Friday, March 6, 2009

Update

Keegan had a very long day today. He slept pretty well overnight - just the usual diaper changes, vital checks, and venting his g-tube to ease his discomfort. He seems to be quite fond of the super-soft mattress in his crib here. We woke him up early because he was supposed to be taken down to the cardiac floor for a sedated echo around 9:30am. We didn't want him waking up at 8:30am just to be sedated an hour later. That was to no avail because as is the want of every hospital everywhere, we didn't get down to the echo lab until almost 10:30am. To answer your question, yes, he did have an echo Monday before leaving Dallas, but they wanted another one with their own people and machines as a baseline. No big deal. Keegan's heart function still looks good, and they still didn't see any evidence of his infection reaching his heart. He fell asleep with the sedation medication right away, and he slept right through the echo. Here, they allow the kids to sleep off the meds in their own time, whereas at home we have to wake him up as soon as the echo is over. He wasn't as much of a "mean drunk" when he woke up because of it. However, he scared the daylights out of us when his oxygen saturations plummeted after the echo was over. We tried an oxygen mask to no avail and ultimately had to put nasal cannula back on him at a pretty good rate to get his sats up. SCARY! That's the first time he'd needed oxygen since he was a month old. Seems he was just in a really deep sleep though, and he was absolutely fine when he woke up. And much happier than other times coming out of sedation.

Then, we went to have the gastric emptying scan we couldn't get in Dallas. To no one's suprise, the test showed that Keegan does not empty food out of his stomach at a normal rate. However, the medication we started him on a few weeks ago to help with the vomiting has also helped speed up his tummy's processing because it wasn't nearly as long as when he did the upper GI series the other week. The test was very helpful because it shows us that the vomiting medication is worth keeping but that we still have motility issues to work out.

We had a visit from hematology. The daily GCSF treatments finally worked their magic today to bring his white blood cell count and ANC up, so he'll get a break from the daily shots until Sunday. Interestingly enough, the hematologist here said that recent studies and even several cases here at this hospital have shown that Keegan's immunosuppressant, Prograf, actually CAUSES neutropenia (low numbers of baby white blood cells) in some patients. That was a true "duh!!!" moment today. She said that if we can ever switch Keegan off Prograf, his neutropenia should improve. However, the only other drugs available for Keegan haven't been researched enough to have them be his only immunosuppression. Maybe in a few years that research will come along, and his blood issues will be a thing of the past. This hematologist also thinks Keegan's anemia is due to his intestinal problems - solve that, and he may not need as many transfusions. We've thought that for a long time, just a little easier said than done.

Keegan's transplant cardiologist here wants Keegan to be on either the cardiac floor or the transplant floor, rather than the GI floor where we are now. So, another room change is probably going to happen over the weekend. They have assured us that things are different here and that this is actually a good thing. It means the GI doc we came here to see can actually follow us every day instead of the continuous cycle of GI docs here, and his transplant cardiologist is also VERY hands-on in treating non-cardiac problems in transplant patients. That just makes my heart jump for joy! She and our GI doc here have even worked together before to treat a little girl with very, very similar issues to Keegan. Ironically, that little girl was the last patient our transplant surgeon back at home, Dr. G, transplanted before she left Boston years ago! Small world, huh?

Our plan for the weekend is to start Keegan on a new formula that is often given to kids with short bowel syndrome, called elecare. No one is expecting miracles, but it is worth trying. We've agreed to let them feed him over night at least one night, just so they can see what happens. Next week will be equally as busy, and since this post is already extremely long, I'll explain more of "the plan" tomorrow. In the meantime, check out the pictures and video we posted of Keegan's trip to Boston! Have a great weekend, and we'll update again tomorrow. THANK YOU, THANK YOU for your prayers ... I can just feel them working!