09 Mar Update
We’ve had a pretty quiet weekend, gearing up for a very busy week ahead. So far, Keegan has tolerated the Elecare formula well – no vomiting or increased diarrhea. In fact, he went 24 hours without a stool at all, which scared me to death. Lots of kids with GI problems vary between chronic diarrhea and chronic constipation. I don’t like Keegan’s diarrhea, but I really don’t want to start dealing with constipation. It also scared me because Keegan’s belly distention had gone away while he was off all of his feeds from Tuesday night until Friday night. It hurts me to see his tummy so big, and it was SO nice to see it normal again. His belly has swollen up just a bit with the Elecare feeds but nowhere near where it was last week when he was on his old Neocate formula. We had initially agreed to allow one trial of overnight feeds to see if he would tolerate them better on the new anti-vomiting medicine. The trial was supposed to be tonight, but Keegan is going to have an anesthetized procedure tomorrow (more info on that in a sec). That will require stopping his fomula g-tube feeds at midnight. It still should be enough to gauge the vomiting, as it continued before with as little as 45 minutes of feeds after he fell asleep.
The only other change we made this weekend was to start an oral form of the “big gun” antibiotic (vancomycin) he is getting for the central line infection. Now he gets the antibiotic in three forms – intravenously through his port for the line infection, an “antibiotic lock” of his line (a mix of vancomycin and heparin to lock his line when his infusion is done; this is in an attempt to kill the film of bacteria that has likely colonized on the plastic catheter of his port), and an oral form that goes through his g-tube. The oral form only works in his GI system, doesn’t make it to his blood stream. Evidently, the IV form only works in the bloodstream, not his GI tract. The theory behind giving him the oral form is that there could, on some remote planet, be an infection in his GI tract causing the diarrhea that (1) we haven’t seen from his prior scopes, (2) hasn’t caused any visible intestinal inflammation, and (3) hasn’t been caught by the 10 million stool and blood cultures we’ve drawn. It is extremely unlikely, but there are very, very few side effects to the oral form and might as well cover all our bases at this point. The only effect we’ve seen so far has been that he gets very quiet and lies down in his crib with his paci and puppy for about 20 minutes after each dose. Nothing terrible, just pretty unlike our fiery Keegan.
Now the plan for the week:
1. Monday – heart catheterization and biopsy. This is to absolutely rule out rejection or infection in the heart as a cause of the GI symptoms. If he gets a big thumbs up on the biopsy, we can discuss lowering his Prograf levels to perhaps help raise his white counts.
2. Mid-week – Surgery to remove infected port/central line, place temporary line for use until infection is officially clear, and repeat upper endoscopy and colonoscopy.
3. Sometime during the week – Immunology consult, GI motility consult (there is an entire group of docs here that just deal with motility problems – this could include a full neurological work up and more testing), discuss necessity of changing Keegan’s g-tube to a g-j tube. We’ll explain more about this if it happens, but basically we’d bypass his tummy and his feeds would go straight into his small bowel.
Lastly, the decision was made today to leave Keegan on the GI floor. The nurses and docs on the floor have had a conference with the cardiac transplant team and discussed how to deal with possible heart problems that may crop up. The agreement was made to leave him here unless the biopsy shows something important, and he will be moved immediately to cardiac should any questionable heart issues arise. That’s fine by us – we really like the attending on this week, and the GI doc we came to see is truly being the “quarterback” of Keegan’s care that we have been needing. I guess a co-quarterback because the transplant cardiologist here is just as involved.
That’s about all the news fit to print at this point. We were able to get a room at a place for out-of-town families run by the hospital called the Devon Nicole House. It’s kind of like a hostel with a small room for a bed and nightstand and shared bathrooms. It’s cheap though, and only one of us goes back at night since the other stays with Keegan. When Gray goes back home for work, we’ll lose our spot, but there are plenty of options like it around here. Today we actually had quite un-Boston like weather with sunny skies and highs in the upper 50s. We went out to the garden, even though nothing is blooming quite yet. It was nice to get some fresh air, and let us all stretch our legs, especially since the snow is supposed to return tomorrow.
Thank you so much to each and every one of you for your unwavering support and inspiring faith. We are so eternally grateful for the love you’ve shown our little family. Today was the celebration of the Transfiguration of Christ. The first reading was Abraham being asked to sacrifice his Isaac on the mountain. Abraham trusted the Lord so much that he was willing to follow through with the sacrifice of his only child if asked, and Isaac trusted his father so much that he was willing to lay down on the altar even knowing the consequences. The Transfiguration or appearance of the Risen Christ to the apostles revealed the promise that our trust in our Father is not misplaced. He offered Jesus, His Only Son, for us, and Jesus so trusted his Father that He was willing to suffer on the cross for us. We hope and pray that we can so fully trust in Him and His great love for us that we are willing to place Keegan, our only son, in His healing and comforting hands. Thank you for praying with us tonight.
Maddie
CONTACT INFO AT CHILDREN’S HOSPITAL OF BOSTON:
Keegan Harrison
Main Building, 9 South, Rm 9116
Children’s Hospital of Boston
300 Longwood Ave
Boston, MA 02115
Room Phone – 617-355-3950