Wednesday, November 28, 2012

Some answers & info

The past couple days have been busy. They moved Link from the NICU to the Encdocrinology floor. Then they moved all of us to another room on the 5th floor so Jason & I could sleep here with Link. We're still on the waiting list for the Ronald McDonald House.
They took out the PICC line in Link's left arm & put a new one into his left foot. That was a painful process & I hate to hear his screams. :-( The other difficult thing was that they tried to draw his blood when his blood sugar was low & they couldn't get enough & he was screaming & he ended up getting so upset that his blood sugars rose & they ended up not being able to get the sample anyway. Not fun. They also removed the PICC from his head, which is nice :) Right now he is on 30% Dextrose at 18.5 ml/hr. That's quite a lot of sugar. And now he's having some intestinal issues. Poor guy. He has been pretty good overall, though. Love this little dude.
Today was a bit better than yesterday. The biggest reason is that we got some answers on what's going on with our sweet boy. The genetic tests are back. They got Link's test & it showed one genetic mutation. It took another day before they got the results back from us - the parents. But we JUST heard that the results show that the gene came from Jason. Which is REALLY good. That means that there is a VERY high chance that Link has focal disease instead of diffuse, meaning that they should only have to take out a portion of his pancreas instead of the entire thing.

So - Link has officially been diagnosed with hyperinsulinism. If you want to know more about it, go HERE.  Jason & I watched this yesterday & it REALLY explained a lot & went through the whole process of what needs to happen. Right now, Link's PET scan is scheduled for Tuesday, December 4th & his surgery is scheduled for Friday, December 7th. I am so relieved that we are getting some answers & are looking at moving forward. Dr. Adzick will be doing the surgery & he is really THE MAN. He has done more than anyone & he has pioneered amazing surgical procedures (among which is a breakthrough in-utero Spina Bifida surgery that he was on Good Morning America to discuss).
Jason & I got to walk to the grocery store today. FREEZING! But so good to get outside finally & walk around & see all these beautiful old buildings. Also - Carrie Underwood stopped by CHOP today & it was fun to hear her answer the kids' questions :)
THANK YOU again for all the prayers & support! They have truly sustained us!


Chelsea said...

Yay for answers!!! That is good to hear. Sounds like things are progressing in the right direction. Hopefully you will be home soon.

jomama said...

Thanks for the updates. You are in our prayers. Sam said the prayer tonight and stopped in the middle of the prayer to ask, "What's Kezzy's babies' name again?" And then added Link to his prayer. Hang in there- we are all rooting (and praying!) for your darling baby boy! - Jodi and the Simmons Kids

Diane said...

We love you so much! We are so glad things are starting to come together. We pray for you and the 19th ward is fasting for your family this weekend. We love you so much!

Ryan and Shannan Hoffman said...

I am so glad that you are getting the answers that you need, and that things are not as bad as they could be. I hope things continue to go well and you guys can get a game plan on when you can be home!

Brookey said...

I have been thinking of your family often. So happy to have found your blog. Please let me know if there is anything I can do for you all. We are keeping you in our prayers!!!