we are grateful for wonderful medical teams and hospital staff, the many many prayers said on Mason's and our family's behalf, and another GOOD NEWS DAY which made it possible for Mason's discharge yesterday evening!
After 10 days in the hospital, Mason's KUB (belly x-ray) showed that the pneumatosis was finally cleared up and we are back HOME. We are hoping that this will alleviate a lot of Mason's tummy aches and reflux issues. And hopefully.......... he'll slowly want to put food in his mouth again!
The GI team thinks that possibly Mason has a milk allergy which along with his high steroid use triggered him to come down with pneumatosis. A month ago the transplant team switched Mason's formula (which I use when I'm too short on time to make my own blended foods formula) from Compleat, which has no dairy in it, to Nutren Jr, which is dairy based. They did this because Mason's basic chemistry blood tests were showing numbers of poor kidney function. So they changed his BP meds and his formula to one with a lower % of protein to see if his numbers would look better. So after the changes, his chemistry #'s looked better meaning normal kidney function, but.......Mason hadn't ever been on that much dairy before! On the Nutren Jr he was puking, gagging, and filling his diapers with runny poops. I stopped using it after about 5 days and just stuck with my own blended nondairy formula with now a lower protein %. Even though I stopped using the Nutren Jr, the pneumatosis may have already begun forming in his belly :(
Now Mason is to stay off dairy completely for several months if not longer. Following this plan will hopefully keep the pneumatosis from putting Mason in the hospital again.
Yesterday Mason was given only clear liquids by mouth and g-tube. Today I will start giving him his blended formula. I pray his belly will tolerate it. Tomorrow I will take him back to Primary's for a blood draw, KUB, and a check up w/ Dr. E. I'm also praying that everything looks fine tomorrow w/ no rebounding tummy bubbles.
The docs have a few opinions about what may have caused his seizure like event last week. But, I've got to go get kids up for school. I will add that topic in w/ my next post.
Until next time........