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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, December 30, 2014

Through the window

I know there are many who are praying for us and wondering what exactly is going on. At first I was still processing everything and writing it out was pretty tough business. So understand this post might be a bit choppy as I try to explain. Last week we had a bit of a rough week, Gator was feeling nauseous almost every day and his numbers were off some. Christmas Eve was a little tricky because his PICC line wouldn't draw back. We have been trying to get his antiquags to be therapeutic and they have been up and down.. We worked it out thanks to amazing nurses who do a fantastic job. Christmas morning was amazing due to sweet Santas who took amazing care of us. I will be forever grateful for their generousity. The kids were so excited. When we got ready to go to brunch Gator got very sick... Eeeeeewww.. It was a very rapid decline after that. Yesterday at clinic we explained how he was feeling. The news of how bad the situation is was rough. We are trying a few things that aren't guaranteed to give us more time. Time is precious because we are running out. 
Our other option was to bring him home. He would be so uncomfortable as he retained more and more fluid until he wasn't able to breathe any more. 
We are kind of limited on diuretics because his kidneys and liver aren't happy right now either. 
Grasping.... Trying anything... 
It's hard to see your babies worry about their brother and he be in pain and we are helpless to ease it all. 
We decided to admit and try another big heart med, dobutamine. This has officially earned him a room at his second home at PCH. He could stay in the ICU or we could move to the recovery floor if he becomes stable enough. 
We also got approved by our insurance to send his PRA's to Stanford. More brains working on his antibodies. 
Yesterday once he started the dobutamine within fifteen minutes he was feeling better. Today we tried to lower it down a little. He isn't doing great on the lower dose so we are hoping to go back up tomorrow. His spirits are good. We are thankful for each and every prayer, message, text, email. Sorry if we don't respond right away. Know that we love you! 

6 comments:

likeschocolate said...

Bryn, My prayers are with you and your family. My heart is breaking and pray a heart is made available soon. He is such a sweet and special boy! Hugs from Atlanta. Love and Hugs, Kelleyn, Roman, and family.

Melissa said...

Oh, Brynn! We have been praying and praying for you! I hope you know how brave, trusting, and AMAZING you and Jeff are! I know you will be blessed with help and comfort!

Anonymous said...

I'm so sorry Brynn. I wish I could fix this for you. You are in my thoughts. <3 Jessica Brimley

Heidi said...

Thinking of you all.

marc homer said...

Brynn, The Rexburg Homers have been praying daily for your family. May God bless you with His spirit during this difficult times. We love and miss seeing all of you. Marc, Kathleen and the gang.

Jeff & Steph said...

I am so sorry for this tough experience. You probably don't remember me, my name is Stephanie Baldridge, I am also a heart mom, I emailed you months ago before my little Jack was born with HLHS. I was going to call and talk to you but I never did because we knew what the right decision was for us, and I wish I had called just so we could be friends. I will keep your sweet boy and family in our prayers, I am sorry you are going through something so hard. He is such a cute kid and every day must be a piece of Heaven; I know it was for us. All our fingers are crossed for a miracle for your family!