Even the pain in my knee and leg.

I did finally get the final MRI report on my knee and I tore my PCL ligament and I am missing alot of cartilidge from my knee. Compared to the MRI that I had done in late Aug., my knee now looks nothing like my knee then did. It is very swollen, about the size of a grapefruit. My mobility is very decreased. It hurts to put pressure on it, I can't walk very well, and my knee gives out on me atleast once a day. My knee surgery is scheduled for Nov. 18th, but more on that in a different e-mail.

I am focusing on one surgery at a time.

I would like to share something that really hit home when I read it.
" God may not be as interested in changing our circumstances as He is in seeing out circumstances change us."

Myself, and alot of other people have been praying for me (incuding you) for the past 2 1/2 years. Praying for God to heal me and for my health to improve. Well, God hasn't healed me and my health has only gotten worse, but my faith, my courage, my love for life have only gotten stronger these past few years.
I am not the same person I was 2 1/2 years ago. My circumstances have changed me in ways I never thought were possible.

Please pray for the surgeon and nurses as they work on me tomorrow. Pray for not a lot of post-op pain and for a quick recovery.

Broken

2010-09-27T02:46:00.000-05:00

How I feel:

Broken by Lindsey Haun from the movie "Broken Bridges"

Wake up to a Sunny Day

Not a cloud up in the sky
And then it starts to rain

My defenses hit the ground
And they shatter all around
So open and exposed
But I found strength in the struggle
Face to face with my troubles

When you're broken
In a Million little pieces
And you're tryin'
But you can't hold on any more
Every tear falls down for a reason
Don't you stop believin' in your self
When you're broken

Little girl don't be so blue
I know what you're going through
Don't let it beat you up
Hittin' walls and gettin' scars
Only makes you who you are
Only makes you who you are
No matter how much your heart is aching
There is beauty in the breaking
Yeah

When you're broken
In a Million little pieces
And your tryin'
But you can't hold on any more
Every tear falls down for a reason
Don't you stop believin' in your self
When you're broken

Better days are gonna find you once again
Every piece will find it's place
When you're broken
When you're broken

When you're broken
In a Million little pieces
And your tryin'
But you can't hold on any more
Every tear falls down for a reason
Don't you stop believin' in your self
When you're broken
Oh When you're broken
When you're broken
When you're broken

CAT scan update & sick

2010-08-24T02:17:00.001-05:00

I'm sorry that I didn't update sooner on how my CAT scan went, but it was a nightmare and very traumatic experience.

First off, I needed to get there at 8am, we live a hour away from the hospital/clinic, and we left late. So we got there late. I got signed in, the tech came out with my cup of barium (which I had already told the previous tech when I called to put on my chart that I would NOT drink the barium) Barium = liquid contrast. The tech explained to me that without the contrast the scan would not look good, yes I already knew that, but I physically can't drink the barium or I get very sick. So, then the tech brought me back to the IV room, and that's where the nightmare began. I got stuck 5 times by 2 different nurses. Each stick hurt more and more. By the end of 30 min. I was on a lot of oxygen because I was so close to passing out, from the heavy breathing and the pain from being stuck so many times.

So, I ended up having no contrast at all, which the radiologist wasn't happy about, but there was nothing more that I could do. But this isn't the first time this year I have had a scan with no contrast.
In May, when I had my cardiac MRI, I got stuck 9 times, all with no luck, so I got no contrast for that scan either.

For those that don't know, contrast helps to outline/ show more of the organs. The use it for special MRI's and CAT scans.

Also, Sunday night I got really sick and I still am. My fever spiked to 102.5 (103 is my limit to take a trip to the ER). My oxygen stats were really low, so I required more oxygen for most of the night.

Plus, I had been up since Wednesday with very little to no sleep at all. I slept most of the day Monday, but my fever is still elevated and I'm still on the oxygen. I haven't gotten out yet while on the oxygen, so I've had to cancel all appts. for Monday and Tuesday.

However, I have 4 Dr. appts. next week. I'm going to see my Infectious Disease Dr. , my cardiologist, my pulmonologist, and my pain management Dr.

Please keep me in your prayers as I recover from being sick, and I can get more sleep. I've also screwed up my knee again (the same knee I fractured in February). I have been really hurting and can't put a lot of weight on it. Pray that it gets better.

CAT Scan and updates

2010-08-20T01:48:00.000-05:00

I had a Cat scan of my abdomen in the morning. A test that my Infectious Disease Dr. has ordered on me so that he can find a baseline. He still/ There is still no answers to my fevers, but they have been happening for 6 months now. We have to find an answer soon. I have at least 3 surgeries to be had as soon as I'm cleared from the ID Dr.

I'm not doing well, since I had my pneumonia in July. I don't leave the house much, unless to go to the Dr. I don't drive much, and I don't drive within a mile radius from my house. I sleep a lot, I'm on A LOT of meds, mainly pain meds. I don't eat much, and my body is getting less tolerant of foods.

Last year my room was cluttered with feeding tube stuff. Cans of formula, an IV pole and my feeding machine. This summer I have no more feeding tube stuff, I have breathing stuff. I have bottles of oxygen, an oxygen concentrator that makes its own oxygen, a nebulizer to help clear my lungs, and miles of tubes to help me breathe. My oxygen numbers have been low. Normal is 95-100, mine is 80-92.

Pray that an answer to my fevers would be found soon. I need to have these surgeries soon, but only when I'm fever free or else my body will reject whatever is inserted/implanted in me.

Update on my aunt:

She got her stitches out last week. She has a big surgical boot on now. She is in a wheelchair, because she is too wobbly on crutches. She will have to be off her foot (no weight at all) for 6 months. It will take up to a year for her to return to everything that she did before her accident/surgery. Please pray that her work situation will be figured out. She works in San Antonio, and she drives a hour to work each day. She can't drive anymore. She is workng from home as much as she can, but that is still not enough.

Still Here

2010-07-31T09:54:00.000-05:00

I know it has been a while since I last wrote, but I have had nothing to write about.
I had pneoumnia 2 weeks ago, and was in the hospital for 5 days. I'm still recovering from that. I have a cough.
I'm stll having issues eating. Everything hurts when I swallow.

My aunt fell Monday night and had urgery yesterday to put her ankle back together. She now has 9 screws and 2 plates. The ortho surgeon told my aunt that her injury/break was the worse the surgeon had ever seen.
She'll be on crutches and not allowed to put any weight on it for 6 weeks.

I have some other medical stuff going on, but will discuss when I know more. Please pray for my health, my aunt, and some other issues going on.

PICC line or Central Line

2010-06-17T11:34:00.000-05:00

I am seriously thinking of getting a PICC line or central line, or some other permanent line put in becuase my veins are no longer useable for getting blood or getting IV's and with atleast 1 and maybe 2 more surgeries coming up I will have to have an IV.

I had my cardiac MRI on Tues. and they couldn't use contrast (which is what the Dr. ordered) because they couldn't get an IV started. I had 2 nurses and a Dr. try and got stuck 8 times all with no luck. Last week for my chemical stress test it took a hr to get a tiny iv started and it didn't last but 30 min, before it blew.
I had a NICU nurse who transferred to adults tell me that for 25 yrs she could stick every preemie baby, but she couldn't get a stick in me. It's very embarassing and almost humiliating that no one can get IV's in me anymore.
When I had sepsis they had to stick me in my neck because they couldn't get it anywhere else.
I've had PICC lines before and I had a central line when I had sepsis. But, what is a good line for semi- permanent use? Something that can get blood out of but put meds into. Something that is long lasting (maybe 3-6 months)?
I know that having a semi-permanent line puts me at a high risk of getting sepsis again, but it will be so much better than being a human pin cushion.

Any opinons or suggestions would be greatly appreciated.

Heart Day

2010-06-08T05:49:00.000-05:00

Today is the day that I go to the cardiologist to find out my results of my EKG and Holter monitor.
I'm also having some other issues that are probably related to either my heart or lungs or both. I'm hoping to get answers for those problems too.
Regarding my lungs and asthma, I am going on Thursday to the lung Dr. to have a breathing test done, and then right after I'm going to see my lung Dr. and get the results and see what we can do about my breathing issues and the fact that oxygen levels have been low.

Overall, I've just not been feeling well. I can't put my finger on it, but I'm always short of breath, and just not how I was before I got sepsis. I don't know if recovering from sepsis takes a long time, but considering how sick I was, maybe it does. I also know that heart and lung problems kinda go hand in hand. If you have one problem, it won't be long till you get or have problems with the other.
Thankfully, both my heart and lung Dr. 's are at the same hospital clinic, and in fact they are on the same floor and right next door to each other. They both have all the info on me, and they both can read what the other is doing or has done.
Include that my GI Dr. is also at the same clinic, and I feel for the first time safer about my medical health, knowing that all 3 of my specialist Dr.'s are located in the same clinic, and they all have access to my medical history and what the other has done, what meds the other has prescribed, and what is going on with me from another Dr.

Big Update

2010-05-31T20:45:00.000-05:00

This is going to be long, but here is my big update about everything that has happened in the past month.

First off, my surgery on April 22nd was my 5th surgery this year alone. My body was already run down, tired, and still healing from the first 4 surgeries I had.

So, on April 22nd, I went and had my surgery to insert the Spinal Cord Stimulator into my back (in between my shoulder blades) and the battery box into my right hip.Everything went great and I was home within 2 days. While at home, I had a home health care nurse and occupational therapist come out 3 times a week. Nursing wise, everything looked fine. I was also on very strong anti-biotics, just to be on the safe side.
The following Friday, April 30th, I had an appt. to actually turn the SCS on, but when I did it didn't feel the same as it did when I had my trial surgery for the SCS. So, I turned it off and called the tech, and we scheduled to meet.
I was doing well. Going places, spending time with family. But, I wasn't back to my old self.
All that changed the day of May 5th. The following night, I went out to dinner with my mom, aunt, and grandmother. We went to Chili's to support their churchs' youth group. I remember that I came home and went to bed, feeling OK.
about 3am on Wednesday I woke up feeling HORRIBLE. I started running a fever, and I hurt all over and was in horrible pain. My fever kept climbing, so at 5am, I woke my mom and she figured out how sick I was. She took me to the closest ER which is only 10 min. away. They took me back immediatly, and my fever was 106.3 . My blood pressure was dangerously low. At this point I don't remember much of what they started doing for me. I know that they ran pretty much every test in the book. I had blood work (which showed I had an infection), a CT scan, x-rays, 2 spinal taps ( I remember being awake for both, and asking to be sedated and they didn't. Those hurt so bad, more than anything else did). I remember being asleep, and suddenly being woken up because I had several bags of ice placed all over my body because they couldn't get my fever to go down. It took almost 12 hours for my fever just to drop 2-3 degrees. It took 5 days before my temp. returned to normal. After all tests had been run, they finally thought to look at my hip and back, where I had just had surgery. That's when the realized that I had developed sepsis ( a severe blood infection). I was transferred by ambulance to a different hospital, one the my neurosurgeon worked at. I had surgery exactly 2 weeks after I had my SCS put in, to take it out, and thus remove what was causing the infection. I was placed in the ICU for 4 days, and was in and out of consciousness. I remember that I would start talking in my sleep, so they would sedate me.
I was eventually moved to a regular room, and was dismissed from the hospital 2 days later.
Looking back on everything and doing research, I'm glad I don't remember much. I learned that if sepsis is not treated quickly that people can die from it and in most cases people have alot of damage and trauma to their internal organs, but I have no lasting effects.

I go back to the neurosurgeon in August to discuss having the SCS put back in. The SCS is my only way to be able to get off all these pain meds.

After I got home, my mom told me that one of the tests showed that I have a deformation on my heart, and the Dr.'s told her to get me in to see a cardiologist. I saw her last week, and she did an EEG of my heart and it came out a little off, so tomorrow I am going in to have an Echo done of my heart and to get fitted to do a 24 hr Holter Moniter test. I'll get my results in a week.

Cardio Appt.

2010-05-25T00:44:00.000-05:00

Today was my Cardio appt. and I really liked the Cardio Dr.
I had some lab work done, and in 2 weeks I will have an echocardiogram done and will also be fitted with and wear a holter moniter for 24 hrs. The holter measures my heart beats/rythym for 24 hrs.
Today I had an EEG done and it showed that my heart is not beating the way it is suppose to.
Hopefully we can figure out what is going on, because I never knew I had heart problems.

I have a huge update on the way, but please keep me in your prayers.

My New Favorite Food... OIKOS

2010-04-28T11:06:00.001-05:00

What I can eat is limited, and for the past few years my food choices have not been the healthiest or wisest. So, at the urging of my pain management Dr. I went and saw a dietitian a few weeks ago. We talked about alot of things, but the number one thing was adding more protein to my diet, for 2 main reasons. Having protein stored in your body makes it easier for your body to recover from surgery easier ( I just had major surgery last Thursday) and 2: eating high protein foods fills you up faster and makes one less hungry throughout the day. Less hungry = less eating/food = less weight to gain !!!

So, we talked about foods, that I could eat, and like to eat. First off eggs. Eggs (the whites) are high in protein. One large egg has about 12.6 grams of protein. (Side note: adult women should have about 45 grams of protein a day). I started off the first week eating 2-3 eggs for breakfast every morning. But then I started having troubles with the eggs going down (having trouble swallowing them).

Secondly we talked about yogurt. I like yogurt, and always have. But the one thing I have just recently noticed about most yogurts ( and the only brand that I would eat - Yoplait - is that there was so much sugar in them. One 6oz container had 27grams of sugar. And their yogurt was made using High Fructose Corn Syrup. Something that is very bad to eat, but is in almost everything there is to eat. Yoplait also only has 5 grams / 11% of protein.
My dietitian recommended that I try and eat Greek Yogurt. She said that is is thicker and more healthy than the regular yogurts out there. I have to admit that I was a bit thrown off my this. I have a harder time swallowing thicker foods, and it just sounded different. But, she recommended 2 different brands and reviewed the nutritional qualities in both of them vs the reg. yogurt and they were much healthier.
The first kind I tried was Brown Cow All Natural Greek Yogurt.
It was pretty good. I got the blueberry flavor and the only thing I didn't like about it was that it had a bit of a tangy taste, other than that I could taste no difference between it and regular yogurt.
A 5.3oz cup of the Brown Cow had 130 cal., 17 grams of sugar, 13 grams/26% of protein and no high fructose corn syrup.
The second kind I tried was Stonyfield Oikos Organic Greek Yogurt.
It has quickly become my favorite. I only get the blueberry, but it is delicious. I can't taste a difference in thickness at all. In all truthfulness, it tastes so much better than any of the Yoplait ever did. It tastes fresher and healthier. I guess because it is organic, and it is the only organic food I've ever eaten.
This yogurt is even more nuturious than the Brown cow was.
A 4oz cup of the Oikos had only 90 cal and was fat free. It had 11 grams of sugar, 10 grams/20% of protein and no high fructose corn syrup.

The one bad thing about greek yogurt is that it is more expensive that the reg. yogurt. I am guessing because it is made from more natural ingredients, which are a bit more expensive. But, I think it is worth paying a bit more for better and more tastier food.

If you haven't discovered greek yogurt yet, I highly suggest you try it. It comes in different flavors, and there are many different brands also, not just the 2 I mentioned. You can buy them almost everywhere: your local grocery store, Whole Foods, Central Market, Wal-Mart, etc. Or you can click on the websites above and find locations specific to your area.

If you try it and it's your first time, let me know what you think. If you've been eating it for a while let me know what other brands and flavors you like.

First night at home

2010-04-25T01:54:00.000-05:00

Tonight is my first night at home after my surgery, and it is not going well. I can't get comfortable, I've been throwing up, and I can't go to sleep. But, I haven't slept much these past few nights, and I'm exhausted. My mom is sick, with allergy stuff, but tit is really messing with her. I need her help to get in and out of bed, but I know she doesn't feel well.
Please pray that I can go to sleep and sleep more than 30 min. at a time. Continue to pray for pain control and discomfort.

I'm home after surgery

2010-04-25T01:49:00.000-05:00

I came home from the hospital this morning. The Dr. came to see me and I was up and walking around. My complications from yesterday are better, but we will be keeping a close watch on my blood pressure today. I am on very high restrictions for the next 6 weeks (no lifting my hands above my head, no pulling on things, no lifting, no bending, no twisting, etc). I will go next week and have the stimulator turned on.

I am in pain, but not alot, I'm more discorforted than anything else.

The hospital was the BEST. It was small, only 23 beds, and there were only 5 patients. Talk about alot of one to one contact with the nurses. The service was the best, the food was great (no everyone gets the same thing, they gave everyone a menu and we could pick and choose from it). They put flowers on all the food trays, all patients got water mugs to go home with. They had a fish/turtle pond running under the building, but one could also walk outside and sit on a bench and look. I totally recommend this hospital. The surgical nurses were great, and everyone was so friendly!!!

Thanks for the prayers, and I will keep you updated over the next few days and weeks. To all those who want to visit, I'm not up for visitors today, but maybe later in the week.

Surgery Date and Time

2010-04-20T15:32:00.002-05:00

I will have surgery to insert a permanent Spinal Cord Stimulator in my back, and the battery pack in my hip,

THIS Thursday, April 22nd. My surgery time 3pm, the surgery will take between 1-2 hrs and I will be staying overnight.

I went and had my pre-op this morning, and I am satisfied with the nurses and we have set up a plan for my treatment and meds.

Please pray that all goes well, and thay my recovery will go OK.

Pray that I won't be in alot of post-surgery pain, and that I will be able to control the pain.

Emily

Pray for Chrissie

2010-04-20T03:41:00.000-05:00

This little girl had open heart surgery today, which went very wrong. She died on the table and was dead for 20 min. before the Dr.'s were able to bring her back. As of tonight, she is alive, but only by the Grace of God.
Click on her tag for a link to her page and more background info and more ways to pray.

Time & Surgery

2010-04-13T23:16:00.000-05:00

I know I am slacking on updates, but I have words rolling around in my head, and will spend tomorrow writing them on here.
I am thinking about alot of things, but the biggest is my upcoming surgery next Thursday, 22nd.
When I scheduled it 2 weeks ago, it seemed like it would take forever to get here, and here it is.
I still don't have a time for my surgery yet, but I'm calling the hospital tomorrow for a time and to see if I need to come in a do a pre-op.
I'm nervous and excited at the same time. Having this surgery means that I will finally be able to get my life back. My life that I had before I got sick, and had chronic pain.

I'll write more about surgery, life, and other things tomorrow, when my mind is clearer.

Surgery Date

2010-03-30T14:06:00.002-05:00

My appt. with the neurosurgeon went great!! He was really nice, answered all of my questions, and really understood where I am coming from.

I will be having surgery on April 22nd..

The surgery will take about 2 hrs and I will be kept overnight. The recovery time is about 2 weeks.

After my recovery period, I will start weaning off the heavy duty pain meds, but I will not be off them 100%. If I can get off my patches and lower on the pills, I will be okay with that. I will be able to feel things in my abdomen, but will no longer have the chronic pain.

The only odd thing is that my battery pack (which will be inserted under the right hip) is non-rechargable, which means that every 3 years or so I will have to have surgery to change out the battery.

I'm so excited and so ready to have this done. As my mother told the Dr., the last 2 years have been HELL for me, but after this surgery I will be able to get some of my life back and start living again, instead of existing.

Thank you so much for praying for me,

Big Prayer Request/Update

2010-03-30T11:19:00.000-05:00

Today is my appt. with the neurosurgeon. I'm a bit anxious, but on the other hand I need to have this surgery ASAP. I have alot of questions to ask, so I hope to have alot more info than I do now.

In other news, my eating issues are getting worse and worse. My esophagus is starting to not work again, and botox would usually and has been injected in the past, but it no longer works for me. Until we can figure out what to do it's back to babyfood and soft foods. Once I have a surgery date, I will be scheduling to have some tests done at Scott & White in Temple. I have to be sedated for the test and S&W in Round Rock doesn't do the test.

Worse is that my reflux has also started again, but this time I have been aspirating into my lungs, which caused my pneoumnia last week.

I honestly don't know how much more stuff I can take, but I'm hanging on. I'm finally seeing a light at the end of the tunnel pain wise, but digestive wise, no light yet.

______________________________________________________________________

I know I haven't sent any updates in a while, but I have been hanging in there. I'm still in constant pain 24/7, and I am still having alot of problems eating. I no longer have my feeding tube. It became infected and was surgically removed in January.

Within the past month several things have been happening.

First off, my eating issues have gotten worse. My esophagus is starting to not work again, and the normal medicine that they would give me, no longer works for me. My stomach is starting to slow down again, and I am not digesting food like I should be. I will be having some tests done soon, and depending on the results I could be starting some new meds or having surgery.

Secondly, my asthma problems have come back after being gone for about 2 years. I have been having asthma attacks and I'm getting over pneoumnia and pleursly.

Third, I had a trial period in mid Feb. for a Spinal Cord Stimulator. For a week I had 2 wires inserted into my back that sent electrical impulses to my brain to override the pain signals. The Dr.s & I were hoping for it to be atleast 50% successful and it turned out to be 90% successful.

TODAY, Tuesday, I have a appt. with a local neurosurgeon to meet with him and schedule having the SCS permantently implanted. I am hoping and praying that I can have surgery scheduled within a week, but I know that he is scheduling patients 3-4 weeks out. I need to have this surgery ASAP. I am maxed out on my pain meds, and I'm still in pain. But, once I have the surgery I will be able to get off all my pain meds, something that hasn't happened in 2 years.

Please be in prayer for my appt. Please pray that I will be able to have this surgery within a week.

I will update when I know something.

Emily

Prayer Requests

2010-03-27T17:24:00.000-05:00

Please be in prayer for the following families:

Family of Eva Markvoort - Eva passed away this morning from cystic fibrosis. She has been in the hospital for a long while, and she knew that she was dying. The past few weeks she had been getting progressively worse. This morning she earned her wings and is no longer suffering.

Family of Jedidah Harper - Jedidah is a fun loving 3 year old boy who was very suddenly diagnoised with a very rare and aggressive form of cancer called Rhabdomyosarcoma.
He had surgery yesterday morning to remove the tumor, take some bone marrow biopsy, and put in a permanent port-a-cath in his chest (a perm. IV line).
Please pray that he will respond to treatment and that he will understand what is going on.

Update

2010-03-27T17:10:00.000-05:00

I don't have much to say.
I am going next week to meet with a neurosurgeon and schedule surgery for my spinal cord stimulation permanent implant. He is scheduling surgeries 3-4 weeks out, but since my pain has been so out of control these past few weeks, I'm hoping I can schedule my surgery 1-2 weeks out. I've heard that the surgery itself is very long and the recovery period is very painful. They will have to open my back and thread the leads into my spinal cord, and then open my hip area up and put the battery box/transmitter in as well.
I'll know more when I meet with the Dr. next week.

Bad Day

2010-03-18T12:19:00.000-05:00

Today, I was suppose to be traveling with my family to Dallas for my cousin's wedding tomorrow. But, after having several bad days in a row and not being able to handle my pain, I decided not to go. It wouldn't be any fun for me or for others around me.
I had 5 good days in a row, and felt better than I have in a long time, but I think I over did it, and every since Tuesday I have been in much worse pain and can't seem to get it under control.

I made an appt. with the neurosurgeon for the end of this month, so I can schedule to have the spinal cord stimulator permantly put in. I'm lookng to see that happen sometime in April.

I have so much more to say, but can't get my thoughts straight.

Thanks for the continued prayers!!

Surgery #2... spinal cord surgery

2010-03-02T00:15:00.000-06:00

I had my spinal cord surgery this past Wednesday and everything went well.

This is going to be the biggest surgery that I have had in the past 10 years. This will be the make it or break it surgery with my pain control. If it works, meaning I am atleast 50% pain free than it will be considered a success. And the Dr. and I will discuss having this surgery done permantly.

The easiest way I can explain this surgery is that the Dr is going to insert 2-6 tiny leads into my spinal cord, and those leads will act like nerves sending pulses to my brain. So, instead of my brain recieving signals that I am in pain it will recieve tingling signals, and I should feel none to very little pain. If my pain starts getting worse, I will have a remote with me at all times that I can use to turn up or down the tingling viberations. If, in the week that this trial runs, I can get up and move around and have a life with little pain, or pain that can be contolled by the leads than we have success!!

This is the one surgery that I have been very cautious about since I found out I was a canidate. It's a very rare surgery, and is only done when pain patients are out of options, which I am. It's a very delicate surgery, the leads are no thicker than a pencil lead. I'm very hopeful that it will work, but I will not be upset if it doesn't work.

Round One of Surgery completed

2010-02-20T21:48:00.000-06:00

My surgery yesterday went well. Even thought I had prepared for the colonoscopy, the Dr. was unable to complete it.

Even thought I had not eaten in 2 days, there was still food in my stomach, confirming that my stomach doesn't work properly.
The best news though is that the Dr. WAS able to find my tube and get it out.
It had pushed itself into a ball and was infected, but it is out!!
Thank you for praying!

Meanwhile, I am very nervous about my back surgery this Wednesday. Please be in prayer that it will work. This is my last chance to get off the pain meds, that I've been on for 2 years.

Surgery Round 1

2010-02-16T18:04:00.000-06:00

This week has been the week where all the pieces have fallen into place.

Tomorrow afternoon I am having a colonscopy,endoscopy, and enteroscopy (like the endo, but the scope is much longer). I have to be at the hospital, and my surgery starts at 1:30. The Dr. is doing this to see what is going on inside me, and to hopefully find and retrieve my feeding tube.

I am currently drinking my colonscopy prep drink and I'm having alot of problems keeping the drink down. Please pray that I will be able to keep it down and the Dr. will be able to find the tube.

Secondly, next Wed. the 24th, I will be having my back surgery to hopefully stop my hurting. I will know more about the surgery this week, as I go in for my pre-op.

Please keep me in your prayers as these 2 surgeries come up.
Thanks

Merry Christmas

2009-12-22T22:49:00.000-06:00

I know that I haven't written in a while, and for good reaso, to be shared later.
But for this week I want to say Merry Christmas to all my readers!

MERRY CHRISTMAS

May you and your family have a very blessed Christmas day, and while you are opening presents and spending time with your family, please remember the true reason we celebrate: to remember the birth of our King, born in a lowly stable, but became our saving grace by dying on the cross and saving us from our sins.

ER trip Round 2

2009-11-30T18:24:00.000-06:00

Yesterday, Sunday, I spent about 5 hrs in the ER. I have been in much more increased pain, especially when eating and trying to do tube feeds. Since I went to the ER at 4am, there wasn't a wait and I got into a room almost immediatly. I was also at this same ER 10 days ago, for what I thought was a different problem, but by the time I was released I realized both trips were for the same issue.
The Dr. did a radiograph, which means I had some really thick dye inserted into my tube to see if maybe I had a leak in my tube. Good news is no leak. Bad news is that my bowels are about 9-10 ft backed up. I didn't think that was the problem since I have been on extra fiber and pills to help regulate my bowels (and I thought they were working) since my 1st visit 10 days ago, but I was so wrong. The extra pain that I am having is because anytime I eat anything there is nowhere for the food to go since I am so backed up. So, tomorrow I will be starting a drink that is normaly given to patients who are about to have a colonoscopy. Luckily, I will not have to actually drink it, but I can put it through my tube. I have to have atleast 3 liters (think of the 3 liter bottles of coke) to have any chance to completly empty my bowels. But, because of my ongoing gastro issues, there is a higher chance that I will have more side effects from drinking/ pushing this stuff.
Please pray that this stuff will work, and I won't have any or many side effects from it.
Also, while I was in the ER, I asked for some extra pain meds, and they gave me a lollipop version on the pain med I am currently on. They called it "pain med on a stick". It was a much higher version than what I am currently on, but after eating/licking it, I was totally pain free for 24 hrs. It also completly knocked me out and I slept for almost 16 hrs. I am glad they gave it to me, because after having both nerve blocks and nerve ablaton fail, I didn't know that my current pain med came in a different form or a higher dose.
I am going to see my pain Dr. next week to ask him where I go from here. With the failed injections and the pain getting worse, (not from this issue) I want to discuss my options about my pain care, and after having that extra pain pop I know that there are additional meds that I can try.
Please also be in prayer that I can remain healthy. I have been feeling more sick recently, and I feel that I am coming down with an upper respiratory infection or pneoumnia. I have the all the symptoms of both, but there is nothing I can take until I become sicker or start running a fever.

Not meant to be

2009-11-23T21:30:00.001-06:00

Thanksgiving lunch with my family on Saturday, was not meant to be for me. After debating back and forth in my head and with me mom and finally deciding to attend, I got sick at the last moment and spent Saturday sleeping in bed. When I tried to eat left overs that were brought to me, the only thing that would go down were the sweet potato's.
A trip to the beach this week to celebrate family with my family, was not meant to be for me. I am running a fever, and have been for almost 2 weeks, and I don't want to expose my family, one person who is pregnant and has a small child, to anything that I maybe infected with and get them sick as well.

Thanksgiving last year, I don't even remember. Thanksgiving the year before, I had the stomach flu and was in the hospital.

Maybe next year will hold a normal Thanksgiving and a year of things to be thankful for.
But, after watching a back episode of Bones today, a certain line stuck out at me: "what do I have to be thankful for?, I am alive and breathing"

Yes, I am thankful for being alive and breathing, especially after everything that has happened this year. But, after thinking for a while I have other things to be thankful for:

A mother that loves me dearly
A family that loves and cares for me, even if they don't know how to show it
A saviour that died for me and my sins... and yours too
To live in a free country
To have a house over my head and food to eat and clothes in my closet, because some even in the US don't have that

What are YOU thankful this week? Even if you are in a place where you can't see the light at the end of the tunnel and you don't think you can keep going, remember that there is ALWAYS something to be thankful for.

Thanksgiving?

2009-11-20T22:39:00.006-06:00

Tomorrow is my family's Thanksgiving Dinner, since most of us will be at the beach next week.
Thanksgiving doesn't mean much to me this year. I've always been big into Thanksgiving and at family dinner going around the room and saying what we are thankful for, but this year, not so much. Since I've been so sick this year, had 3 pain blocking procedures and they all failed, lost my grandfather, and pretty much lived a non existent life, what do I have to be thankful of?
I'm still alive, but I am no closer to being off the pain meds than I was last year, the Dr's have given up on finding what is wrong with me, I have no friends, no contact with the outside world, except through the internet.
With my stomach problems, don't know what I will be able to eat tomorrow, plus I am having additional digestive issues that required a 5 hr ER visit yesterday.
I seriously don't feel thankful for anything except for the fact that I am still alive.

On the other hand, I have found another person that has the same syndrome that I do. She is a 3 yr old little girl and she is the first person, other than me that I have heard of that has my syndrome. She could use some prayers as she has been really sick and in the hospital for the past few weeks. Her name is Eithene and you can find out more about her here: http://www.fromthebanksofjordan.blogspot.com/ .

Also, if any of my readers are artistic in blog creation, I could really use some help with a blog redo. I try to add templates, but my words either get cut off or it looks strange. I don't want to go all out, but just something cheap and cute would help.

Busy Weekend

2009-11-09T20:59:00.002-06:00

I had a busy weekend, which included a trip to Albany, Tx (a 5 hr drive) to bury my grandfather's ashes, 11 months to the day when he passed away. It was very hard for me, and very emotional for my family. I am glad that it is over.
I got sick on the car ride up there and started throwing up, so my mom had to pull over and I had to take extra meds. Luckily, I brought all my meds with me.

After being in extreme pain after my nerve burning last week, I got a last min. appt. with the Dr. and she said that my extra pain was due to the fact that my "little" nerves are inflamed & not used to the main nerve being gone. She increased my meds, and told me that after my 2nd nerve burning next week the same thing will happen- I will get worse before I get better.

After picking my dog up from the kennel Sunday night, I realized that she had a small wound on the side of her head that had dried blood scabed over. This morning when we got up my dog's face was VERY swollen. After a trip to the ER vet the wound had becomed abcessed and she had to have emergency surgery to have it drained. She cuurently has a small open hole on the side of her face with stuff draining out of it, that I get to clean often for the next week or so. She is on anti-biotics and pain meds for the next week.

I have a kinda busy week. I am still in alot of pain and very nauseous, but there is stuff that has to be done.

Nerve Burning

2009-10-30T10:58:00.000-05:00

Well, after what I thought would be a rountine pain Dr. check-up turned into scheduling for a nerve burning procedure.
Both of my nerve blocks didn't work. I got 1-2 days pain free, and was suppose to get 3-4 months pain free.
The first nerve burning procedure will be this coming Monday morning at 9:15am. I will be sedated again, and the procedure will take about a hour.
The objective is to burn the nerve(s) so that the nerve will no longer send signals to my brain saying that I am in pain. I will have 2 of these procedures done, but then end result is that I am suppose to have a longer time without pain.
My second procedure will be Monday the 16th.
The Dr. also said that it is normal for the nerve blocks not to work on a patient that has been in as much pain as I have and for as long as I have.
The Dr. also increased another one of my pain meds, so I will be taking it more often throughout the day.
Hopefully the nerve burning will work and I can get some pain relief.
Please be praying that the burns will help.

Struggles

2009-10-23T00:02:00.004-05:00

While I don't want to go into details, I am here to admit that I am really struggling. Physically, emotionally, mentally, and spirtually. Having a chronic medical condition is HARD. Being in constant pain is HARD. Not having a church family, for the 1st time ever, is HARD. Not having the support system that I once had is HARD.
Please keep me in your prayers as I continue to go through life. At this moment, I see no light at the end of the tunnel. October has been hell month for me, with 2 surgeries and 2 nerve blocks, and 3 trips to the ER. Novemeber doesn't look much better, with spending ALOT of time with the family, traveling all across Texas, finally burying my grandfather; I see a very tiring month ahead and don't know if I have the stamina or strength to keep up.
I have been traveling on this "new" road for 18 months now, and while I didn't think I'd be on this road for this long, I don't know how much further I can go.

Please pray for strength, for change, for me not to lose hope.

Unexpected Surgery Round 2

2009-10-19T20:39:00.001-05:00

I had a very unexpected surgery this morning. My new tube broke/came out yesterday (yes, the same one I had put in 2 weeks ago) and I spent most of the Sunday afternoon in the ER waiting for a surgery that never happened for 2 reasons 1) no one read my chart to see that I have to be sedated for this surgery ( it was going to be done w/o sedating me) 2) they didn't/couldn't find the correct tube. So, surgery took place about 10am. I brought the correct tube, so they knew what to use. I have made up my mind that if this tube falls out again, I will NOT have another surgery to have a new one put in. This is my 6th surgery for a new tube in 5 months. After today, I won't do it again. I don't know what time I will be home, but probably mid-late afternoon.

Will this ever end?

2009-10-11T02:06:00.005-05:00

This weekend, especially Friday, I feel I have taken a turn for the worse. I am having to rely on my pain & anti-anxiety meds much more know, as the pain has greatly increased. I tried to take a feeding, on the lowest rate possible and I had to stop after the first 50ml, only 1 hr. in because the pain was too great. I tried to continue later in the day, but to no avail. Plus, my new feeding tube is not going to make it. When the stitches come out, there will be nothing to hold the tube in place and it is leaking. I want my old tube back, because I know that it works. Actually, I don't want any feeding tube at all, but that's is not a possiblility. It is getting increasingly painful to eat again, so I have started my baby food, no texture diet again. That includes: baby food, popcicles, soup, pot pies. Not much, I know, but any time food hits my stomach I am in great pain.
I have already lost 10lbs in about a week, and feel that the number will increase the worst I get. I can't do anything because I feel so bad and I'm in so much pain. I have no energy because I'm not eating much. So, my bed has become my new hangout place. Thankfully I have Netflix, so I get new movies every few days.

I guess getting this nerve block on Monday is happening at a great time. I pray that it works and that I will be able to take more tube feeds without pain.

I can't go to the hospital because there is a note in my chart to not give me any more pain meds. But, considering I am already on very powerful pain meds, there should be no reason why I should be in pain. I can't go to my GI doc because he doesn't know what more there is to do. I feel pushed up against a brick wall.

Friday morning

2009-10-09T01:26:00.004-05:00

Nothing big going on here. It was HOT today, but suppose to rain all day tomorrow.
I did end up having a very unexpected emergency surgery Monday afternoon, but I am already recovered from it and now I'm looking forward to my nerve block this coming Monday morning.
Actually, I am a little scared and nervous of the procedure, as I have never had one before and I'm scared of what could happen and what could go wrong. Hopefully, it will work and I will be able to go off the fentanyl for a while.

I have a prayer need for a family I have mentioned before. The family in Houston that has sextuplets. Three of them died shortly after birth, and 3 girls are still alive. The girls are now 2 mths. Ashlyn, the smallest weighing in at 13oz, is not doing well. Some of her systems are shutting down, and even though she is still on a vent, she is fighting for oxygen and not breathing well. She has been fighting for a while now, but now it seems that she may be loosing this fight.
Please pray for the baby. Pray for the parents. Pray that the Dr. & nurses will be able keep this little girl alive.

Nerve Blocks

2009-09-27T22:48:00.002-05:00

The following an email that I send out yesterday about my upcoming Nerve Blocks. You can click here for a link that tells more about what happens during a nerve block and how it is done.

I know that I haven't been sending many updates, but I have been doing ok. Nothing major happening with my health, but I am in constant severe pain 100% of the time and because of that I am on extremely strong pain meds.

However, the pain meds seem to not be doing the trick any more. I saw a new Dr. a few weeks ago at my pain clinic and he suggested doing a nerve block. Having a nerve block done means that, if it works, I could be pain free for 3-4 months at a time, and during that time I wouldn't have to rely on my other pain meds as much.

I am asking for prayers specificly for these upcoming procedures ( I have to have 2 for the block to work). Doing a nerve block is very risky and a last effort preocedure. The doc. will be inserting a needle filled with an anthestic into the correct nerve group in my spinal cord. I will be sedated and a x-ray or CT will help show the Dr. the correct bundle of nerves to inject the meds in. Normally, the doc. would inject several different meds, but I am allergic to some of the different ones that he would use. Because of that, the doc. doesn't know how well the block will take, but anything is better then where I am at today.

My biggest fears is that 1) the nurses will be unable to start an iv on me. The last time I needed an iv started in took 5 hrs to find a vein that would not blow. They ended up using a vein in my foot. 2) the procedures will not work. Considering I have had 2 huge botox injections in the past year and neither of them took, I am very afraid that the nerve blocks will not take either. 3) any time a Dr. starts messing with a spinal cord there is fear that something will go wrong.

The "good" news is that my doc. own a surgery center that is right across from the main office. The office and surgery center are less than 5 min. from my house. So, I won't have to go to a "real" hospital and if all goes as planned I should be in and out within 5-6 hrs. If something happens, it could be an all-day affair. My first procedure is October 12th and my 2nd is Oct. 26th.

I will update if something changes and I will update after my procedures. Thank you for your continued prayers.

Early Sat. morning

2009-09-26T04:50:00.002-05:00

Yesterday, Friday, I woke up for the first time in 18 months WITHOUT being in any pain. I thought it was a fluke and this morning I was right. But, even though I spent much of the day yesterday in no pain, I did end the night by taking pain pills because the pain came back.
I woke up at 4am this morning in ALOT of pain, so that is why I think yesterday was a fluke.

After seeing my new pain Doc. a wekk and half ago, he took me off the pain med that I had been on for 6 months and put me on something different that never worked, even after doubling the dose. Finally, after a week in extreme pain, he put me back on the main pain med., but there are several things that must be done before I take it, so I haven't had it yet, but will take my first dose this afternoon. I am hoping that it will kick in quickly.

I am going back to bed soon and will hope to sleep most of the morning.
I have more to update, later.

Urgent Prayers Needed

2009-09-22T23:02:00.002-05:00

I read about this family on a friend's facebook page.
It is about a family in Houston. The mom had a baby last Tues. 9-15 and this Tues. 9-22 the mom was declared brain dead and was taken off life support. The Docs don't know what went wrong other than the blood got cut off from her brain, causing brain damage.
Please keep this family in your prayers as they welcome their new baby, and mourn the death of the mom.
The Sullivan Family

prayers needed... for me

2009-09-20T22:35:00.003-05:00

I know that I am getting really bad at updating, but I haven't felt like writing.

I can say that I am in a really bad place right now. Physically, Emotionally, Mentally, etc. and I could use some major prayers.
I'll update more when I can, just know that I am still, after 17 months of being sick, having a very hard time dealing with everything. My life has been turned upside down and it will never be what it used to be and I HATE that.
I am going through a rough patch in life, going through it for the past 5-6 months, and just when I start feeling better something happens to push me to the bottom again, and I have to climb out all over.

Does anyone else feel like this? Even if you aren't sick, do you ever feel like you're trying to climb out of a hole and right when you get to the top, you loose your hold and fall back to the bottom again?

Quick Update

2009-09-15T21:24:00.003-05:00

Here is a quick update, since I am not feeling well and want to back back to bed.
I am still having alot of problems with my pain and I'm starting to have problems with the medication. Thankfully, I am seeing a new pain Doc on Thurs. (my previous one quit the practice).
Secondly, I am having 2 other scary medical problems, both will require me to see a specialist. The first is that I am loosing feeling in my fingers. This started about a month ago and has just been getting worse. I can be doing any number of everyday things and all of sudden I will realize that I can no longer feel my fingers. Sometimes it lasts for 10-20 min. , sometimes up to a hour. The second is that I am having problems with my feet swelling. I've had this problem off and on all year, but after not having the problem for 4 months when it did occur again, it took me by surprise. I don't know what causes it, but the #1 concern is that something is wrong with my heart. And since I have a history of heart problems, it is something I need to get checked out. Because of the swelling I can only wear flip-flops, as my feet are too swollen to fit into tennis shoes.

But, I do have some good news. My depression is getting better. I no longer have insoumnia, and I am able to go to sleep on my own, and without the help of a sleep aid. I am sleeping soundly at night and don't wake up in the middle of life like I used to.

Please continue to keep me in your prayers, and I will update better when I can.

So Many Things

2009-09-05T02:55:00.004-05:00

Sorry for the lack of posts, I haven't felt like writing much.

I have an update on my health/care.
A few weeks ago my pain meds were increased & added on to. My main pain med had the dosage increased to 75mcg (micrograms per hr) and I had a secondary pain med added because my pain has gotten worse.
I am thinking that increasing that pain med has caused my sleep to be way off. I am not going to sleep well, sleeping all day/afternoon and up most of the night. My Dr. that I have beening at the pain med. clinic quit, so when I call the office on Tuesday I will have a new Dr., but don't know who yet. My sleep issues are becoming too irregular to go on much longer, so I will be calling the Dr. on Tuesday.
My mom has ordered some more feeding bags, so I will start taking tube feeds again. That will help, because I don't eat much anymore, atleast not enought to sustain me and give me the nutrients I need.
I started on a new, but been on before, anti-depressant and I seem to be doing better in that aspect.
I still haven't needed to go to the ER, but I have come close these past few weeks. I am very proud of myself for not going and for sticking it out at home.
I know that I am doing alot better health wise, except for my sleeping. Once that gets back on track I will feel good.
I am wanting to start volunteering at a local school, but can't do that with my sleep the way it is.

Now, I have some prayer requests:
1. My uncle was in a very bad motorcycle crash last week, and because of that he is having his foot reconstructed. Luckily he had his helmet on, because without it he wouldn't have made it. Please keep him in your prayers, as he has several more surgeries to go and is recovering from other wounds.
2. I little girl, named Brianna, passed away yesterday from T-18. I have talked alot about T-8 in the past and how most babies born with it, don't live past their 1st year, because T-18 is not compatiable with life. Brianna was 2 yrs old. Just making it past a year is a miracle. Please keep her family in your prayers as they deal with her loss, but they were prepared for this as she had been going down hill for several weeks.
3. Sara Rose is a 3 month old preemie, who was born at 27 weeks. She has been at home and thriving, but this past week she was diagonised with bacterial meningitis, a very fatal infection. Please pray that she will make it through this, and for strength for her family.
4. I have added a new prayer button for a little baby named Ryan. He had surgery this week, and is recovering well. Please check out his blog for more info.
5. Gavin, and his family are going through a really hard time right now. Please check out his blog for more info and ways you can be praying. You can get to his blog by clicking on his prayer button to the left.

Still Here

2009-08-23T15:01:00.002-05:00

Just wanted to write and say that I am still here. I've been having good and bad days and don't have much to write about.

New Family Member & Prayer Requests

2009-08-09T04:04:00.005-05:00

First off, a new family member was added to my household on Wednesday.

Meet Cleo:

Cleo is my new 8 - 10 week old kitten. She was found abandoned by some friends of my cousin on Tuesday and I went to pick her up on Wednesday night and she has been a ball of energy ever since. My mom thought that getting a new kitten would give me something to do during the day and keep me out of bed and my mind on other things. She is used to being around other animals, but my dog & cat are not used to being around other animals. But, Cleo has stormed her way into the house is is slowly making friends with Missy (my 13 yr old cat) and Zena ( my 4 yr old dog). Zena is doing better today with her. Cleo likes to go into my room and get onto my bed and sleep on me, and as long as Cleo is still Zena will tolerate her, but the moment Cleo moves around Zena gets into her stance and watches everything and every movement Cleo does. Zena is a border collie who likes to stare at and try to "eat" anything that is smaller than her and moves. Getting a new pet was not a planned thing, but it happened.
Anyone have any ideas on how to get Zena and Cleo to get along better?
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Now on to some prayer requests:
1. A family that lives in Houston gave birth to sextuplets (6 babies) on Tuesday, 17 weeks early. So, they were born at about 23 weeks, which for that many multiples is VERY early. 4 girls and 2 boys. One of the boys died Thursday night and one of the girls died early Saturday morning. Please pray for the Stansel Family and the 4 remaining babies : Rachel, Haley, Ashlyn, and Braden. They have all already had heart surgery to close a hole in their hearts, known as a PDA.
2. A friend of mine is having some personal issues. Her son, Gavin, has a very rare medical condition and summer is the worst time of year for him and his medical issues. She is also having some medical problems, along with financial troubles that stem from her son's health problems and frequent hospitalizations and ER trips. I know from experience what she and her family are going through. Please keep her in your prayers as she goes through this difficult time.

How I Feel

2009-07-30T22:23:00.005-05:00

First off, Stellan is still in the PICU and still in his hometown. It seems that God is once again working a miracle through his life. To find out more, click his prayer button to the right.
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On to how I feel.

I have been recently diagonised with post traumatic stress disorder or PTSD.
People that usually have PTSD are military men & women who have fought in war(s), first responders (police, firefighters, EMS, etc), people who have witnessed first hand some kind of horrible bad thing (a murder, a rape victim, bombing victims, car accident victims, etc).
Other people that might have it are people like me. People who have spent countless months or years in and/or out of the hospital, who have been very close to death, who have been told there is nothing more medically that can be done, etc.

These past 8 weeks have been the longest ever. It's also been the longest time in the past 16 months that I've been out of the hospital/ER.
But, it's also been the longest time that I've been away from God. And the reprucussions from that are just hitting me. No church, no prayer, no Bible reading, nothing. Slowly, I am starting to see that abandoning God was probably not the smartest idea. But, I am having great questions of how a God so loving and kind and who doesn't want to see His children hurting, can let a child of His hurt for so long.
In 15 months I have gone from a healthy, life loving, love to work, always in Church on Sunday person to a weak, sick, can barely get out of bed much less the house, haven't been to church in 6 weeks person.
And all for what? At first I thought, and I still do think , it was because God wanted to use me to show people that even though I was sick and fighting for my life, I was still living for Him and I was more than willing to let God work through me. But now, I'm not so sure.

But, the one thing that I am sure of is this: no matter how far I go down the road without God, He is ALWAYS there, waiting with open arms for His children to return.
The following song is how I feel now.
It is by Natalie Grant, and the title is "I Will Not Be Moved".

I have been a wayward child, I have acted out.
I have questioned sovereignty, and had my share of doubts.
And though sometimes, my prayers feel like there bouncing off the sky,
the hand that holds won't let me go, and is the reason why.
I will stumble, I will fall down
But I will not be moved
I will make mistakes, I will face heartache,
But I will not be moved
On Christ the solid rock I stand,
All other ground is sinking sand, I will not be moved.
Bitterness has plagued my heart, many times before,
My life has been a broken glass,
and I have kept the score, of all my shattered dreams,
and though it seemed, that I was far too gone,
my brokenness helped me to see, it's grace I'm standing on.
I will stumble, I will fall down
But I will not be moved
I will make mistakes, I will face heartache,
But I will not be moved
On Christ the solid rock I stand,
All other ground is sinking sand,
I will not be moved
And chaos in my life, has been a badge I've worn, and though I have been torn,
I will not be moved
I will make mistakes, I will face heartache,
But I will not be moved
On Christ the solid rock I stand, all other ground is sinking sand,

I will not be moved

Long Summer Days & Stellan

2009-07-28T14:16:00.006-05:00

Is it just me or is July the month that may never end? This month has seemed to drag on forever. Maybe because this July will go down as the hottest EVER for Austin. Maybe because we are in the middle of the worst drought this part of Texas has seen since the 1950's. Maybe because I have been in my house for weeks, too out of it to go anywhere. Who knows, but I'd give anything to go to a place where it is less than 70 degrees and it rains. To say that I can't wait till winter is the understatement of the year. But, last night on the news it was said that August is always hotter than July.

I've been doing ok. Yesterday I was in bed all day due to severe pain, but today I got up early and I've been running errands all day.
I haven't had health insurance for about 3-4 years, but as of Aug. 1st, I will have Medicare. I'm excited about that. It will be such a relief not to have to pay out-of-pocket for all Dr.'s visits and for medications.
There is a new pharmacy near my house, and one of their services is free delivery. I haven't used that yet, but I am trying to get all my prescriptions moved to that one place, instead of have scripts at 4-5 different places. I am also finding that they have better prices than some of the well known big box pharmacies, since I have been doing cost comparisions on all my meds.

My eating is still not that great, but when I went to the grocery store this morning I got some healthy food and some peaches and carrots. This store also has a section called "Cafe on the Run" , so you can get pre-made food, they pack it for you, and you take it home and cook it. They happen to have the best Mac & Cheese I've ever had, so I bought some of it too.

In other news.
Stellan is back in the hospital and is waiting to be airlifted to Children's Hospital in Boston. It's where he went to in April. He will have to have another heart surgery, and there is a good chance that he will come out of surgery with a pacemaker. He is not doing well, but is better than he was just 24 hrs ago. This trip to Boston both his parents are going on, as the trip in April only his mother went. His family came together yesterday afternoon for a prayer vigil. During the past 72 hours (3 days) he has only been OUT of SVT 1 1/2 hr. His SVT has been at a constant rate in the mid 200's, so that's about 240 heartbeats a minute.
Please keep him and his family, and those that are and will be taking care of him in your prayers. For latest updates you can click on his name, which will take you to his mom's page, scroll down and find her twitter updates, which she has been updating regularly.

It's Back... need prayers

2009-07-22T13:42:00.004-05:00

I'm sorry for not updating more regularly. I just haven't been in the blogging mood, plus there is not much to write about.

First off I will say that I have been on the fentanyl pain patch for about 2 months. I have my good days and bad days. Some days I wake up pain free and some days I don't. I will say that since being on the patch my pain is about 95% gone. The other 5% is my breakthough pain, and that number is rising slowly.

One of the reasons my pain is returning is the my esophagus is starting to NOT work anymore... again. The past week, when I have tried to eat, my food gets caught/stuck in my esophagus it just sits, and waits for gravity to take control. The food that is stuck is VERY painful. It feels like my throat and esophagus is on fire.
This also means that baby food, applesauce, pudding, jello, and soup is back on the menu. And anything with texture or anything that clumps together when swallowed is off the menu.
There are several choices about how to proceed with this.
But, I come asking prayers again. Medically, there is nothing that can be done, because I do not respond to medical treatment for this condition.
This condition is VERY painful, I pray that the pain will be controlled. I pray that my digestive system doesn't stop working along with my esophagus. I pray that eating soft, non-textured foods will help.
If you could add me to your prayer list, I would greatly appreciate it.
I will update next week.

Still Here

2009-07-14T14:08:00.002-05:00

I'm still here, I just haven't been in a blogging mood lately, plus there isn't much going on.
I will say that It's been about 6 or 7 weeks since I have been OUT of the hospital with no return trips to the ER. I'm am happy that I have been at home and not in the hospital. I have found a great pain management Dr. and a great group of mental health Dr.s who are working with me and trying to get me feeling better that way too.
One of the meds they gave me makes me very sleepy and makes me sleep for along time. So, I've been sleeping alot lately, but I'm ok with that.
It has been so hot outside, into the mid 100's, usually 103-105, that I have tried to stay inside as much as I can, except for early mornings.

My mom and I have tickets to go see the latest Harry Potter movie tonight at midnight. I'm excited about the movie, I just wish I had finished the book before today, but I still remembers what happens. I haven't been to the theaters since the last HP movie came out, and that was 2 or so years ago.

I hope that summer is treating everyone well. And that it's not too hot where you live.

3 Weeks

2009-07-03T10:23:00.003-05:00

It has been right about 3 weeks since my last trip to the hospital, which for me is a BIG thing. But, on the flip side of that it's also been 3 weeks since I sleep more that I am awake (this being due to the pain med).
I have found a pain managment Dr. that I like and another Dr/pain practice that is going to help me on a mental level and help me to learn to treat my pain other than the pain patches.
I can finally say that I haven't been in dire pain in 3 weeks. The breakthrough pain that I am having is the kind that I can handle.
My eating has been very much decreased, but I am still here.
But, the best news of all is that I found a way to go swimming without getting chlorine in my tube and keeping my tube site clean and dry. I'm excited about this because I LOVE swimming, but haven't been able to go since I got the tube put in, but since the temps have been in the low 100's here being in any water is the perfect cool off.

I do have 2 side prayer requests: one for my dad and one for my godson who is 4 yrs old is is very sick in the Children's hospital. I will update more tonight when I am more awake.

Have a safe and happy 4th!!!!

New Changes & 28 years

2009-06-27T04:20:00.004-05:00

I am 4 hours into my 28th birthday. And let me just say that this past year was one that I never expected to happen. But, I fought through and am still in the process of fighting and winning my battles. My battles are not easy, for me or for anyone else who is going through a trying and hard learning experience.

And while I cannot drive anymore, the meds are making me into a person I'm not and I am still have some troubles, I am ALIVE, and I honestly didn't think that I would make it through this past year. God has been with me every sense of the way and HE has NEVER left my side.
This past year has tought me more about God, prayers, friendships, relationships, and so much more.
God has led me to a church where I feel accepted, even through my medical challenges. God has taught me that even though "church going Christians" are out there, there is a difference. A difference in saying "we care for you and are praying for you" and a difference in showing "we care for you and are praying for you." God has tought me to accept people for their differences and is teaching me to let people accept me for my differences.

Blogging through this past year has helped me so much this year. Blogging is my way of "escaping" and getting my feelings and emotions out. So, I say thanks to all those who read and sometimes comment on my blog.

Where do I see myself in a year? I have no idea. I want to go back to work, but as long as I am on pain pills and can't drive that is not an option. I have been thinking about going back to school, but my mind has to be alot more clearer than it is now. I want so many things right now, but I have to take life one day and step at a time.

Busy & Birthday Week

2009-06-22T20:52:00.002-05:00

This week is shaping up to be a VERY busy week. And this week is also my birthday week.
Today my mom and I went annd ran errands and went out to lunch together and went to IKEA!! I still cannot drive, so my mom is my taxi.
Tomorrow morning I have a VERY IMPORTANT Dr.'s appt. with a great pain management Dr. who uses more than meds to help a patient. His clinic uses bio-feedback theraphy, and acupuncture (thought I'm still not 100% for that). Thankfully he had a cancelation for tomorrow morning, other wise I'd have to wait till August.
Thursday morning I have an appt with MHMR to get me involved with their services they offer. Free or reduced Dr. visits for the low-income population (that's me). Getting involved with MHMR will help to get my depression and anxiety attacks under control.
Friday morning I have an appt. with MAP to get me involved with their services, also for low income patients. But, MAP allows its clients to make appts. with all different types of Dr.'s for free or reduced charges. Getting involved with MAP will help me to be able to see many types of Dr.'s and it will keep be OUT of the hospitals.

Oh, and Saturday is my 28th birthday. But, if all goes well this week, than everything that goes well will be my present to myself. We have been waiting months, if not years to get me into these programs, and it's only a total God thing that it's all happenening this week, my birthday week.

Please pray that all goes well this week, and I will update later in the week when I know more.

Stellan and update on my appt.

2009-06-18T23:58:00.003-05:00

My appt. with the new pain management Dr. went pretty poorly today. I was not happy when I left his office and I haven't stopped crying since.
Pretty much the following is going to happen... for now. I will stay on the pain patch. They are NOT cheap. For 5 patches it was $120, I don't know how much 10 patches will be. While I am on the patches I CANNOT drive, as if something were to happen (car accident) it would be discovered that I am wearing a pain patch and would be at fault for driving while under the influence of a controlled substance.
Driving is my one last normalacy in my life. I have a birthday next week, and I feel that instead of moving toward becoming a full adult, that I am having to rely on my mom more and more know and it is turnng me back into a child.
The new Dr. wants me to see a different pain Dr, who has a 2 month waiting list, who has different therapies and techaniquies that would help me better.
The new Dr. said (and very bluntly at that) that I would never get better with pain control. I will be in pain for the rest of my life, and other than making me comfortable, there is no cure.

I used my savings to go and see this new Dr. and that money was what I used to pay for other Dr. appts, to pay for my prescriptions, and to buy my groceries and pay my bills. Now that money is gone and I don't know what is going to happen.
I will be able to start using Medicare in Aug. of this year, but I still have to pay some out-of-pocket until then. And now to go and see an different Dr. will cost more money.

There are so many"ifs" right now, and I don't know what is going to happen. I have started having daily anxiety/panic attacks, and have run out of the meds to treat them.
I am so lost right now. I feel like I am doing this all on my own, and while my mom is trying to do her best, her mom is sick too, so my mom is having to choose between staying home and taking care of me or going and taking care of my grandmother.

I feel like I am walking down this road alone and that I don't have any support or true friends that I can turn to. I don't see that light at the end of the tunnel and don't see a way out.
I will say that there are several other factors that play into this as well, that I don't want to share, but need prayer for. But, I feel that no matter how many people pray, my life and the situations in it just keep getting worse.
I feel abandoned by my family and "so-called friends/acquaintances" and by God.
I don't know how else to ask for prayers, when I don't see them working.
==================================================================

On a different note. Stellan was taken back to the ER this afternoon and has been admitted to the PICU. His SVT is out of control and the meds are NOT working. His Dr. has been consulting with the Dr. in Boston, but a decision to be made is still up in the air. Please pray that his SVT will stop and he will not have to be in the hospital for long. You can read about this latest hospitalization and all updates on his mom's page.

Mid-Week Update

2009-06-17T21:44:00.004-05:00

I can't believe that it is already Wed. night, this week has flown by and I haven't done much of anything this week.
The new and most powerful pain med that I'm now on has some strange side effects, and because it varies from day to day, I am no longer comfortable driving. I feel ok if I'm driving in my neighborhood, but not anything outside of it. So, my mom has been taking me places this week.
Tomorrow is a big day, as I have an appt. with a new pain management Dr. , one I hope will help me and will understand my pain better than the last one did. Since I have been on this new med, my pain has gone from hurting 24/7 to barely hurting or not hurting at all. I am having some breakthough pain, but nothing compared to what it was.
Eating no longer hurts, but I still can't eat alot of stuff, due to stomach issues. My swallowing has gotten better, but I still don't want to push it.

My grandmother has been sick this week as well. She was taken to the hospital Saturday morning by EMS because she was so dizzy and nauseous she couldn't stand up. She was kept over night for observation, but all that was discovered was she is having some issues with her equalibrum and balance being off. The Dr. wants her to start physical theraphy and that should help her get better soon.

I would appreciate extra prayers for my appt. tomorrow. I don't know what my choices are reguarding my pain treatment. Prayers that the Dr. will be able to help and work with me and my body.
I will update tomorrow night about how the appt. went and the pain plan.

ROT RALLY

2009-06-12T16:32:00.004-05:00

So, this weekend is the ROT Rally (Republic of Texas), which is going to bring some 10,000 motorcycle riders into and around my hometown, Austin, Texas!!
Tonight, Robbie Knievel, son of the late Evel Knievel will be preforming a jump in front of the Texas State Captial.
There is going to be an 11 mile motorcycle parade snaking its way through downtown Austin, and in from the expo center (where the rally is actually at).

In the past few years I have gone out to the parade route and then walked up and down the miles of show-bikes, but I am older now, I don't want to be around 25,000 of my closest and not so closest friends, who will show up for the parade. People come from all over the country for this weekend, and it is one of the biggest $$$ weekends for my city.

Also this weekend, the UT baseball team is in Omaha ready to play for another National Championship in baseball. The last time the UT baseball team won a National Championship was in 2005. It's time for another one.

I forgot to mention that it's well above 90 degrees here and is inching above the 100 degrees mark. Anyone who is outside will bake in an instant.
With it only being the first few weeks of June, this summer will go down in the record books for getting hot earlier and staying hot later and for having more 100 degrees days. Oh, the joys of living in Texas!!

Have a great, but safe weekend, and watch for motorcycles.

Thursday night update

2009-06-11T22:45:00.002-05:00

It's late Thursday night. Thunderstorms have just finished rolling through my city. With the thunderstorms brought hail, high winds, lightening, thunder, and 2-3 tornadoes. In my part of town we only got rain, thunder, lightening, and high winds. We need every drop of rain we can get. We are in a stage 4 drought (the worst stage drought a place can have).

I got released from the hospital this afternoon. I went in Tuesday morning about 3am, and was not so easily admitted this time. I am off my pain pill, Dilalulid. But, I am on 100% my pain patch, Fentynal. Fentynal is the strongest pain med on the market. If that doesn't show how much pain I'm in, I don't know what will. I had an endoscopy done yesterday afternoon, and nothing was found to be wrong.
However, the Dr. did admit today that something could be there, but it is not showing up on any tests. He also admitted that my syndrome is so rare, that there is no book that says how things should be handled. Everything that could/can be done in the hospital is happening at home.

I am very out of it, and still don't feel 100% yet. However, life goes on. My family is coming over this Sunday afternoon for Sunday lunch. I or my mom or both of us is taking my dog to the vet on Monday for her yearly check-up.

_________________________________________________________________

I DO have a small update on Dakota. She is doing well. She is thriving. One of her nurses posted a private message saying that Dakota is talking, eating, and interacting well with the nurses. Now that her mom is not there, and my guessing is that she had developed a great fear of her mom and that fear had caused her to digress, she is acting how she used to act, before she was hospitalized 80+ days ago. Her mother is not allowed visits for 30-60 days, and even then the visits will be closly monitored by CPS. I don't know where her mom is, I just know she is not at home. I don't know if Dakota is still in the hospital or if she is at home with her father and older siblings.

Early week update

2009-06-09T00:09:00.002-05:00

The clock says 12:10am. I have been asleep for the past 4 hours, home from a 4 hour trip to the ER, where other than a few x-rays & an EKG was done, nothing else was done. No pain meds given, no meds to help my stomach, nothing. The Dr. was afraid that the Dr.s at the main hospital downtown are just making me worse my loading me up on pain meds and making me comfortable. And the past 3 times I've been at the main hospital, I've had the same 3 Dr.'s, so it's not like I'm seeing a new Dr. everytime I visit. These 3 Dr.'s know me, they know my history, they know my case.
I am afraid that today will bring another day of an ER visit. I have reached or am reaching the point of last resort. Eating is no longer enjoyable, but most painful from the first drop of food that enter my esophagus, until it leaves my body. Tube feeds are just about as painful as eating. The little amount of pain med that I have is not doing the work, I am in constant pain. The chest pain has started, and it's not my heart, which means that my esophagus is inflammed and shutting down again.
In writing this I am just at my breaking point, I have tears streaming down my face, knowing that I may have reached the point of last resort, is not fun or comforting.
So, what is the last resort?
Other than opening me up and having a look from that perspective? Knowing that I'm not strong enough to make it through surgery?
The last resort is to put in a permanent catheter/IV/PICC line, and hook me up to TPN feeds. All feeds will be given through the IV and it will give my COMPLETE digestive system a chance to shut down and heal it's self (or that's the idea).
But, with knowing that part of my disease causes vital organs & body systems to shut down/ stop working, maybe that is already happening and the TPN feeds will be a good thing.
My brain is going 100 different places all the time. Thinking that maybe if I stay at home, get worse, then go to the hospital, they will take me more seriously. Thinking that the pain is too great to keep going. Thinking that my body is shutting down, and I have a birthday in less than 3 weeks, and I can't see myself making it that far.
The light at the end of the tunnel is gone. The support that I once had is gone or is fading. The medical stuff has been going on for a year. I am exhausted. My body is exhausted. I don't know how much longer I can go on like this.

I know that I have many prayer warriors out there, so I come asking for my warriors to pray. Pray that I can make it though, pray that something can be done, pray that I can get relief from my pain, pray that I can get the nutrients I need.

An Award... from a friend

2009-06-07T19:59:00.003-05:00

I "won" an award from a friend, Jodi, Olivia's mom.

The Rules:
1 - Thank the person who gave it to you. Thanks again, Jodi.
2 - List 10 honest things about yourself.
3- Put the Honest Scrap logo on your blog.
4- Select 7 other bloggers that you think deserve this award.

Okay, so I'll try to think of 10 things that you may not already know.

1. I came within 4 months of getting married a few years back, the best decision I ever made was to call off the wedding and break-up the guy.

2. I have lived in the same town all my 28yrs of living, and the same house for 20 of those years.

3. I have been bitten by MY OWN dog(s) over 100 times, and the first"attack" required emergency surgery to put my hand back together.

4. I have always had a dog, but have had to put the last 3 to sleep, 1 each in the past 3 years. (2 of them "ate"me, and the 3rd one was geneticically messed up in the head).

5. Both of my biological grandfathers passed away last year. My dad's dad in March of 2008 and my mom's dad in Dec. of 2008.

6. I am the youngest of 16 cousins (cousin-in-laws included).

7. I went to private school for most of my schooling, except 2 1/2 yrs I spent in public high school.

8. I collect shot glasses and guitar picks, but I don't play the guitar or drink alcohol.

9. I have volunteered with 2 sets of quintuplets (that's 5 babies) in the past year.

10. I HATE watching golf on tv. I think that it's the most boring sport in the world.

5 other bloggers:

1. Mckmama at My Charming Kids

2. Emily at Really Living

3. Carla at Masto Mama Chronicles

4. Suz at Steece's Pieces

5. Jac at the Tubre Quads

That's all I have in my Friend's list.

May Update... a little late

2009-06-06T13:08:00.000-05:00

May was a very hard month for me since my orginial surgery in Aug. of '08. I spent almost 3 weeks in the hospital and had 3 "mini-sugeries", 2 of them with 48 hrs of each other. I fainted twice during the month of May, both requiring trips to the ER. On my last visit, which was the last week in May, I was sedated for 24 hrs, so I remembered nothing of where I was or what was going on when I woke up. The only good part about both my stays, is that I have had the same Dr.'s care for me on the floor both times, partly because I've been on the same floor. May also marks 1 year since this stuff has been going on. My visits to the hospital have no longer become "let's try and figure out what's wrong" , I've had every test in the book and apart from opening me up and looking at me from that perspective, which no surgeon would dare to do, because I probably wouldn't live through that surgery (I've been told that). My visits have become "pain mangement" only. I'm loaded with various drugs, enough to make me comfortable, and then given a prescription for the same pain meds, come home, use them up, and go back, and it's become a very hard cycle to break.

June has started where May left off. Only this month things look a little more desperate. I thought that had found a pain management Dr. to go see, and it was a let down. I will be chasing some other leads come Monday morning, but every Dr. has a long wait, and while I can make an appt. for July or Aug. what am I suppose to do between now and then? I am in the point of my cycle where I am almost done using my at home meds, and apart from putting a pain patch on, my only other choice is to go back to the ER and start the cycle again. However, I think a new choice has opened up in a city close to me, and I have looked into going to an Urgent Care clinic staffed with an ER Dr. that might or might not given me a prescription for my pain meds, enough to keep me OUT of the ER/hospital and enough to last until an appt. with a pain management Dr. I don't know what he will do and if I will go. The clinic is run by the 1 hospital in my town that will not help me.

So, prayer requests for June? Pray that the pain will go away. Pray that I will have enough meds or that the meds will work better. Pray that I DO NOT have to go back into the hospital this month. My birthday is at the end of this month, and I'd like to be able to say that I stayed OUT of the hospital the last month of my 27th year. That would only make 2 months out of the last 12 that I haven't been in the hospital, but it's a goal that I have made with myself. Pray for peace for myself, as I have lost my strongest ally in my battle.

I thank everyone who has continued to pray through all of this. I have learned alot about prayers this past month, and now I look at praying in a slightly different light, but I still know that God has asked us to pray in our darkest times of need.

Emily

Dakota

2009-06-04T19:11:00.003-05:00

For those that live in Austin, then you already know this story, for those that don't live in Austin it has made national news on several big websites including: CNN and Foxnews.

Dakota's mom was arrested Sunday morning and re-arrested Tuesday morning for putting human feces in Dakota's IV lines and her feeding tube. When I found this out I was and still am shocked. Dakota's mom, Emily, admitted to doing this 5 times during Dakota's current hospitalization, which is going on 60+ days. Emily also said that she knew that what she was doing would only make Dakota sicker and could possibly kill her. She said that she did it because she wanted Dakota to stay in the hospital and Emily wanted to continue getting attention.

This is so hard for me to process because I know that I have written and asked people to pray for Dakota for almost a year now, but with this news it makes me think that most of, if not all of Dakota's hospitalizations have been caused in some part by her mother.
I considered her mother a close personal friend. Her daughter and I both have alot of the same medical issues. Her mother has visited me when I was in the hospital, and I have visited Dakota in the hospital several times. I have watched Dakota grow up these past 3 years, and to know that her mother tried to kill her is heartbreaking.

Please pray for this family. The older kids (ages 6&4) are staying with their grandparents. Dakota remains in the hospital. Emily is out on bail, but is not to see her kids indefinetly. If, when she has a trial, she is facing life in prison.
Emily is a strong Christian who, yes made a mistake, but her mistake is caused my a mental illness called: Münchausen syndrome by proxy

You can read the news story here: http://www.statesman.com/news/content/news/stories/local/06/04/0604waste.html

Addict

2009-05-31T08:55:00.005-05:00

I am offically addicted to Starbucks.

I gave up my normal drink: an iced sweetened passion tea lemonade,

for a de-caf caramel frappichino.

I went into Starbucks a few weeks ago like I always do on my way to church and they were advertising for the carmael Frap., that day I wasn't brave enough to to it, but it looked tempting. I went back the next day and tried it and I am now hooked.
I know that the Frap. has been around for ever, but I have NEVER been a coffee drinker...until now. I still won't drink it straight up, but will if it's mixed in a drink.
Unfortunely for me there are 7 Starbucks within a 10 miles (or less),
but fortunely for me,
my gym is less than a mile from my house, aad I have started working out a bit more.

You may ask "why de-caf" ? Well, I started seeing a new Dr. and one of the things he said I had to stop using was caffine. No cokes, sodas, chocolate, no choclate cookies, no oreos, no cookie dough ice cream, no drumsticks... NOTHING with caffine. Something about caffine alters the brain and makes a person's mood more unstable.
I've done well, better that I expected. I haven't had any chocolate candy or cookies in 2 weeks. I had a small coke last night, because I needed the cafiine to keep me awake. I was starting to fall asleep at 6:45pm.

I will update about my hospital stay and big changes that lay head later today.

Hell Weekend

2009-05-23T22:23:00.003-05:00

So, my previous post finally got the better of me and I had a complete nervous breakdown yesterday afternoon.
And since I'm pretty sure not very many people read this blog I'm going to share some of my more important secrets.
I am human. Things right now are BAD for me. I am being honest and opening my heart, which is something that I don't normally do. I have reached my breaking point, and if life throws me another curve ball, I honestly don't think that I will be able to handle it.
First off, I am REALLY struggling this weekend with my depression and bi-polar disorder. And after being told yesterday in the ER that no psych hospital will take me because of my medical issues, I wanted to scream. I have had 3 panic attacks within less than 24 hrs. This morning after my dad bailed on me again, after promising to come over and help with "guy" things around the house I threw my phone at the wall. To say that I was PISSED would be an understatement.
Secondly, I had to put on a fentanyl pain patch ( I haven't need one in 6+ months) on, because the other pain med is doing nothing on the small dose that I am on, and I am running VERY low on my pain pills and other than waiting a week to see a new Dr. that might give me more pain meds the only other way to get more is to get admitted to the hospital.

So, in conclusion, I am having the weekend from HELL. I don't know how this weekend is going to end, up or down, in the hospital or not.

To anyone that actually reads this I need all the prayers that I can get. Prayers for my safety, prayers that my meds will kick in and start working, prayers that I can see the light at the end of the tunnel.

Secrets

2009-05-21T00:26:00.004-05:00

In Christ I am a new creation, the old is gone and the new will come again. 2 Corth. 5:17

Secrets, inner deamons that no one knows about, deep dark secrets, that you want to come out, but what will people think? What do we do with this stuff? Give it to God? Ok, God here is my "secret", take it, it's yours, I don't want it anymore. But how many times do we give God our secrets, but still struggle with them? How long do the inner deamons haunt you until you can't take it anymore? Where/What is the breaking point? Do you have someone you trust 100% to open up to? If not, what do you do? Who do you tell?

The past 6 weeks have been lies. I've put up a front, and a good one at that, to make people think that I am OK, but inside, deep inside, I am hurting. I am breaking.

I am do the best that I can with the hand that God has given me. I am living life to the best of my ability, by MYSELF, because remember, I am 27, almost 28 and still have NO friends. No friend to call at 2am crying, spilling my heart and soul. No one to call and say " hey let's do lunch, I need to talk."
I am alone in my little world, lonely, searching, looking for signs from God that things will be better, that there is a way out.

2Corth. 12:7-10 means so much to me because that is what I live day in and out. If it weren't for God's strength, my weakness would have overtaken me and I don't know where I would be.

Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it's all you need. My strength comes into its own in your weakness.Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.

Kayleigh

2009-05-18T23:36:00.000-05:00

the memorial videos of Kayleigh are up. She is a beautiful baby girl, who fought as hard as she could, but God knew that her work on Earth had been done. So, goodbye for now and thank you for all the lives you have touched. We will see you when we all get to Heaven.

http://kayleighannefreeman.blogspot.com/

A Good Day

2009-05-18T22:48:00.008-05:00

Today was a good day. Long and tiring, but good. I had an 11am Dr.'s appt. Which went well. More blood work is ordered, but I got some answers about last week's happenings. After the Dr. I went and visited Dakota in the PICU at the hospital. She looked ok, considering. She was more talkative while I was there, but she was also having an ultrasound done. Her fever got to 105 today, with no real answers of why. Her mom and I got to visit some as well. I'm praying that Dakota starts feeling better soon and home is mentioned soon. I know she's sick of being in tht e hospital and wants to be home playing with her siblings, like a normal 3 yr old - not stuck in a hospital bed, consistently being poked and prodded.

After I left the hospital I started running errands like crazy. I went to pick up some calling cards I had made, I went to the medical supply comp. to buy some materials needed for my dressing changes, I went to the mall to see about getting my IPOD fixed, and we fixed it, I went to Half-Priced Books, and bought 2 movies for $5 each, and 3 books by Jen Hatmaker . She is my pastor's wife, but she is also a Christian Devotion Book Author, and a Christian Speaker (she travels the country speaking at Women's Conference's and such). She is the nicest, most genuine person I have ever met.
After the book store, I had dinner with my mom, and then I came home and took a nap, I am just waking up from.

Tomorrow is a "big" day. I am having lunch with my father, in which I have written a speech in my head about how I will never be to old to need a father, in which I give him a book called
" Why a Daughter Needs a Dad", with certain parts starred, which are the ones I especially want him to work on or the ones I think I need the most right now.
My dad and I have never had a close relationship, at times we've had far from it. But, the older I get the farther away he gets. I don't want it to be like that. We were never close, but I don't want "us" to turn into the relationship he had with his dad. When his dad died last year, I had to plan the funeral because my dad wasn't/ didn't have a clue what he was doing. My dad and his dad never talked on the phone, just because. My grandfather was showing all the signs of Alhazamier's (sp?), but by the time my dad figured it out it was too late.
I have watched both MY parents loose their father's this past year. It was a stark contrast in how each parent grieved and then dealt with the loss of their fathers.
I don't want what little years left with my dad to get any worse than they already are. I'm going to try to do what I can to mend the relationship, but I also know that that road is a 2 way street. Nothing will matter if he doesn't want the same.

But before lunch with my dad, I have talk therapy. So I will be able to talk out my meeting and talk about what could and might go wrong or what could and only on a miracle go right.

Feeling bad together

2009-05-17T15:45:00.003-05:00

Dakota feels and looks much like I do.

I am very sore, and just not feeling well today. I have slept most of the day and slept well (for me) last night. My surgery site is very swollen and tender to touch, but I HAD to change the dressing last night. I tried to do a tube feed, but after about a hour stopped due to pain.

I had wanted to go to church this morning, and even woke up early, but couldn't talk myself into going. I want to go to church tonight, as the pastor is starting a new series, but feel not well, and can't get out of the house, much less my bed.

More bruises are coming up from my fall and I've always heard that the 3rd day is when you feel the worse. Guess what day today is?

Both Dakota and I are still needing prayers.

Thx.

The Lord is with me... us

2009-05-16T18:41:00.005-05:00

Before I begin, Dakota is need lots of prayers tonight. She's back in the PICU and on a vent and sedated. Tomorrow is Kayleigh's funeral/memorial service. For those unable to attend (it's in North Carolina) the family is asking that at 4pm, where ever you are that you release pink balloons into the sky to float away, and on the balloons please write the following:
On Sunday (May 17th), at 4:00PM(EST) after the memorial, we will be letting off pink balloons in Kayleigh's name. Tied to each balloon will be a card that reads:

Kayleigh Anne Freeman

Our One Pound Miracle from God

(6/23/08 - 5/11/09)

www.KayleighAnneFreeman.blogspot.com

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On to me. The past 48 hrs have indescribable. Thursday I remember not feeling well that day and I was "taking it easy" and had taken a nap. After waking up, I went into my kitchen to get something to eat. All of a sudden I felt very faint, I remember trying to get into the living room to sit, but didn't make it. I fainted and fell face first on to my tiled floors. I blacked out, and came to about 5 min. later. When I came to I realized I was laying in a pool of blood. I had hit my teeth and bit my lip in the fall. I laid there for a few mins to come to and see if anything was broken and if I could stand up. I got up, found my phone and called 911. The paramedics came and when they took my blood pressure it was in the low 80's (not good). They loaded me into the ambulance and off we went to the hospital. On the ride over, I called my pastor and he met me at the hospital. I also called one of my aunt's ( my mom is out of town taking care of another one of her sister's who is sick and can't be left alone). My aunt arrived shortly after I did. I had 25 x-rays done and 2 CAT scans, they could find nothing wrong. My BP never got above 100 ( still not good), but they let me go home anyways. Other than being sore and bruised, I had no other injuries. But, they also never determined why I fainted. Thursday night, I spent the night and another one of my aunt's houses, so I wouldn't be alone if something happened. I spent all of Friday morning resting at my grandmother's house ( my aunt took her to the Dr). When my aunt brought my grandmother back home, she took me back to my house.

I was not back to 100% normal on Friday. I had only been home for about a hour Friday afternoon, when 2 things happened. One, I was flushing my feeding tube ( a new one that was put in last week) and while flushing it, it broke in half and slid out. (that wasn't suppose to happen). After the tube came out, I had another fainting spell. This time I didn't fall, because I was sitting in a chair, but I did black out. Because the tube came out I only had a 1-2 hour window to put a new one in, before the hole would start to close. Knowing I couldn't drive, I called 911 again, and got another ride to the ER. This time my BP was all over the place. It would drop into the 80's or spike into the 150's ( not good either). I had more tests done, labs taken, etc, but the Dr.'s still could find no reason for my fainting spells. My tube was a whole different story. Because too much time had passed, almost 5 hrs, the hole was already closed (or so I thought). At 10pm the radiology team came and got me and took me to radiology and tried to put a new, smaller, the 1st size tube in. I was awake, but also fully sedated. The surgery was a success on the 1st try and I didn't think that it would be, and we would have to go the long way (open surgery) to put it back in. I was released at midnight to my aunt, who brought me home, and I've been home alone ever since.

I have been fine today, but have slept most of the day. I am sore from surgery and my fall. I have an appt. first thing Monday morning with my reg. Dr. to see if she/ we can figure out what is going on. This sort of thing has NEVER happened before, so we are quite confused. This morning 2 of my aunts, 1 uncle, and my grandmother left to go on vacation to New Mexico. My mom is still out of town, taking care of her sister, and God is taking care of me today.

But, I want to say that all of last night I was in constant communication (texting) with the members of my Community Group, and although they could not be with me physically, I knew that they were praying for me constantly. I had one member from my group who visited for about a hour, but the rest of the members were VERY supportive of me. I thank God for them and what they did for me last night. I have gotten several e-mails and texts from them today checking in on me too.

I had a little bit of "free" time right before my surgery and I was really freaking out, so I pulled out my Bible and started reading scripture. I started reading the 23rd Psalm, but then I found this passage:

Psalm 91: 14-16

"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."

I started reading it and praying it, and I felt this intense peace about my surgery, as I was in the room and being prepped.

I have learned or re-learned that the LORD is ALWAYS with us. The verse above says it all. So many times I think that we get too busy in our lives and when something goes wrong we think that the Lord has left us. But that is far from the truth. In our weakest times and moments, that is when Christ is at HIS strongest. And all we have to do is ask. Not even that, just believe that God is always with us and He never leaves us or forsakes us. He promises us that.

------------------------------------------------------------------------------------------------

Please keep me in your prayers. Pray that the Dr.'s can figure out what is going on and what is causing my health problems. My mom comes home tomorrow. My appt is Monday morning.

Please keep Dakota and Kayleigh's family in your prayers as well.

God is BIGGER than me and all of us.

2009-05-12T20:52:00.000-05:00

Today has been a long, trying, exhausting day. Lots of prayers, questions for God, praises to God, and no answers.

I have spent most of this year battaling illnesses, sickness, and bad health for myself. But then when you throw in Stellan, Dakota, Kayleigh, and the other babies I have been following, and fallen in love with, it stirs the pot.

How can a God, one who loves each of every one of HIS children, give and take away life at free will? How can we as humans, but also HIS children pray and pray until we are prayed out? How can we join millions of Christians around the world pray for babies, and others that are sick, and still watch God take some home to Heaven, leave some on earth to suffer and fight for their lives, and let others get sicker and put Dr.'s in their lives who can't do anything.

I have been learning these past few weeks how to pray scripture. How to use scripture when I pray. So, because of this, I have been scouring the Bible for my favorite verses. The following are some of the verses that I have been praying.

Psalms 91: 14-16

"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."

Zephaniah 3: 17

" The LORD our God is with you, HE is mighty to save. He will take great delight in you, HE will quiet you with HIS love, HE will rejoice over you with singing."

John 9:3

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.

2 Corinthians 12: 7-10 ( The Message)

"Because of the extravagance of those revelations,
and so I wouldn't get a big head,
I was given the gift of a handicap to keep me in constant touch with my limitations.
Satan's angel did his best to get me down;
What he in fact did was push me to my knees.
No danger then of walking around high and mighty!
At first I didn't think of it as a gift, and begged God to remove it.
Three times I did that, and then HE told me,
"My grace is enough; it's all you need.
My strength comes into its own in your weakness."
Once I heard that, I was glad to let it happen.
I quit focusing on the handicap and began appreciating the gift.
It was a case of Christ's strength moving in on my weakness.
Now I take limitations in stride, and with good cheer,
these limitations that cut me down to size—abuse, accidents, opposition, bad breaks.
I just let Christ take over!
And so the weaker I get, the stronger I become."

Prayer

2009-05-12T19:41:00.004-05:00

God tells us to pray. Praying is our way to communicate with God. Over and over in the entire Bible pray, prayer, praying, etc is mentioned 512 times. It would NOT be mentioned this many times if God wasn't so serious about it.
But, what happens when we pray and we feel that God doesn't hear us? What happens when we pray repeatedly for God to heal the sick, to save the lost, to help us? Does that mean that God hear us, but doesn't care.
I think that everything that surrounds the topic of prayer is a question that only GOD can and will answer... in HIS time.
MckMama wrote a beautiful post, in which she pours her heart out speaking about the very issue of prayer and how big our God is. You can read it here: "To Him Be the Glory" .

In reponse to the post, another reader posted a question on another blogger's, and the following is her question, and his response.
Question: ( from Jenny)
Okay- I was thinking of asking this question to Angie (over at Bring the Rain), but since you all OFFERED...!

Do you believe that God has His mind already made up about everything and that no matter how many people pray or how hard they pray, He will not change His course? Both MckMama and Angie have talked about this briefly, but I have to be honest, it never crossed my mind until they mentioned it. I just assumed that we could have an impact. What is God's purpose for prayer?

Answer: (from Brent)

It depends on the VIEWPOINT.

If we look through GOD’s EYES, then NO He never changes His mind in reality, because His Will is always done, and any decision He makes will come to fruition even if that decision appears to involves “changes” of decision. That’s looking at it from God’s viewpoint who is outside of time and physics.

From OUR VIEWPOINT, God does change His mind based on what we do. We can pray to change God’s mind. We can repent and God might change His mind about some punishment He planned. There are plenty of examples of this in Scripture. Many of these difficult questions about God can be more easily understood if we learn to see things from BOTH views: from God’s view (to the degree we are capable of seeing it from His viewpoint), and from OUR view as we experience life and a relationship with God. For example, from God’s view, He knew and determined from the “beginning of time” what the outcome would be for Angie. He also has determined what the outcome will be for Stellan and Abby.

His “decision” WILL come to pass no matter what anyone says, does or prays. That’s because God’s “decision” was made based on full knowledge of everything that would or could ever happen, be asked or be prayed.

From OUR VIEWPOINT, we don’t know God’s final will for Stellan or Abby. So we pray. We ask God. We petition Him to “change His mind” about Abby having Leukemia or Stellan’s heart problems. We can indeed “change” God’s mind or cause Him to act because the fervent prayers of the righteous are powerful and effective, accomplishing much.

That is from OUR view.

Kayleigh Anne Freeman

2009-05-12T07:53:00.002-05:00

I got an e-mail this morning that Kayleigh had passed away last night.
For those who don't read my blog, I have talked about her many times these past few months. For those that do read it, you know how much she meant to me and to everyone in "Blogland", how hard she has battled these past 11 months, and how happy her family was that she was doing so well, only to hit another stone wall 3 weeks ago.
Kayleigh had 1 last surgery 3 weeks ago. One that was the final hurdle in her journey to go home. Sometime during or shortly after her surgery her brain was deprived of O2 and blood, and she was found to be brain dead.
After everything that has happened, her parents NEVER gave up hope. This past week, they had come to the realization that even though her body was on Earth, her mind and spirit was already in Heaven, praising her Creator.
Last night, she was finally able to take her final breaths and completly join Jesus.
Please join me in praying for the Freeman Family today. They have 2 older kids at home, and although losing a baby is always hard, I think it's harder on the older siblings who don't know as much.

If her page gets overwhelmed, it will either shut down, or take FOREVER to load. If you would like you can leave a condolence note on my page, I will make sure that it gets to her father.

Dakota

2009-05-12T01:45:00.002-05:00

Dakota is being tranferred to the PICU in the morning, so that the Dr.'s can "bust up" the growing blood clot. But the drugs that will be used have severe life threatening side effects.
Please keep her in your prayers.

Dakota and Me

2009-05-11T11:32:00.004-05:00

First, I want to ask all my prayer warriors to pray for Dakota. She is still in the hospital, and has been moving between a normal floor and the PICU. She developed a blood clot in one of her iv's and she is STILL battaling the same infections that she has been for 8 weeks now.
I know she is tired from the hospital and that her parents, expecially mom is completly worn out. Her mom has stayed by her side, even sleeping on the couch for the past 8 weeks.
Please pray for this family. I don't know what more to ask to pray for that hasn't already been asked, but I know that the Holy Spirit interceeds on our behalf.

UPDATE on APPT:
My site looks great. The best the surgeon has ever seen.
no NEW surgery this week, but I have to make a BIG decision about my feeding tube. My surgeon said this: " you can pick the size and kind you want to have put in." Like I really want to go 'shopping' for a new feeding tube. Uh NO!!

Second, I am going to an appt. this afternoon to see MY surgeon. I'm a bit nervous, and have already packed an overnite bag, just in case he orders surgery for tonight. My tube is too big for me and the hole, so the tube is starting to be rejected by my body. It doesn't look pretty, and smells even worse. I can't touch it without intense pain, and taking tube feeds is WAY out of the question. I know it is infected because the Dr.'s at one hospital did a culture and it came back positive for a staph infection. But, the Dr.'s at the hospital that I was at last week didn't believe them and thus didn't order any anti- biotics.
Last night I slept horrible, today I am really not feeling well and need to take my meds, but can't drive while I'm on them.
If I don't update tonight, it is because I am in the hospital.
Please pray for peace for me and that all the right things will be done today and the Dr. will make the right choices concerning my care.

God Doesn't Make Mistakes

2009-05-10T20:08:00.004-05:00

After taking note from my blogging friend Kelly, I have decided to use this week to write out the lyrics to some of the songs that have helped me get through these past few weeks.

Tonight's song is by Carolyn Dawn Johnson, and it's titled: "God Doesn't Make Mistakes"
I first heard this song as I was driving around the streets of St. Louis last summer, praing that the medical treatments I had come so far for, would work again. We now know that didn't happen, but at the time, I was going through a really hard time in my life. Trying to figure out why God had placed me in St. Louis for medical treatment that HE knew wasn't going to work. I heard this song on the radio, and had to pull into a parking lot to hear it, and was crying the entire time it was on. It took several days of researching to find the song and artist, but once I did and read the lyrics, I realized that that song is me in a nut shell.

God Doesn't Make Mistakes

by Carolyn Dawn Johnson

A couple inches taller; Another size smaller; A little curl in my hair; I used to wish I was older

Now I wish I was younger; Back when I didn't have a care

Most of the time I am happy with what God gave me.

Once in a while I wish that some miracle would change me.

I'm ok with the way God made me,

I have my days but doesn't everybody.

It's not always easy for me to believe in myself, but I gotta remember:

I'm always gonna be a better me than anyone else,

And God doesn't make mistakes!

Mama says I'm special; calls me her little angel

Yeah, I could almost do no wrong; but I trip and stumble

Guess that's what keeps you humble,

But I pick myself up and I carry on.

I'll never be a flawless model of perfection,

Nobody's perfect and I admit I'm no exception.

I'm ok with the way God made me,

I have my days but doesn't everybody.

It's not always easy for me to believe in myself; but I gotta remember

I'm always gonna be a better me than anyone else,

And God doesn't make mistakes!

I'm thankful for the rainy days; they only make the sunshine sweeter

I'm ok with the way God made me

I have my days, but doesn't everybody

It's not always easy for me to believe in myself

But I gotta remember I'm always gonna be a better me than anyone else

And God doesn't make mistakes!

Not you, not me, not anybody.

How I make it through

2009-05-08T06:35:00.002-05:00

I have been asked by alot of people how I can continue to keep a positive and upbeat attitude while it feels that my world is crumbling down around me. After everything that I have been through and going through in the past 3 and a half weeks, I have a much more deeper and personal relationship with God. Because not only have I watched my world crumble, I have watched Stellan's world crumble as well. And while watching how many millions of people are responding to Stellan and his medical condition, I have learned to see God in a whole new light. But, I heave learned that until I am truly broken before God, that is when God uses people (me) the best. I found a scripture passage on a fellow blogger's site, that I am now taking as my "life passage"

2 Corinthians 12:7-10, (The Message)
"Because of the extravagance of those revelations,
and so I wouldn't get a big head,
I was given the gift of a handicap to keep me in constant touch with my limitations.
Satan's angel did his best to get me down;
What he in fact did was push me to my knees.
No danger then of walking around high and mighty!
At first I didn't think of it as a gift, and begged God to remove it.
Three times I did that, and then he told me,
"My grace is enough; it's all you need.
My strength comes into its own in your weakness."
Once I heard that, I was glad to let it happen.
I quit focusing on the handicap and began appreciating the gift.
It was a case of Christ's strength moving in on my weakness.
Now I take limitations in stride, and with good cheer,
these limitations that cut me down to size—abuse, accidents, opposition, bad breaks.
I just let Christ take over!
And so the weaker I get, the stronger I become."

I don't know how many times I have begged God to "take me now", because I thought that I couldn't handle life, being sick, etc. anymore. But after reading this passage, in this version, I realized that I had it all wrong. Instead of begging God to "take it away" I have started asking God to reveal His strength to me. Because when I am most broken and at my weakest point, that is when MY God is strongest. And it is through that strength that I can continue living each day, with the pain and no answers. I have stopped looking at my medical stuff as a curse or something that I did wrong to deserve all this, but I also have another life verse in

John 9:3 that says "but this happened so that the work of God might be displayed in his life."

My hope is that someone somewhere will see that everyday I get up and try my best to push through the pain and live my life, someone will see that and ask how I can do it, and in that moment God's grace, love, and mercy will shine through and I will be able to tell that person that I wouldn't be here today if it weren't for God's strength given to me, and to all of us... if we just ask. As of today I don't know what the future hold for me. I will be making phone calls to several high profile hospitals around the country, hopng that someone has heard of my problems and has the cure or right treatment, since all efforts here in Austin have been exhausted. Returning to St. Louis for medical care is no longer an option either. I am taking "baby steps" to get my life back on track. Going back to church last week and this week is the first step. Finding my "Family of God" is the second step. Keep moving forward is the 3rd step. I did that by volunteering with the quints on Friday, and if my health stays the same, that will become a weekly thing for me. But I also know without the love and support that I have been getting from people, and all the prayers that I am getting are helping in a HUGE way as well.

Thank you to each and everyone of you for praying and for interceeding to God on my behalf.

I'm Home

2009-05-08T00:07:00.003-05:00

First off, I want to talk about Tricia. She fell in a parking lot today and busted up her hands and knees pretty bad. She went to the ER to get cleaned up, but she is in ALOT of pain. Please pray for her, for quick healing, and that the pain would go away quickly.

Secondly, I AM HOME!!!!!!!!!!!

I came home from the hospital this afternoon. I just woke up from a nap, so sleeping tonight may not go over real big.

I am home, but things are not all good. My mom had cleaned my room, made my bed, and had candles burning when I got home. I took about a hour nap, I started doing to bue feed, and then ripped the tap off ( which is holding the tape in place), and that's when I saw it! My body is starting to reject the new feeding tube. I don't/want to go into details on why I have a new tube, but let me just say this new tube : the diameter of the 1st tube was . 10 in . It was small/ tiny enough to use for babies in the NICU to get food in them. The new tube ( that was placed by a radiologist, not a surgeon) has a diameter of about 1/2 an inc., which is MUCH bigger than the first. Because this tube is so big, I had a specail test yesterday to findout if it was 1 "usable" 2 "usable for long terms" . Both tests came back showing yes. When I took a bath this afternoon to clean the tube site and all the adhesive off my body, that's when I noticed that my body is beginning to reject the tube. It's just too big. I called my surgeron and I have an appt with him Monday afternoon. I'm hoping and more the willling to have another surgery to place a correct size tube. Please pray that all goes well on Monday.

I'm in the hospital

2009-05-05T12:51:00.002-05:00

Miss me much this past week?
I've been in the hospital, and my dad just brought me my laptop. I've missed blogging, and I miss being home, but I am glad that I am here getting the help I need. While I won't go into details I will say that the Dr.s are trying to figure out what is causing my pain when I eat and do my tube feeds. I've had 2 surgical procedures last week to work on and put in a new feeding tube after the first one fell out due to a Dr.'s mistake.
I am hooked up to a PICC line, and a PCA (pain pump), and the normal liquids. Yesterday I started "soft mechanical" diet food. Meaning: eggs, sandwiches, grits, soup, pudding, etc.

Please keep me in your prayers. I am having several anxiety attacks a day, and the anxiety is causing my bp to sky rocket. It's been in the 140's.

I'll post more when I get home... whenever that will be.

Monday Updates

2009-04-27T18:45:00.004-05:00

I have REALLY GOOD news, really BAD news, and "Is it Over yet" news.

I'll start with the good. Stellan was discharged from the hospital this morning and will be returning home TOMORROW!!! His heart is better, he is looking and feeling better and boy does his mom want to be home.
Bad news, Dakota has taken a turn for the worse. All I know is the she has a really HIGH fever, her BP is all over the place, and she has several infections she is trying to fight. She was moved from her regular room to the PICU this afternoon.

IIOY - I made another trip to the ER last night. Had 1 test ran, loaded up on pain meds, and was sent home. I have an appt. with MY GI Dr. TOMORROW afternoon. Things will be said/ done at this appt. that will change my life. I won't leave unless this happens. The Dr. may have given up on me, but I have not given up on me. Pray that things go well and I get answers, and if not those than the help that I need NOW.

Please also take time to visit Kayleigh & Gavin's links to the left of this post. They are both need extra prayers this week. For Kayleigh, as she fights to live. For Gavin as he fights his disease and subsquent hospitalizations.
Tricia is at home and doing better.

in MY weakness HE is strong

2009-04-25T15:06:00.004-05:00

I hit rock bottom earlier this afternoon.
I recieved an e-mail from another blogging friend, one that I'd been waiting for for a while. While reading her e-mail and then replying to it, I started crying, and didn't stop for almost 45 min. later. Reading ALL that I have been through, not just in the past year, but my whole life, was vary harrowing for me. It brought back a flood of emotions, replay's of my life, and it made me even more determined to find someone who KNOWS what they are talking about reguarding my medical care.
During my meltdown, I made me a iTunes playlist of songs that would help me get through my current situation. I took my Bible, started reading one particular passage, and started praying. With the music playing in my ears, scripture in my head, and God filling me with HIS strength, I drifted off to sleep. Awakeing almost 2 hours later, feeling somewhat refreshed, and a little bit stronger.
Please continue to keep me in your prayers. This weekend, I feel will not end up good, meaning I will find myself in the hospital by the end of it. I'm hurting, I can't keep food down, tube feeds hurt.
I want to share the scripture passage, that I have taken to be my new life passage.

Ch- Ch- Ch- Changes...

2009-04-23T17:15:00.009-05:00

Today was another good day, but BIG in changes.

I saw a new Dr. today and spoke with (and never speak with again) a different one.

The old Dr said this: " I will see you, but not prescribe any drugs!?!?! WTF?!?!?" OK, you're a pain management Dr, I have a current prescription from you and you will not refill it and not give me any thing to help my pain.

Finding a new pain management Dr. is number one on my list for Monday morning.

I also saw a new Dr. this afternoon. He was nice, I liked him, he has this great "treatment" plan in mind, but it will takes many weeks, if not several months for the new drugs to kick in. In addition to the new meds, I can no longer have ANY of the following:
caffine (including, but not limited to CHOCOLATE, cokes, tea, chocolate chip cookies, none)
decongestants (otc cough syrup), no hydro or oxy codine (won't be a problem, I'm allergic to codine) , no ativian (my panic attack med).

But, the new drug is something that I am ALREADY on, in small doses, and we're hoping that this 1 drug (in a higher level dose) will help all 4 issues. Plus it cheap and generic, good for someone with no insurance.

In additions to starting this new drug, I am going to have some blood work done to test my thyroid and my estrogen levels. He thinks something maybe off on both of those, and seeing that both of those topics run in the family and my mom and had surgery to remove her thyroid, I can see where he is coming from.

I am really hoping that from the standpoint where I am coming from that this Dr. will help me get some of my life back on track.

On a similar, but bit different side note, I have been talking to the office manager at my GI Dr.'s place, and at this point I have about 2 options: 1- wait it out, let the pain become unbearable, to go to the ER, get admitted, and my GI will be able to do something NOW instead of having to wait 2 months to get into the office to see him, so that he might be willing to do something. Choice 2 - do nothing, let the pain rule my life, stop all eating & tube feeds, wither away and die.

Choice 2 is NOT the option I am taking, so somehow choice 1 is my ONLY option at this point. However, I have promised myself that I would NOT go to the ER this month, and there's only a few days left.

This is all becomeing very redundant to me, and I'm living last year over in my mind. The only difference is I'm NOT in the hospital and I'm NOT on pain meds!!

Oh I just want this nightmare to go away, and I want to find a DR. that knows something, anything about my conditions, and can help me.

Updates and prayers.. many of each.

2009-04-22T20:07:00.008-05:00

Two posts in one day, wow.

First off, Kayleigh is holding her own.
It appears that sometime during or shortly after her surgery last week that her brain had lack of blood and oxygen. But, again it's too early to tell. The good news is that she is coming down on her breathing settings (she's on a trach.), but since the surgery she is NOT breathing on her own. She is no longer on pain meds, her bp is normal, and her oxygen stats are on room temp. She has "woken" up, and moved around, but she has a blank stare and repetive movements that are consistent with being brain dead and a sign that something is very wrong. Her parents are asking for some additional tests to be done to see if there is anything that can be done to "fix" her or to find out what went wrong.
Please continue to keep this family in your prayers.

Secondly, I realized this afternoon that I didn't update about Stellan's surgery yesterday. He was the reason I didn't sleep night before last. I was awake praying and worrying all night. But, Stellan made it through the almost 5 hr. (suppose to be 3hr) surgery. Every possible scenario that could have happened did, but Stellan made it. God was truly at work in Stellan yesterday. He does have some residual/maybe permanent heart damage, but his heart is still too small to tell for sure. His mom posted about everything that happened during the surgery on her blog.

Third, last Saturday I went to the new Children's hospital in town to visit Dakota . Her mom came and visited me last year when I was in the hospital, so I returned the favor this year. We had a great visit, but sadly, Dakota will not be coming home anytime soon. Her situation is VERY complicated, so if you want to know more, visit her page. Please just pray for this family, as Dakota has been IN the hospital more this year than OUT of it, and it's only April. With this current visit, she has atleast 2, maybe 3 more weeks. Dakota has 2 older siblings at home, so time with mom is a bit different now. Please pray that the next few weeks go by quickly, and that this will be her last hospitalization for a while.

Fourth, Tricia is back in the hospital with pneoumnia. It has been a year since her double lung transplant, and she's been doing well. A few weeks ago she started feeling bad and could tell something wasn't right, but her tests came back fine. She went to the ER yesterday morning and that's when they found the pneoumnia. Please pray that she gets better quickly.

And lastly there's me.
I have been working all week on a post, and it still isn't done. It has never taken me this long to write a blog post. But, this post is very deep, and it is coming straight from the deepest depths of my heart. It has alot in it, so I don't know if it will be published in sections or all at once.

Today was a good day. I had lunch with my family out of town to celebrate my cousin's birthday. I couldn't eat but 3 very small pieces of a cheese quesadilla. Then the pain set in, and I am still hurting. While driving home, I called my GI Dr. and spoke with the office manager for 20 min. (supposedly there's a flag on my chart that whenever I call in, I talk to the office manager before making any appts.). I told him the same thing I've been saying for almost a year now. I've had 2 botox procedures in the past 8 months, neither helped or worked. I've been off ALL narcotic pain meds for the past 3 weeks, pain is still there when I eat and equally when I do my tube feeds. And hearing that in the year 2009 there is NOTHING that can be done is no longer acceptable by me. I want answers, I want to eat a "real" meal again. I don't want to be in constant pain. I don't want a feeding tube.
Tomorrow I have 2 appts. - a Dr.'s and my theraphy. I'm also having lunch with a really good friend. We're going to Souper Salad, since I know that I will be able to eat soup.
Friday is a big day as I will be volunteering with Austin's newest quintuplets!!! The 5 babies were born in January, and being a nanny and already having volunteered with Austin's first set of quints, I wanted more fun. I am doing this on a volunteer basis, I love babies & kids, God has given me a gift of working with babies & kids, why not put my skills to good use. Besides, with having quints, help is always needed and wanted. Hopefully my health will continue to be good and I will be able to help on a weekly basis. Something to keep me busy and out of the house.

Thanks to all those who have been praying for the babies this week. Sometimes, I wish that more people read my blog, but then I remember in time maybe that will happen. For now I am OK with the 10 or 20 people that read it. That allows me to post more meanigful things and know that it won't be traveling very far.

Kayleigh

2009-04-22T16:34:00.002-05:00

I woke up this morning to find a message on my twitter page about a friend of mine's baby girl - Kayleigh . I know that I have written about her before. She is a micro-preemie (weighed 1lb 1oz @birth). She's been in the NICU since her birth, almost 10 months ago. She is the baby who had a huge abdominal surgery last week, very similar to what I have had done. She had a g-tube put in, had a fundoplication, and had 2 hernia's removed. This surgery was the last "big" thing that needed to happen before she could be discharged. Things were progressing the way they should be after surgery until about 36-48 hrs ago. But it appears that something has gone very "wrong" in the past few days. It is believed that Kayleigh may have had a stroke and that she is now brain dead.
I know that I will never be able to feel what her parents are feeling now, but I have personally spoken/ written/ typed (whatever) with her father several times, and I have seen that each time Kayleigh comes close to death, God provides a miracle and she fights to live on. I know that her short time on earth has been for nothing.
Please join me, and my other blogging friends in praying for Kayleigh. This baby, more importantly this family has touched so many people on their journey these past 10 mts. this wasn't suppose to happen.
There is a prayer button to the left of this post that will take you directly to her page, but since word of this has gotten around, it is VERY hard to get onto her page. The link above (her name) might work, but feel free to leave comments on my blog and I will pass them on to her father.

New person & Stellan's heart surgery

2009-04-20T20:25:00.003-05:00

Tonight I am very heavy hearted. For several reasons.

Stellan took a turn for the worse this evening. His SVT came back out of the blue and he has NOT been able to break out of it on his own and the drugs are not helping. He is having heart surgery TOMORROW morning (8:30am Boston time) and after reading his mother's description of what is suppose to happen, I started crying. Stellan needs all the prayers he can get tomorrow. Only a miracle will heal Stellan's heart tomorrow, but thankfully I KNOW the Great Physcian.
Ephesians 3:20 sums what what needs to happen tomorrow in order for Stellan to live and the surgery to be a success. "Now glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope."
Please take time to read Stellan's blog tonight. His mother gives SPECIFIC instructions on how and what to pray for them tomorrow. Prayers for Stellan's family (in Boston and at home in Minnesota), for the surgeons, and all involved tomorrow.

I had talk theraphy this afternoon. It was exhausting for me, I talked about alot, but what I said is life changing. It was my first session since going through my "trial" that started just under 3 weeks ago. My therapist actually looked at me and said that, not only am I a completly different person than I was 3 weeks ago, but I look better too. I told her that after going through what I did I feel like a different person. My mind is clearer and I have a much better outlook on life. But, with that being said, I am learning to be a different person. I am taking baby steps, and already have 2 behind me. 1) I went to church yesterday morning. The preacher's sermon was on trials and spoke right to me. 2) I have turned to God, scripture, and my Christian music while going through this. I have fought my battles and demons these past 3 weeks and won, something that I didn't do before.
I have more on this in a post I'm working on later.
I see God more clearly than I ever did before.

Early Monday Morning

2009-04-20T07:51:00.002-05:00

It's 7:30 Monday morning, and I'm awake after only 4 hrs of sleep. I'm going back to bed in a little while.
I am also working on a really indepth and maybe long post on enduring tests and trials along the road of life and how the family of God, more importantly a church family can help a person through those hard times.
Hopefully I'll have it up and ready by tonight.

Have a happy Monday!!
PS:
Yesterday was the 14th anniv of the OKC bombing and today is the 10th anniv. of the Columbine shootings. Please join with the to remember and pray for all the victims and their families.

Prayers for Matt

2009-04-17T20:18:00.004-05:00

UPDATE 4-20-09
Baby Matt has entered into his Heavenly Father's arms. Please pray for his family in their time of grief.
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I know that I have wrote about this baby before, his name is Matt and he was born in January of this year. His mother gave him up for adoption a short while after birth. Matt was born with a terminal illness, the entire front part of his skull (where his brain is suppose to be) is all fluid. It is a miracle that he has lived this long. I just got word that Matt doesn't have much time left on this earth. His family has gathered to say their goodbyes and is ready for him to leave this world and enter into the arms of his Heavenly Father.
Please join me in prayer as I pray, along with his family that his death will be short and painless. For more info and to read about his journey please visit his page here: http://prayformatt.blogspot.com/

Updates on the Babies... God has been good today

2009-04-16T17:26:00.005-05:00

God has been good today.
Things have gone well for Kayleigh and Stellan.
First off, Stellan is in Boston at the Children's hospital. He is in the CICU: Cardiovascular Intensive Care Unit. Since his arrival early this afternoon he has had more labs done and a VERY indepth echo done and some chest xrays. His mom got to talk to the heart Dr. there and things are looking promising.
Please keep this family in your prayers. Stellan has 3 older siblings at home who are probably wondering what is going on and where their mom and baby brother are. Please also keep Stellan's dad and whoever else is taking care of the older children in your prayers. Pray for patience and that these kids will have some sense of understanding.

Secondly, Kayleigh made it through her surgery with no problems. However she is having a hard time recovering. She is very swollen, she's having a hard time keeping up with her stats, and she's just not feeling good. But, all of that is VERY understandable considering what she went through this morning.

Third, is Dakota. The only update I have for her is from this morning. She was still running a high fever at 10am, and because of that she was packed/covered in ice, in attempt to lower her temp. She was up for many tests and scans today to try to figure out what is going on with her.

I had a good day. The best I've had in a week. I got out this afternoon for about a hour and then came home and walked my dog around the block. I am over the worst of this time, but have a ways to go. Today has been exactly one week since everything started, and while I thought it would go by slowly and have a much different outcome, it has gone by very quickly and I have done well. Thanks to ALOT of prayers, and support from my mom and family and friends.

Big Day in Small Babies Lives

2009-04-16T06:50:00.002-05:00

There are some babies in my prayer list that are having a BIG day today. And I'd like to write and ask for prayers for them today.

First off is, Kayleigh. She was born 6-08 weighing 1lb 1oz. Today, she's almost 10mts old, but has never left her bed in the NICU. She's fought so hard to live and make it this far. This morning she is having surgery that will help her to be able to come home soon. She's having: a g-tube placed (feeding tube, directly into stomach), Nissen (surgery to connect esophagus and stomach tighter {helps keeping acid reflux away}), Bilateral Hernia Repair & a new Central Line Placement.
Please pray for Kayleigh. I've had 2 of the above surgeries before, but having 4 things at once is HUGE. Pray that she can make it safely through and pray for wisdom and steady hands for the Dr.'s and nurses.

Second, is Stellan. He, his mom, and a PICU nurse are flying to Boston today in prep for his heart surgery, sometime next week. Stellan took a turn for the worse earlier in the week, and that sealed it for him for the Boston trip. Please check out his page for more info as alot has happened this week.

Third is Dakota. After being home from the hospital for only 2 days, she made her entrance in the ER late Monday night with a fever of 105. The Dr.'s started her on heavy duty anti-biotics, and pulled her PICC line (thinking that was the source of the infection), well it's not or wasn't because as of 2am this morning her temp was 106. Please pray that the Dr.'s can find the source of the infection and get her fever under control. Please pray for her mom as this is the 4th hospitalization in almost as many weeks.

As for me, I am feeling good. Alot better than I did last week when everything first started. I got out of the house yesterday, and may do so again today. I spoke to 1 family member on the phone yesterday (first time I've talked to anyone in a week). My only issue is my sleep. Because the meds I'm on make me sleep during the day, when night rolls around I'm not tired. I try to sleep at night with the use of sleeping pills, but they do nothing. Please pray that I can get back on a regular sleep pattern and start sleeping soundly.

With God ANYTHING is possible

2009-04-13T12:40:00.003-05:00

This weekend has been one of the hardest weekend's I had.
Last Wed. I got news that would turn my world upside down. And while I won't go into details, I will say that I was not expecting it. After I left the Dr. I prayed and cried the whole way home. I didn't think that I was strong enough to go through this. I came home, shared with my mom, and decided what was best for me: to go through what I needed to and come out a better person for it.
After the decision was made, I sent out an e-mail to 4 of my closest friends and biggest prayer warriors. While I didn't come out and tell them what is going on, I did ask for their prayers for my well-being and mind. I got responses back immediatly and knew that they were the start to my prayer chain. I then put up notices on Facebook, asking my *friends* to keep me in their prayers. From those postings, I have gotten replies. Knowing that so many people have been praying for me, I think has made this weekend a bit easier.
I have spent the past 4 days sleeping, praying, thinking of all the GOOD that will come from this hard trial. Saturday night I made me a Easter song playlist on I-Tunes. I listened to that as I went to sleep. I woke up Easter afternoon, knowing that this was the day, so many years ago that MY Savior rose from the dead to save me from all my past, present, and future sins.
Here I am going through the hardest time of my life, but still praising and celebrating God and what HE has done for me. It will be an Easter I won't forget.
As for today, I am exhausted. Even though I have spent many hours sleeping, I am still exhausted. I am sore and in pain, and laying on heating pads only do so much.

I don't know how many more days I have of this, but this I know: Jesus has taken me this far, and HE won't turn His back of me now.

More to come later...
Please keep praying.

Prayers for Stellan and Dakota

2009-04-07T22:31:00.005-05:00

***Updates***
Stellan is still in the hospital, but no longer in the PICU, he was moved to a normal room, after spending 3 weeks in the PICU. Since getting a new Dr, the meds are working, but he is still having SVT episodes. He has to go 72 hours w/o ANY SVT episodes, before he can go home.
Dakota went home from the hospital Saturday afternoon. She will continue to get her TPN feedings through her PICC line. She is doing MUCH better now that she has fluids in her, and is feeling good.
________________________________________________________________

Both of these sweet babies need prayers as they are both having small procedures to put in more permanent IV lines tomorrow morning.

Stellan is having a Broviac catheter put in (It's a very permanent central line that goes right into his heart and is typically placed in the chest, with a tube going under his skin from the heart to the exit location.). Stellan has also been taken off all IV meds and is only on oral meds. However, if the oral meds don't work by the end of the week, then he will be transported to Boston Children's hospital to have an ablation surgery. This surgery is VERY risky in infants.
Stellan continues to be in SVT, as his heartrate is in the high 200's.

Dakota is having a PICC line put in. (A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time, put into the upper arms area). Through the PICC line she will start getting TPN ( being fed through the IV, rather than eating or using liquid formula).
Dakota was taken to the ER last night because her heartrate was VERY low, in the low 60's. She has also been feeling bad for the past few months, and having a hard time taking her g-tube feeds (feeding tube through her stomach). She has become very lethargic recently, and is not acting like herself.

Please keep both these babies in your prayers tonight and tomorrow. Please also be in prayer for their families. Stellan is going into day 17 in the PICU and this is Dakota's 3rd hospitalization in 6 weeks.
You can find more info and the latest updates of both of their blogs. Just click their names and it will take you there.

Really Good Day & Prayer Updates

2009-04-02T23:02:00.004-05:00

I had a REALLY good day today!!!
It started bad. I was suppose to have lunch with a really good friend (she was like an "other" mother while I was growing up), but when I woke up this morning, I wasn't feeling well.
I took some pain meds and rested for a while, and then decided that I NEEDED to run my errands. I had a list of them and it was growing.
I ended up going everywhere today: Blockbuster to return a movie, the post office to mail a Netflix back, the bank, Wal-Mart ( I actually went twice, to 2 different ones), my dad's house ( whom I haven't seen in 2 months, he went to Israel in Feb. and he got me a lot fo cool stuff), Lowes ( to buy some gardening stuff). Then I went home for a while, and then my mom called, and I met her and my grandmother ( and later my aunt and uncle showed up) at the Cracker Barrel. I got a "big dinner", thinking I could eat it, because I hadn't eated anything else today, but couldn't eat but a few bites, because nothing would go down.
I came home, go back into my PJ's, and then made a late night trip to HEB to get some groceries.

I've just felt really good today (other then the intense pain after eating). I've been more up and about today than I have in 6 weeks.

While I've been a home, I've been watching CSI:NY. My fav. of the series. I'm on Season 2, disc 6. There's 4 season's on DVD. I'm half way through.

So, all in all I had a pretty good day. Tomorrow I'm getting my hair cut. First time since Oct. when I cut off 9 inches to give to Beautiful Lengths ( think Locks of Love, but by Pantene).
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Prayer Requests and Update on Stellan

I have a couple of prayer requests and an important update on Stellan.

I'll start with Stellan.
Stellan is at 24 hours and counting with no SVT and his heart beating in Normal Sinus Rhythm!
But, he has tested positive for the rotovirus. (stomach flu for kids).
Just because he's been SVT free for 1 day doesn't mean he's out of the woods, he's no where close to that. Check out his Mama's blog for more info.

My friend Emily, is in labor (if she's not yet had) a beautfiul baby girl named Abigail Joy. Emily lost her other baby girl, Miller Grace 18 months ago, and has been on a journey with God to learn about His redemption and peace after such a loss. Check her page for an update on details on Miller Grace's story.

You may have noticed a new prayer button, for a cute little boy to the left of this post. His name is Gavin and he's almost 4 yrs old. Gavin was rushed to the hospital this afternoon, after it was discovered he has some chronic internal bleeding. He is having an endoscopy tomorrow afternoon to see what's going on. Gavin has alot of the same digestive and intestinal problems that I do, so I know what he is going through and how he feels.

Thank you for praying for Stellan and for the ones listed above.

Prayers Still needed for Stellan... & an update on me

2009-04-01T12:31:00.002-05:00

Stellan is STILL hanging on. He had a better weekend, but is still fighting the SVT. His momma is SO tired and stressed. Please keep Momma in your prayers too.
Stellan also made the news yesterday in his home town. Check out this news segment. http://kstp.com/news/stories/S859209.shtml?cat=1
Please continue checking his Momma' page for updates. http://www.mycharmingkids.net/

As for me, I made another trip to the ER on Sunday, due to pain. It was a nightmare, and didn't really help. I ran out of my pain meds and have been really miserable without them. I went to the Dr. this morning and I am back on them and feeling somewhat better.

Not Me Monday

2009-03-30T15:40:00.004-05:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

As we are all aware, Not Me! Monday was started by MckMama. "I created Not Me! Monday for the purpose of confessing our shortcomings and imperfections to each other since, after all, we are all only human!" (MckMama's words)

However, this week, in honor of her and Baby Stellan, we're doing "Not Me! Monday - Stellan Style!"
This week, it's our chance to HONOR MckMama and Stellan with our Not Me! Mondays.

This week I Did Not post all my status updates about Stellan. Asking people to pray for him and visit his Mama's blog.

This week I Did Not tell the nurse in the ER yesterday all about him and his story.

This week I Did Not show MckMama's Prayer Post to my therapist and talk about how I could relate to everything she had written. We Did Not spend 30 min talking about Stellan and MckMama.

This week I Did Not check MckMama's blog and twitter page every 30 min. for updates.

This week I Did Not post about Stellan in most all of my blog posts.

This week I Did Not spend most of my waking hours thinking about him and praying for him.

This week I Did Not e-mail some of my friends asking them to pray for him.

Friday night post

2009-03-27T23:07:00.003-05:00

This has been a LONG week.
First off, Stellan is still hanging on. This week has been amazing as far as his life and his family are concerned. While he has been in the hospital fighting for his life, there has been a prayer blog set up for him here: http://prayingformckmuffin.blogspot.com/ and someone set up a prayer group for him on Facebook. I am in awe to see how so many strangers can come together to support, love, and pray for a 5 month old baby and his family, especially his mom.

I am still not feeling well. Well, actually I think I felt better for about 2 days, and now I feel bd again. Of course Texas weather isn't helping. For the past 3 days we have had thunderstorms and hail with each of them. We've had 2 cold fronts come through in a week and today it was 82 degrees and the wind was blowing really hard. The molds and tree pollen are really high, which is probably why I don't feel well.
My pain is getting worse. I have started a pain diary, in which I am writing down how many pills I take and when. I have taken much more these past few days that I thought I was.
I haven't slept much this week. My dog is terrified of thunderstorms (the thunder and lighting mostly), and she has been freaking out, which cause me to loose sleep because I have to be up with her to try to keep her calm.
I am hoping to sleep well tonight.

Well, that's all for now, I'm off to bed.

Please pray for Stellan

2009-03-25T13:49:00.001-05:00

Stellan is NOT doing well, and has started to take a turn for the worse.
Please keep praying for him. For up to date info, see Mckmama's blog: http://www.mycharmingkids.net/

URGENT prayers needed for Stellan

2009-03-23T13:36:00.003-05:00

I know that I've mentioned Stellan before. He was the little baby, who in his moma's tummy was said to have SVT( an irregularly fast heartbeat). Thousands around the blogging community and the world started praying for him and a miracle happened. The SVT went away, and Stellan was healed. At his birth the Dr.'s were prepared for the worst to happen. It NEVER did, and Stellan was born happy and healthy.
***SVT is Fatal in anyone, if the Dr.'s can't get the heartrate down quickly***

Well, as of last night, he is in Children's Hospital and he is in SERIOUS condition. His SVT is back and his heart is beating is 300 bpm. In the ER last night the Dr.'s were trying anything and everything they could think of to help him... nothing worked. He is sedated, and is probably intubated by now to help him have a chance to calm his body down and let the tube breathe for him.

This afternoon, thousands around the blogging community and world are praying for another miracle. Pleae keep Stellan in your prayers. Please also pray for his mom: MckMama, as she is up there with him, running on no sleep, while her husband is at home with their other children who are also sick.

http://www.mycharmingkids.net/

Mid-Week Update

2009-03-19T11:41:00.003-05:00

Well, I am not going to Dallas this weekend. I can't seem to feel better and by mid-afternoons my voice is gone completly and my coughing fits have started. If this is the way it is, I don't want to travel somewhere for 4 hrs and spend all weekend away from home and my bed.
I am still not "officially"sick, I just have a sore throat, cough, congestion, and on and off low grade fever.
This morning I went to the pain management Dr. for a med check, and those appts. usually take between 1-2 hrs, this morning took less than 20 min. Everything went fine, except that according to their scale, I've lost 6lbs in 10 days or 14lbs in 4 weeks. That's what happens when a person doesn't eat much other than baby food, pudding, and jello. According to my scale, the weight loss is more drastic.

The weather here has been in the mid 80s all week, but this weekend is suppose to be in the 70s, so I'm going to try to start a little garden or just but some plants/flowers and put them into pots. We'll see.

2 important anniversaries this week

2009-03-17T21:27:00.005-05:00

This week is a very somber week for me. Sunday the 15th, marked the 1 year anniv. of the death of my dog Zephyr. I know that some of you are thinking, but it was just a dog, but Zephyr was so much more than that. I got Zephyr from my uncle, she was the runt of 10. I got her when she was just 7 weeks old. She NEVER left my side. She slept/cuddled with me every night. She was the type of dog that I could let off the leash and she'd stay close, she LOVED to swim and be in the water. We went swimming together often. She was my best friend. I got the the day I came home from St. Louis the 1st time we went because of my esophagus. She saw me through the next 2 years of some really hard times.
Last year my mom & I decided that it was best to put her to sleep due to her totally destructive behavior. Yes we did puppy class, and all that, but it was later determine that something was genetically wrong with her and her whole litter, as all the puppies were eventually put to sleep. I remember the Vet. giving her the shot, and her falling asleep in my arms.

The next day is THIS Friday the 20th, which will mark the 1 yr anniv. death of my grandfather. Now, my grandfather and I weren't close, but he was still family. He died after suffering several massive and many strokes. The 1st massive stroke he had was on March 4th, and he would go on to suffer many other mini and some other large strokes over the next 16 days. I know that he is in Heaven with his 3 other wives that went on before him.

Zephyr Grandpa JO

Please keep me in your prayers as I go through this week. This maybe the last time I post for awhile. I may be going out of town this weekend for a King-Tut exhibit with my family. The only thing keeping me from going is the fact that I am getting sick, but am not sick yet. I just can't seem to get over it. I've been drinking OJ and taking robatussin for the past few days. Please pray that I don't get sick, and can go this weekend.

Updates on Me, Abby & Dakota

2009-03-13T22:57:00.004-05:00

I know that I haven't really posted anything about me this week, everything has been focused toward Dakota and Abby. So tonight is for me, but also for Abby and Dakota, since things are happening in both their worlds.

Me first.
I have been very bloated/swollen in my abdomen all week, and it is not getting better. I was going to do tube feeds everyday this week, but when I didn't digest Tuesday night's tube feed, I knew that I shouldn't try again until I got rid of Tuesday's feed. I am very uncomfortable. I've been trying to walk more and drink more water, but nothing is happening. I've also been taking Miralax and digestive health pills, but no effect yet. My pain, I think is leveling out. I've been taking less pills, more hours apart.
Most of this week has been wet, rainy, and cold; and I am starting to feel the effects from that. My throat is getting sore, and my lymph nodes are starting to swell. I really hope that I am not getting sick, but just fighting something. This Sunday is my aunt's birthday, and I really wanted to go to her party, but if I'm sick, I won't be going anywhere.

Now, for the little girls.
Dakota, was suppose to go home today, but didn't make it. They will try for tomorrow. Her volume of feeds per hour has been going up and down, and it must be at 50ml/hr for her to go home. She's was at 40-45ml/hr, most of the day.
Abby, is taking a turn for the worse again. Her infection is getting worse, and she has no blood cells to fight the infection. Her dad said that she is starting to look "pregant" and that she is so swollen that her veins are showing through the skin. PLEASE pray hard for her. She is only 4 yrs old, and she shouldn't be going through this. She needs a miracle now, and I know that God is still in the business of working miracles.