Still Here

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

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.

Big Update

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.

I'm home after surgery

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.

Still Here

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

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!!!!

Thursday night update

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.

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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.

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

I'm Home

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

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.

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.

Something Old, Something New

After spending 4 days in the Hospital, I am home. I only had 2 tests ran, but this time around we weren't really testing for anything. The only results were that I have anemia. I am still recovering from spneding 4 days in bed, and the PICC line that was put in, I am having some troubles healing from the tape and the line that was put in, and then taken out.
The conclusion that we came to is this one:
The feeding tube (my J-tube. which is in my small intestine), will STAY in. I will start using it, and start on the smallest feed possible ( and slowly increase my feeds), 1 can a day, which is 8 fluid oz and 285 calories per can. One can will take about 3-4 hours to dispense by using my pump.
For the rest of my food intake I will start eating baby food ( for fruit wise). I am buying a blender/ food processor tomorrow to make smoothies, slushies, to puree some fruits and veggies. I will also be eating soft, non-textured food: jello, pudding, baby fruit, soup, popsciles, etc.
Because I am also watching my salt intake, I will stop eating frozen meals ( not like I gorged on them in the first place). I will watch my soda intake, and try to drink more water and non-sugary juice.
All of my "extra" food that I have and will not or cannot eat, I am donating to a local food bank.

On Monday I am returning to my pain management Dr, for a check-up for my pain. While in the hospital I was getting a HIGH amount of pain meds, which worked.

I enjoy reading people's comments, and apprecaite the prayers.

Home from the hospital

I am home from the hospital. I got home about 2pm this afternoon.
I am feeling better and not is as much pain as before.
We met with a dietican to talk about my eating and tube feeds, and I'll write about that later.


Thanks to everyone for praying, and I'll update either later tonight or tomorrow.

I'm in the hospital

We didn't make it to the ER till about 3pm. The same time as about 4 ambulances and the Emergency Helicopter. We had to wait almost 2 hrs just to get to a room.
This time I didn't have every test in the book done, just a x-ray and CT Scan. They were both fine. After giving me the IV form of my home pain med, and realzing that that wasn't going to help, they bumped me up to IV form fentanyl, which is the strongest pain med there is. I'm still hurting, but not as bad.
I just got moved into a room and I am waiting for the DR to come and chat.
Hopefully tomorrow we can talk to my surgeon about taking out my feeding tube and putting in something called TPN, which is part IV and part feeding tube, but they use and vein and the bloodstream and the "food" is liquid. We want this because it will give my ENTIRE digestive system a chance to calm down and maybe heal itself.

Please continue to keep me in your prayers and for the Dr.'s and nurses for wisdom to treat me.

Home from the Hospital

I am home from a 4 day stay at the hospital due to pneoumnia. Last Wed. (12/24) I woke up not feeling well, but couldn't put my finger on what was wrong. Then, Christmas morning, I woke up and was in serious pain and was having trouble breathing. My mom took me to the ER, where I was immediatly taken to a room and started having tests run. I had a fever of 103, my heart was racing, and my oxygen stats were low. I was admitted, and got to come home this evening. The hospital that we went to is very small, and gradually people are starting to find out that it exsists. It only has 10 patient beds, and 7 or 8 labor and delivery beds. They don't admit high-risk patients, instead they transfer them to the big hospital downtown.
My mom and I were so pleased of the care that I got. The nurses were so nice and friendly.
The DR changed some of my meds and continued my anti-biotics. I'm not back to 100% yet, but I feel better than I did last week. Please pray that I will continue to get better and return to my normal activities.


I have a prayer request for baby Stellan. He was rushed to the hospital and has RSV, which can be deadly for infants. Please pray that he will get better and that the Dr.'s and nurses will know how to treat him.
I also have another friend whose daughter has pneoumnia and RSV, and they got home from the hospital yesterday, but she is on oxygen 24/7.

Tireless Tuesday

Well, for starters my grandfather is still in the hospital. This afternoon he had a drain tube put in to remove all the fluid and bile in his gallbladder. He is still in a lot of pain and spends his days sleeping. I have repeatdly told my mom that her and her siblings should make up a schedule so that everyone is not all there 24/7, but that hasn't helped. No one wants to miss anything, so they all stay up there. My mom, her 2 sisters, her brother, and her mom. One of my aunt's is at home sick. I have been up there once, but because I have little to no immune system I have stayed at home. We don't know when he will be coming home or what the long term plan is. We are just taking one day at a time.

I have started taking my tube feeds again, and starting to feel better. I have primarily stayed home these past few days, as the allergies are killing me and it has been a bit chilly and very windy lately, perfect weather for me to get sick in.

I haven't gotten my Christmas Picture done yet. The weather has not been good to take it outside, but hopefully tomorrow will be good. My dad is taking me and my dog Zena downtown to get them done. Then I have to write my Christmas letter and address and mail cards. Plus I have to get my pictures made at Target with a Christmas background. Hopefuly I can get all that done by the end of the week.
I cancelled my theraphy appt. today because I was just not feeling well this morning. I rescheduled for Thursday morning, and then Thursday afternoon I have a dentist appt.
I need to go back to the pain management Dr. this week because I am almost out of morphine, and I have to see the Dr. to get a refill.

My best friend will be in town this weekend, so hopefully we can find something to do together. We haven't spent much time together lately, and I miss her.

It's only 23 days till Christmas, and I have so much to do ( I still don't have my tree up), but I can't do everything in one day or I will wear myself out.

I am trying to remember not to commerilize Christmas this year, but remember the true reason for celebrating: Jesus' birth and Him coming to save the world. If you forget this this year, than Christmas will mean nothing to you.

Urgent Prayers Needed

My grandfather is very ill and was rushed to and admitted to the hospital this afternoon. It has been determined that he has a gallstone that is very large and is blocking his entire gallbladder. Because of his age (he's 87) and current bad health and his heart condition there are only 2 options: 1) drain the gallbladder, but leave the gallstone, which is only a temp. fix and will not relieve the pain he's in or 2) do surgery to remove the gallbladder and stone, which he will probably NOT survive the surgery. He's in alot of pain, and is on a morphine pump, it' s not working, but they isn't anything else they can give him because of his heart. The surgeon told him that he could tell that my grandfather is not one for drastic measures to be taken, and my grandfather said yes, that if something happens he wants no measures to be taken to try to save him.
All of the family has been called and everyone is meeting at the hospital tomorrow morning. On top of all this, my grandmother is very ill as well, and we have been trying to pursade her to go to the Dr. , but she refuses.
Please pray for my grandfather, my family, and for the Dr.'s and nurses that are taking care of him. Pray that God's will will be done and that if it's time for my grandfather to go to Heaven that God will prepare the family.
I will update tomorrow as I know more.

Feeding Tube and Starting Point

I am sick. I have a disease in which there is no cure. Sometimes I think that I may die from this. I have spent many weeks of this summer in the hospital, having test after test ran, all with no answers. Finally, my body gave out, and I had sugery to insert a feeding tube. It is from that I will be getting most of my nourishment for the next I don't know how long. My future looks bleak. No matter how many people pray, I am getting worse.
But, this much I am sure of. No matter how sick I get, I know that God is with me. As I look back at major events from the last 2-3 years, I see that everything was leading up to this moment, this time. Everything that happened has some part in this. It is a total God thing, and I wish that I had trusted Him more. What happens after this, I don't know.
I may die from this, but I know that God is using me and my illness to transform the lives of others.
John 9:3 says " so this has happened so that the works of God might be displayed in his life."
My prayer is that God is using me, to show others Him and His powers.

Pray for me please

I wanted to give a little background info about my problem and why and when it started. **************************************************************************************
I was born with a very rare condition called VATERS Syndrome. Each letter stands for a different part or system in my body that either doesn't function normally or has abnormalities. It is so rare that I have never met aanyone else with it, and it is not in the medical textbooks, so alot of doctors have never heard of it. My main problem is with my stomach and esopogaus. When I was born my stomach and esopogaus were not connected (part of the VATERS), I had surgery a few days after birth to connect them. The connection lasted until 5 years ago, so I had surgery to connect them once again. Well, some time after the second surgery, I started developing problems swallowing.At the time ( and still today) the only known treatment to cure all is a transplant surgery where the esopogaus is removed and the part of the colon is cut out and made into the new esopogaus. Well, my mom knew there had to be another option, so after doing some Dr. searching and meeting with some top Dr.'s in Texas, we were referred to a top Dr. in St. Louis. in January of 2006, we went to St. Louis, and met with the Dr., expecting the worse: nothing to be done, but surgery. Instead we got the best news possible: all I needed was botox. 4 shots of botox, at exact places in my esopogaus, and that's it. The botox could last anywhere between a few weeks to 5 years. I got 2 years out of it. But, this time around my espogaus has stopped working with much greater power and pain then the first time around. Very little is going down, and I am in much more pain than the first time around. I have already spent 6 days in the hospital on IV nutrition, and I know that there are many more hospital days to come. I am starting to have alot of second thoughts, and fears, and alot of emotions surrounding this, and the sub-layers of the scope of all this.
Please pray for strength, peace, and the pain to go away.
All for now,
Emily
6/4/08