Life can just be hard sometimes. And sometimes (many times) our expectations don't match reality. I expected to have a perfectly healthy little boy. I expected to be able to take him home in his new car seat within a couple days of his birth. I expected to let his big sisters smother him with hugs and kisses - help with burping, baths & binkis. My expectations certainly didn't include being in the NICU - let alone for 12 days now. But, of course, no one really expects that.
Link's doctor says he's "that kid" - you know - the one that keeps him up at night, researching... trying to figure out what the deal is. For a while, he was doing great with weaning off the glucose, but at 25% concentration, 6 ml/hr Dextrose (sugar water - glucose), Link has stalled. Every time they try to go below that level, his blood sugar readings drop. They want his blood sugar readings to be above 55, but they keep dipping into the 40's & 30's. They've tried upping the hydrocortisone. They've tried upping the food - they have his feeding tube at 25 ml/hour + as much breastfeeding & bottlefeeding as he'll take. And just yesterday they started a new medicine - Diazoxide. It is supposed to block the insulin. They started the dose at 5 - today they are maxing it out at 15. It will take till Friday to really see if this medicine is going to work. And we are all P R A Y I N G it will work. Because if it doesn't... (d e e p breath, cringe)...
they are setting things up for a transfer to the Children's Hospital of Philadelphia (CHOP). This Children's hospital is where all the research & experts on hyperinsulinism are located. From their website:
An additional cause of hypoglycemia in children includes a condition called hyperinsulinism. This may occur as a result of abnormal cell development of the special "beta" cells in the pancreas that secrete insulin or from a mass in the pancreas. Some children are also born with errors in their metabolism that can lead to hypoglycemia.
Today they are taking out his UVC (the IV through his belly button) and putting in a PICC line - and the people at CHOP recommended some labs that would help rule out some rare genetic disorders. One of the labs is a very specific genetic test where they are drawing blood from me, Jason & Link. That lab alone is $8,000 (did I mention how grateful I am for insurance?)
Jason & I are holding up pretty good. He is my rock & my anchor. What a wonderful daddy & spouse he is. He is watching the girls for today & tomorrow & then they'll come back down to St. George (they were here last weekend as well) so we can be a family for Thanksgiving.
Prayers on Link's behalf are very much appreciated. We have felt them. We know that we are loved & being watched over. I truly believe Link sees some very special angels watching over him that we cannot see. I will try to update this blog again when we know more. Thanks again for all the support & prayers.