15 Oct Update
Keegan’s hanging in there right now, but he still feels pretty cruddy. He was admitted yesterday at Children’s around 3pm and started IV fluids almost immediately. He has been on complete “gut rest”, meaning nothing by mouth, not even water. He slept fitfully last night, lots of tummy cramps and probably pretty hungry. He’s so exhausted that he hasn’t been doing much. Surprisingly, we’re down to thinking this may actually be a milk allergy (different from lactose intolerance) that was masked by his immunosuppression and steriods. We’ve elimanted the biggest problems, like cancer, mega-viruses, and anatomical issues. So, we’re down to “normal baby stuff.” Yesterday, he had an upper GI series of x-rays with barium and a GI sonogram. Those were normal, as are his biopsies from last week. He was so dehydrated yesterday though that Gray and I were worried about his kidneys giving out again. He was having constant diarrhea and began dry-heaving Monday night. He couldn’t keep anything down at all. He has lost an entire pound since we were here last month and now weighs 16.3lbs. With all that, the transplant team was worried that his levels were going to be crazy, so everyone agreed Keegan would be safest at the hospital.
About 30 minutes ago, the doctors approved giving him some Pedialyte. It took awhile to convince him to take it, but he finally drank almost 7 ounces! If he tolerates it well for two feedings, then we are going to let him try some very elemental formula. We’re hoping to maybe go home by Friday. While we’re here, we’ll go ahead and do his monthly EKG to prevent having to come back just for that next week. Unfortunately, there’s no surefire way to determine if it’s truly a milk allergy. We’ll have to give him some time to heal, and then start reintroducing milk products one at a time. If it truly is a milk allergy, it is possible he could “grow out of it”. He’ll likely stay on a liquid diet until he gains some weight back, which will also be beneficial considering he has the pancreatic rest (liquid can get around that easier than solids, and it will get smaller as he gets bigger). Once he’s doing better, he’ll probably have to do some feeding therapy to re-teach him how to eat solid foods.
Please keep Keegan in your prayers for now. We would really like to go home Friday, but we want Keegan to be well enough to go home, whenever that may be. We ask for prayers that he tolerates the Pedialyte and new formula and that he can get some good rest this week. Thank you for all of your thoughts, calls, texts, and emails. We’re so blessed to have friends and family that care as much as y’all do for Keegan and our family. We’re doing ok, but we’ll be better when our smiling, happy Keegan is back for good.