Monday, November 19, 2012

Update on Link

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. 

10 comments:

Tiff Meister said...

Thank you for the update Heidi! I wish I could be there to help in whatever way you need. We love you and are praying for you all. Tiff

The Ballou's said...

We are praying for Link, you, Jason & the girls. We love you guys.

Patricia Potts said...

Although it's my birthday I just keep comeing across puddles of tears when I think of my little grandson. I love you. I miss you. I'm praying for you.

Lena Baron said...

WOW!I am still amazed at how quickly life and "our plans" can be changed. It is mind boggling. I am so sorry your little Link is suffering. Which causes you suffering. But I know that you are taking each moment as a life lesson and believe it or not, that becomes one of the greatest blessings of our lives here on earth. I am praying for a quick recovery and a solution for Link's condition. I am very irritated that I can't come and spend a meal or two with you. But I just can't take the risk of sharing any germs. So just know that if I/we were healthy I would be with you often. But instead, just know that you are often in my thoughts and prayers. And yes, please keep us posted. My heart aches and cheers for you! ((HUGS!!))

Lisa-Lou-Who said...

We are thinking of you guys and praying for your family. Isn't it amazing how we take so many things for granted? Most of the times it all seems to work out for us but then when it doesn't, it really tests and tries us in ways we never imagined. Stay strong and please call on us if you need anything.

Mindy Benson said...

Thanks for the update. Not sure why things happen the way they do either. We continue to pray and hope that this new med will work wonders! Things might be changing for our family soon too.

Megan Parr said...

OH my Heidi! I have been so disconnected from everyone lately dealing with my own stuff. I am so glad Lisa sent me this link to your blog!! Congratulations on your handsome baby boy! And my heart and prayers go out to you and your family as you are waiting on the Lord's time for your little guy. We will be thinking and praying for you all. Please call me if you need anything.

Cindy Lou Who said...

Love you, praying for you!!!
I wish I could take it all away! We love you so much!

2pint said...

Oh Heidi!!! We love you guys and are praying for you and your sweet baby boy. Just know we are thinking about you!---Johanna Stewart

Anna said...

Heidi - I'm so sorry you have to go through this. My heart aches for you. Link is so blessed to be part of your family. I will continue to pray for him and you!