Closer to a diagnosis

We met again with the pediatric endocrinologists about E's case and they have decided to start lowering her glucose levels to see if they can't control them at a low point to gather their "second critical sample" as they call it. They are almost certain she has hyperinsulinemia (this link takes you to the Children's Hospital of Philadelphia site where we were directed for a wealth of information) which is basically the opposite of diabetes (as we understand this and are clearly still learning and gathering tons of data). E's body over produces insulin that consumes the glucose/sugar cells thus making her blood sugar levels go critically low as we've seen. She's on a regular IV of glucose solution and the blood draws they're gathering (in the 50s, 60s and 70s - some 90s) aren't even that high. To give some context, if another baby were on this dose of glucose, their levels would be around 160 or 170.

Before making an official diagnosis, they do still want to gather that second critical sample but they are close to wanting to start trying out the leading drug (diazocide) used for this on E. Dosage will be trial and error in starting with this drug and the first course of treatment would be to try the two drugs typically used to treat this (either independently or together) and if they don't work surgery to remove part of the pancreas might be needed. That is a long way down the road, but at least we're getting some information we can wrap our heads around. One bit of information that gave me hope was that kids can outgrow this illness (be "cured" if you will) and there are rarely adults who have it.

There is so much for us to learn and the scary part is still obviously the unknown, but we're trying to take it one day at a time. We are so thankful this was caught very early and her sugars have been monitored every since that low time at the Women's Hospital. We are also incredibly thankful we are so close to a world renowned Children's hospital who has experts on staff who treat this very rare disease.

We have been spending much time in the NICU and I think I was in denial not wanting to take many pictures since I kept telling myself she would come home soon. Well, not only is the poor girl a second child and won't have many pictures in general but now that we know she'll be in the NICU awhile I need to take more picture to capture the beginning of her life as much as I don't want it to be in the NICU. Her neonatal nurse said it so well today in that E looks like a typical, healthy baby except she can't maintain her glucose levels which is why she's in the NICU. So here's some pictures today.






And of course we don't want to overlook the person who starred in this blog for so long Miss K.