I am sorry I never got a chance to update yesterday.  It was a long day from start to finish and there wasn't a moment to write.  Cooper's pain was awful yesterday.  We went from only needing 1 dose of dilaudid in 2 days to needing it every 2 hours all night and all day.  In the afternoon, our team finally took mercy on the poor kid and increased his dose.  He was miserable.  In the midst of all of that, he had the terrible headache back, ran a low grade fever all day, and was jonesin' for some pasta even though he was vomiting.  Thank you steroids - oh wait.  Did I mention the 'roid rage?  Fun times.  Because of the sudden increase in pain and the huge increase in output from his ostomy (more tha 1400cc in 24 hours up from 40cc  total for the entire previous 24 hours), the team ordered a CT scan of Cooper's belly last night.  That meant he needed a new peripheral IV because you can't run the contrast through a central line

Boy am I glad that today is over with!  We went down for scopes/biopsies at 7:30 this morning and I was on edge until nearly 6 when the doctors came back to give us the information they had so far.  We did get good news - his biopsies are improved.  The bad cells are only showing up in scattered areas of instead of throughout the entire tissue.  That is wonderful and it means that we are getting a handle on this rejection.  I was so nervous about these biopsies because, honestly, the tissue we can see and that the scope can see didn't look nearly as good as last week and so I was a mess all day wondering what that meant.  The doctors agree that the tissue doesn't look as healthy as it did, but hopefully that will improve with time.  The preliminary results came back on the antibody testing that was done as well.  All we have is the quantified lab tests; the slide stains and CD4 test should come back tomorrow.  The little bit we do have ba

Tomorrow is going to be a big day here at Children's UPMC.  First thing in the morning, Cooper will have a whole lot of labs drawn to check for antibodies in his blood.  He'll have biopsies of his small bowel and colon through his ileostomy and then a little later in the day, he'll have his new central line placed.  We need lots of prayers for good biopsy results that show improvement or resolution of the rejection, no more antibodies in the tissue, or the blood, and an easy to place bigger central line to make getting all of the meds Cooper needs easier.  I am sorry for not updating yesterday.  By the time I had a moment to do it, it was late and Cooper woke up in terrible pain during the night, so I never got to it.  We spent a lot of time on the phone with Kyle during the night trying to get Coop's pain back under control and figure out what was causing it.  X-rays and ultrasounds didn't tell us anything, so the cause of the pain crisis rem

Today has been one of those days where you get amazing news one minute and then get jolted back to earth with something not good the next.  I'll go in order so you can live it with me.  Cooper had a better night last night than he has had all week.  He slept for longer intervals and his pain was pretty well controlled.  He was on the happier side this morning and when Aunt Nancy came by after leaving work (she is a night charge nurse in the ER at a neighboring hospital), I ran over to the RMH to shower and grab some coffee.  The ICU docs rounded shortly after I made it back to his room and the big news of the morning was that Cooper was going to be able to go upstairs, as long as the transplant team agreed.  I didn't pack us up or anything, but I did get excited!  We waited all day for the transplant doctors to come.  They had some surgeries and such, so it wasn't a big deal.  Around 2, we heard that we were definitely going upstairs, so

We are trying to bring ourselves back to HOPE today.  Kevin and I are feeling very beat up and torn down right now, but we are trying.  We try so hard to never lose hope for our Cooper, but there are days when we fail miserably in that quest.  The past several days have been some of the hardest we have ever faced.  We have been questioning every decision we have made for Cooper and feeling so badly that we signed him up for this hell.  We know we had to give him this chance, but at what cost?  I had a good long talk with Dr. Soltys this morning and some hope seems to be trickling back in.  He said that while this is not good at all, he feels encouraged by how Cooper looks today.  We lost that section of colon, not to ischemia, but to rejection.  We'll get the pathology back on the "chunk of colon" today so we can see how the lab grades the rejection there.  Kyle (Dr.

Well, I guess there is some good news.  Cooper is extubated and doing well breathing-wise.  He is breathing really fast, but saturating well.  The fast breathing is all about the pain.  He hurts too much to take a deep breath, so he is breathing very fast and shallow.  But the tube is out and that is great.  He is in an enormous amount of pain.  The ICU doctors are doing great staying on top of the pain and we are still working on the best way to keep him as comfortable as possible.  To add insult to injury, Cooper is running a high fever tonight.  It is a bad side effect of the thymoglobulin.  He is miserable and there is nothing I can do to help him.  The biopsies from this morning show that his small bowel rejection is worsening.  The colon biopsy was not useable because the tissue was dead, but the doctors are calling it severe colon rejection with moderate small bowel rejection.  Kevin and I ar

This morning has already been a long and rough day.  Cooper had a bad night filled with pain and crying.  This morning when the transplant fellow came to see him, he took one look at his colostomy stoma and left the room quickly saying he was going to get Dr. Soltys.  The stoma was purple and his ostomy bag had a lot of blood in it.  Dr. Soltys came and suddenly there was a lot more activity.  He called down to get the traveling scope equipment to Cooper's bedside and they had the head of the GI department come and do the scoping himself.  Dr.

Before I go any further with this update, I need to say Happy Birthday to my dad Buddy.  I haven't gotten to speak with him today to tell him and I don't know if I will get to.  I love you Buddy!  Happy birthday!

Cooper was hurried to the PICU this morning after getting very sick very fast.  His blood pressures plummeted and his heart rate went way up.  The 7B nurses were amazing and all were in our room helping to stablize him.  The PICU docs came up and he was taken down.  With all of that going on, we got word that he is in rejection.  Dr.

Today has been an achey day.  Cooper's only been up once today to walk.  He woke up at about 1:30 in the morning with a headache that was making him scream and cry.  He had some medicine and wanted an ice pack and he finally fell asleep after about 30 minutes of tears.  I thought we were all clear, but we had started feeds again and he woke up at 5am vomiting.  So the feeds got turned off and we put his g tube to drain.  Within 2 minutes, he had drained out 350cc of stomach contents and he settled in to sleeping again.  At 6:30 we got woken up to get ready to go down for his Monday morning ileoscopy/biopsies.  We yawned and got ready to go.  Cooper was still complaining about his head at that point and he wasn't pleased with the whole biopsy idea.  He is wide awake during these things, but they don't hurt at all - they feel a little funny, but no pain.  He freaks out when anyone goes near his ostomies, though, so it is not fun.&