SO Leo has Hyperinsulinaism. If you're looking for a NAME for it. Yesterday Dr. Anshoots, one of the neonatologists came and talk to me about what exactly we were doing with Leo. For all of you that want to know his stay at the hospital is indefinite. Somedays it looks sooner than other days and really it's a day by day thing. As of right now he's only going forward which is wonderful. He's stable and going forward.
So what we trying to do.
Everyone is born with a pancreas that secretes insulin to help us regulate our blood sugar. I bodies recognize that we need a certain amount of blood sugar ( glucose -- another name for blood sugar) to run our brains and bodies so our pancreas only secretes the amount of insulin it needs to help us keep that balance so we have plenty of glucose to run our brains and bodies and the pancreas creates enough insulin ( just the perfect amount) to kick out the excess glucose.
NOW what Leo's body is doing is it is kicking out as much insulin as it dang well pleases even if it doesn't need it so the insulin is eating all of his glucose up so he doesn't have enough to run his body. So he's on a glucose drip to match the amount of insulin he is making so that he has enough to run his body and fight off the insulin. So he started out at 20% glucose drip at 17 ml per hour and now he's to a 15% glucose drip at 6.2 ml a hour and our end goal is NO GLUCOSE DRIP!!! So as you can see we're coming along. BUT that doesn't mean we're coming home soon because along the way he's gone down in the glucose and in the same day had to go right back up. This is an extremely gradual process that's why the date is indefinite. He might get all the way down to a 2 ml/hr and not be able to shake it and not be able to wean down. So then you ask what do we do from there. He's also is on a medicine called diazoxide that in all the literature says it works but in all the clinicals that Dr. Anshoots has seen it didn't work. SO please pray that Leo can be that small percentage that the medication works on so we don't have to do anything more extreme.
Well this actually runs in Alex's family but we don't know if it's genetics causing it. SO they sent out tests on monday for gene testing and it takes a week to two weeks to get the results back. They also may have to route down to removing part if not all of the pancreas. WE DO NOT WANT THAT so that's why we are taking our sweet time figure him out and let his body figure itself out.
SO please pray that his body can figure this out.
SO we are here in Idaho indefinitely. And Leo is at EIRMC indefinitely. Please pray for him. Please pray for Layla that she can understand and that this is going to make her strong and not effect her badly.
Thanks for all of the support. We are so grateful and love you all so much.
2nd half of November
1 week ago