07 Apr Update
Sorry for the delay in posting. I hope y’all know by now that we would have updated had we had any real news. Now we do…the good and the not-so-good. Here goes…
GOOD NEWS: Keegan has been off the anti-vomiting medication since Thursday and has been tolerating his feeds wonderfully! No vomiting, no increase in the residuals in his tube, and no increase in his diarrhea. YEAH! He’s taking off with the sippy cup of water, and we’ve even been allowed to let him “sample” a few things. So far, he’s not been too keen on eating, but he enjoys chewing/spitting out and of course, smushing in his fingers. I’ll put in this category that he has not lost any more weight. However, he hasn’t gained any weight either. This morning at clinic, he weighed exactly the same as last week. We’re going to try going up to 28kcal formula tomorrow, so please pray that he handles the additional calories well. If we can get him to start gaining just a little on a consistent basis, we can reduce the hours on his feeds (right now they run 22 hours a day). We’d love to see him able to walk around without that heavy pump backpack more often.
NOT-SO-GOOD NEWS: Keegan’s liver function is getting worse. His liver is slightly enlarged, but not any more so than it was at the end of last week. As we said before, the type of liver problems Keegan has (hepatic liver disease or hepatitis; this is a different type of liver problem than when the skin turns yellow, a cholestasis) are usually caused by either alcohol abuse, drug reaction, or infection. Obviously he’s not an alcoholic, and we stopped his remaining drug that may have affected his liver (the anti-vomiting med). So, we’re left to looking for an infection or the remaining rarer causes. Honestly, we thought the rarer causes were being looked for after the last liver biopsy, but if you remember, that didn’t happen after waiting an entire week inpatient for the results.
We have scheduled Keegan for another liver biopsy to be performed here in Boston next Tuesday. It will be done in the Interventional Radiology area, not the standard OR. This time, they will stick a big needle in through the skin while guided by an ultrasound. He will not be cut open again this time, although it will be done under general anesthesia. We are anticipating being admitted overnight after the procedure for observation only. He will have an echo done on Thursday of this week to clear his heart for anesthesia. Then, Monday we will go for the remaining pre-op labs and procedures. If his liver numbers spontaneously improve, we can always cancel. This time, our fabulous GI doc here is conferencing with pathology ahead of time to see exactly what tests will need to be run, prepare for electron microscope evaluation ahead of time, etc. We should have preliminary results by next Wednesday, with a full report finished within a week or so. The nice thing is that the docs should be able to replace Keegan’s g-tube with his “button” while he’s under anesthesia. His tube’s gotten so stretched out!
OTHER: Keegan has what is very likely just a little sore on the corner of his mouth, but we cultured it this morning to be sure. We’ll let you know if it pans out to be anything.
It is still possible that we could be home by the end of next week, but it is also entirely possible that we won’t. We have decided as a family that this is something we would like to evaluate here in Boston for now. Keegan’s liver problems need to be addressed quickly, and we feel that this is the best place to do that at this time. We would be loathe to return to Dallas and end up right back inpatient because we let it slide.
Needless to say, this was a very difficult decision, as we are more than ready to be home. We miss all three of us being together as a family, being able to see our family, friends, and neighbors, our house, our Rusty, Mexican food….had to throw that in there somewhere. I wish I could share something deeper than that today, but I’m pretty much incapable of intelligence other than talk of livers, bloodwork, and OR times. We are much more grateful than you know for your continued prayers for Keegan and our entire family. I feel as if it has become so expected to hear problems with Keegan’s health, and we appreciate you continuing to support us through this. Thank you so very much.
We posted a few new pictures of recent Boston adventures we’ve had with Mamie over the weekend. Enjoy!