28 days to go till I hit day 100 I am so excited!!! I love being home it's so fun. On Friday I had a clinic appointment. They are going to start taking me off the steroid a little at a time it will take anywhere from 2-3 months to get off it. If at anytime my gvh starts acting up they stop taking me off it and try to stabalize it. Then after a week or so they start again. So hopefully all will go well!! The Dr's are very encouraged with how I am doing so I am happy. I had to go get a chest x-ray, they are hoping to catch any infections or problems with weekly chest x-rays. I also was able to get off my tpn, I am so happy about that I hated it so I only have to have a liter of fluids at night. Other than that I am having fun playing with my brothers and peanut!! I am so sad to hear about President Hinckley but I am so excited to think about his reunion with his wife!! I bet he is loving it. Hope all is well with everyone.
Tuesday, January 22, 2008
Well being home brings some fun and awkward times. As everyone knows I currently have a nose tube. It goes in my nose and down into my stomach. It sticks out of my nose about a foot and there is about another foot inside. This morning I ate and then got sick. While throwing up my nose tube came out my mouth. There I was leaning over the barf bucket with the tube going in my nose and then out my mouth. I asked mom to pull the tube out and she couldn't because one end had snot and the other had barf. So I grabbed the tube myself and pulled it out of my nose. I can breathe must easier now because there was a lot of snot stuck to the tube. No more nose tube. Mom thought it was sick. Love, Trent.
Monday, January 21, 2008
Well today I came home. We were able to come home in the afternoon so we missed all the fun snow traffic!!! I am doing good my knees and feet are killing me. It's because I am not used to moving them so much and I have been crazy at home!!! The Dr's wanted to take the feeding tube out of my nose but mom was able to hold them off till Friday. So the goal this week is to take all my meds my mouth. I am now taking 13 1/2 pills in the morning, 8 1/2 pills at night with a IV antifungal. So the grand total of pills a day is 22 yikes!! No one in my family can complain about taking pills I laugh at them. I am going to stay very healthy so I do not have to go back to the hospital. Have a good day.
Sunday, January 20, 2008
Well we hope today was my last primary lesson in the hospital. This is Sister Amundsen and she has been giving my lessons for the past six months. Some of the weeks I did not really want a lesson and only wanted to sleep but she did not give up and afterwards I was happy that I had a lesson. I'm getting excited about leaving tomorrow but was not too happy to find out that the doctors want me taking all of my meds by mouth. I will do it so I can go home though. We have been taking short walks to stretch out my muscles because they have not been working much this stay. Thanks for the support. Love, Trent.
Saturday, January 19, 2008
Sorry for not posting sooner. Mom got chewed out today for not updating this. Well the news is that Monday is the projected day to finally go home. They have switched some of my meds. back to oral which I'm not thrilled about. Today they took me off of some of the antibiotics to see if my fever comes back. As long as I'm taking my pills and no fever I can go home Monday. Thank you. Love, Trent.
Tuesday, January 15, 2008
Well the tests have come back and nothing was jumping out at them. There were enough small signs though to show that I do have some graft v. host disease going on. They believe that I came in with an infection and it then moved to graft v. host. Tonight they started me on steroids(prednisone). The steroids will control the graft v. host but it brings with it a "whole host" of complications and side effects. I will probably be on steroids for at least a couple of months. The good news is hopefully I will start feeling better so we can leave. I've been here 15 out of the last 17 days and am ready to go home. Thanks for the support and prayers. Love, Trent.
Monday, January 14, 2008
Today I woke up throwing up twice. It was very nasty. I have not fevered so that is good I hope I can keep it that way. Today I went in for my scope. As far as the dr. who did it could tell I have Gastritis in my stomach. He said that it also could be a mild form of graft vs. host but we have to wait for the biopsy to confirm that. My bone marrow Dr. has not come in to talk to me yet so we will hopefully find more out tommorrow. I even got a few cool pictures of my stomach, esophagus and intestines. I am feeling a little better today I was able to eat PB M&M's and a nerds licorice rope yum. I haven't eaten for weeks and mom laughs that all I want it junk!! I was even kicking mom out of the room to go on a walk. It didn't last long cause my muscles aren't used to working but a little at a time they tell me. Thanks so much for the prayers and support. Sorry mom pushed a button on the computer so it changed fonts. And of course at the end it changes back.
Friday, January 11, 2008
2nd picture- My nose tube
3rd picture- My totally awesome hair
Today has been exhausting. I started a fever at 12:00 a.m. At 8:00 this morning it was still running high so the Dr. scheduled a ct scan. I had to drinik 1 liter of contrast (purple drink) it was a lot but the other choice was to have a feeding tube put down my nose to take the drink and my pills. Well I was so determined to not get a feeding tube I drank 3 1 oz cups in no time. I still had to drink 18 more 1 oz cups. Well I have not drank very much in the last 2 months so I could not finish them it was to much, Mom said she was very proud of me I tried my best. So they ended up putting the tube down my nose. I was very still and they got it in. When they gave me the purple drink I would throw it up so in the end I ended up with only a little contrast in my stomach. They were able to get all they needed with the ct scan. When I was getting the ct scan they put 100% concentrated contrast in, well they blew my line and and I had a big hole in it. The tech hurried over and of course I started to bleed so while he held my line so I would not bleed. Irish the nurse put a clamp on the line and we were able to get me in my room to repair the line. Ct scan came back and they saw no infections, but I still have a fever and they have no idea what is going on. So we wait again! My hair is coming back it is very fuzzy, Mom and Dad love to touch and rub it. I am so excited for my hair to come back in!! It's been a very crazy day but I'm glad the ct came back good.
Thursday, January 10, 2008
Things are pretty much the same. I sleep about 18 hours a day. I have no energy to get out of bed or do anything I am so tired! Mom and Dad are worried cause I have never been like this, but the dr's keep telling us this is normal. I am sick of the hospital and want to go home!!!!! Today Dr. Pulsipher came in and told us that my Cyclosporine level was to high (that is the drug to help with gvh) and that hopefully we will see me up and moving a little more tommorrow but they are still not sure I have graft vs. host. If by Monday I am not improving they will scope me to see what they can find. I still am not taking my meds, today mom and the nurse held me down and squirted the meds in my mouth. I was not very happy but mom found that this tactic is working the best!! Please continue to pray for me, I hope to be out soon and teasing my brothers.
Sunday, January 6, 2008
Well today I'm halfway through the critical first 100 days. I slept unitl 1:oo PM today and would have kept sleeping but dad was waking me up and the Primary came in to give me my lesson. I'm feeling a little bit better and my fever has not come back. They now think that two things were taking place at the same time. First I had some sort of infection that the new antibiotic is taking out and my anti-rejection medicine levels were too low. This caused me to have stomach problems which made it so I did not want to take my meds. which aggravated the situation even more. Once the fever stays away, my levels rise, and I'm taking my meds on time without a problem I can go home. Thanks. Love, Trent.
Saturday, January 5, 2008
I slept until 1:00 pm this afternoon. They took me off an antibiotic because I was reacting to it. I itched like crazy it was unbearable!!! So today they are trying me on a different antibiotic to see if it will get my fever down. If my fever does not go down in 24 hrs they will start the ct scans to find the infection. About 2:00 I had my temp taken and I did not have a fever, and the fever has stayed away all night so we are hoping that the infection or whatever is was is being taken care of!!! I actually got out of bed and played and talked to mom and dad, they were so excited!! Other than that everything is the same! Talk to you later.
Friday, January 4, 2008
Well I still have my fever and spend most of the day sleeping. They cannot figure out what the issue is but they keep trying. They have added another antibiotic. I have to go two days without a fever before I can go home and that cannot happen until they figure out what is wrong. Thanks for everything. Love, Trent.
Wednesday, January 2, 2008
Well today my fever came back with a vengeance and we ended up back in the hospital. Nothing has grown in the blood cultures so the doctors do not know what the issue is. All I did today was sleep and my temperature was higher than it was last week. Thanks for the prayers. Love, Trent.