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Sweet Grace Gourley went in for her Glenn today (the same surgery Jack had 2 weeks ago) and she's had some complications. She is such a fighter and came back from major complications with her first surgery, but please keep her in your prayers.
Jack had his 6 month check up today and got his vacinations and RSV shot. As a result he was clingy and whiny all afternoon, and since he got me up at 6:00 this morning I was tired and short tempered. As I tripped over his oxygen tubes and fought to get all his daily medications through his clamped lips I started feeling a bit sad and frustrated about Jack's condition, wishing he was just healthy and normal and we didn't have to go through all of this.
Then I read that Grace was struggling with her surgery. And I read about Owen and all he is going through just to prepare his body so he's even a candidate for a heart. In relative terms, Jack is the healthiest half-heart kid I've heard of. It puts it all in perspective and makes me feel bad for complaining. I still may cry to myself if they tell us Jack still needs oxygen after his appointment Wed, but I will not take his good health for granted.
(btw- Jack lost a little over a pound in the hospital, but according to the pediatrician's scale it looks like he's starting to gain it back and he's back to what he weighed at his last RSV shot 4 weeks ago. Dr. M said he looked great.)
Christmas letter 2023
4 months ago
2 comments:
I heard about Jackson's blog from Jess Hardy. She was in my husband and I's ward while her and Dan where in Provo. My niece, Brookelle, was born on Jan 21st and after the not breathing scare 3 days later...we found out that she has HLHS. So your blog has given us hope. She had her first surgery last Friday and is doing ok with ups and downs. We are praying that she recovers quickly and can come home. So thank you for all of the information you have posted. Danielle Christensen
It's okay to feel frustrating... it stinks that our little guys have to go through so much! There are many times during the day that I just want to throw that Oxygen tubing outside and never see it again!
The good news is... Jack is doing fantastic!! I know a few little guys with HLHS that are 3-5 yrs old and you would never know what they have gone through. They are perfectly normal little guys on asprin only. Jack is following in line with their stories and I pray that he continues to do so!
Owen has always had his little function and leaky issues and I always knew transplant would be in his near future. Call it Mother's instinct if you will. I am grateful that he is doing so well also. I am so happy that he's not in ICU waiting for a heart.. I get to have him home (for now). I'm grateful that they caught his antibody issue before he got really sick so they can take care of it and give him the chemo while he stronger.
I can't wait til these little guys are in older and we can look back on these rough times and smile.
Hugs,
Andrea
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