Fall 2011

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.

Pray for Chrissie

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.

Big Prayer Request/Update

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

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.

Friday morning

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

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.

Urgent Prayers Needed

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

Long Summer Days & Stellan

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

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.

Stellan and update on my appt.

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.

Early week update

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.

May Update... a little late

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

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

God is BIGGER than me and all of us.

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."

Dakota

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

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.

Updates and prayers.. many of each.

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

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

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.

Prayers for Stellan and Dakota

***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.
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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.