Tuesday, September 30, 2008

September 30th day +146

1st picture- Me and brothers playing
2nd picture- me holding a cute nurse's baby it was so fun
3rd picture- me being silly with the remote on my head
Sorry it's been a little bit. The doc's say I am back to where I was before I got sick a few weeks ago so they feel the drug is working. Thursday is the last dose for the drug but because they see a little results they will ask the company for 4 more weeks of drugs. They are slowley cutting me off my steroid once a week, they want to get me to 1 kilo. So far so good. I am feeling really good. I am not pooping blood anymore it's back to my regular color, I am pooping way less so I am so happy for that. They are clamping my nose tube to see if my tummy can handle it. We are starting it off slow and hopefully soon I will get it out, the snot up there is killing me. Today they surprised me and took out my pic line I was very nervous but it was ok. I am glad that they took it out. I am so excited to be feeling a little better my goal is to out by Halloween. Me and mom have gone out into the garden a few times and read Harry Potter. That's about all that's new hope everyone has a great day.
Love Trent

Sunday, September 21, 2008

September 21st day +137

Well the weekend has been kinda hard. I have thrown up and not felt good. Last night my heart was racing like crazy this morning they did an ekg and chest x-ray to make sure all was well. Nothing weird showed up so we will hope it will go away. I am starting to run a fever which stinks. Hope tommorrow will be a better day. Have a good week.

Love Trent

Wednesday, September 17, 2008

September 17th day +133

They have started the new drug, I have had it twice, with six more to go over 3 more weeks. It's actually cells that have been broken down and will help heal my gut. It's awesome what they can do these days, there is a name but I can't remember it. The doctor's are so excited for results. I am excited to. They put a tube down my nose that goes into my stomach. It's sucking out all the backed up poop and other fun stuff in it. I am not in to much pain so that I am thankful. They have also cut my morphin back so I can actually stand on my own and not feel like I will fall. I am very sleepy the last few days but hopefully it means my stomach is healing!!! Hope everyone is doing well. Talk to you later.

Love Trent

Wednesday, September 10, 2008

September 10th day +126

Campath did not work so Mom and Dad met with the doc's yesterday and here is what they said:
First of all a few days ago I asked Trent if he wanted to keep trying or if he was done, he looked at me and said "I want to keep trying, I do not want to give up". So because of this we have decided to try a new study drug. It is not FDA approved but shows promising results. Of course there is risk's involved but anything we try has risk's. His body will first heal from the infection this last weekend and then we will start this drug. Trent is a very sick boy, the doctor's were very worried this last weekend when his body fell apart. We are very thankful and blessed to have him with us and also thankful to nurses and doctors who love and care for Trent. Please continue to keep him in your prayers, have a good one.

Love Trent & Tiff

Tuesday, September 9, 2008

September 9th day +125

My potty throne has arrived. I am so excited. We just have to figure out a way to keep the buckets under it to catch my pee & poop. The chair will allow me to put my legs and feet up so hopefully they will not be so swollen. I have only pooped a few times in the last 2 days and it has been blood. The doc's think that my intestines are not working and everything is backing up or I am throwing it up. Nasty I know but it's my life! My fever broke and I am just trying to recover now. I am so excited for my potty chair.
Love Trent

Saturday, September 6, 2008

September 6th day +122

This week the doc's have taken me off 2 of my antibiotics and put me on some oral meds that were IV meds. They say they want to make things easier for me. Last night was ugly. I started to throw up and poop, there was blood in it so they think my body did not absorb the drugs orally. I am weaker than I have been and I feel horrible. Today they put me back on the antibiotics and took me off the oral drugs and put them back to IV meds. At least they tried my body just is not ready. I have slept all day it's crazy how fast things can turn bad. I hope tommorrow is a better day. The cdiff viruis came back negative but they cannot say yet if the campath worked or not. Hope everyone has a good day.

Love Trent