Last night, I was filling out some paperwork on Jaime for social security. I needed some medical information on him. Liz, Jaime's nurse, got me his list of diagnoses, I just thought I'd take a minute to share ALL of them with you....
1) Right CDH
2) Hemophilia A
3) Sepsis-Staph Aureus
4) Epidermolysis bullosa-possible
5) Pulmonary Hypertension
6) Tracheomalacia
7) Right Lung Hypoplasia
8) Chronic Lung Disease
9) Ge Reflux
10) Poor weight gain
11) Osteopenia
His medications include: NaCl, KCL, Prevacid, Poly-Vi-Sol, Sildenafil, Aldactone, Diuril, and Advate. (Just a few, huh?)
Just wanted to share that info with you because it just goes to show how CDH effects his life as a whole. It doesn't end at the repair, it creates life long issues! Poor guy, but we feel the trouble is totally worth it! :-)
I'll post pics later if I get a chance...I'm off to do some homework!
Good Night....
I know I thought at first - okay surgery will fix this and then all will be okay? Nope. For a few it does. For many it isn't. But don't think this will be a lifetime issue that can not stablize - most loose their accessories and meds as they get older!
ReplyDeleteKeeping you all in my thoughts, prayers and sending Sir Jaime Lung Function Chants!
Elizabeth
PS Do Jared and Jaime know their Mommy is an activist ;-)?
May I come & visit tomorrow? ;)!
ReplyDeleteJaime will be fine, he is a strong little boy!
We love you guys!
Jeanie & Ryan
LOVE your message to us! So thrilled that you are HOME!!! Honestly though, maybe a little sad that we won't get to meet you in person when we are in Cincy in 1 month : ( We'll have to figure something out at some point. I'd really like to meet you and your three boys. I certainly can relate to all the meds. I think Emily came home on 10, plus continuous feeds, oxygen, and pulse oximeter. But like Elizabeth said, the conditions and meds aren't forever. He will wean off of some, possible gain others, but it will get better. That's what I keep telling myself some days!
ReplyDeleteCongratulations on graduating from the RCNIC!
((HUGS))
I thought your going home was a secret! When I texted you today, I was being silly! You would only let us know when you were in the car going home!
ReplyDeleteI am over the moon for all of you!
You are all where you belong, HOME!
God bless you all!
We loved the time we spent with all of you! Can't wait to see Jaime & Jared again
Lots of love & prayers!
Jeanie & Ryan
I am glad that you are HOME! Long time coming. It was great spending time with you and your family. I do hope when you come back that you do come for dinner. The Jared offer still stands for clinics and such.
ReplyDeleteGood Luck and take care of yourselves.
We love you and miss you all and are glad that you touched our lives.
Bev
Alright between the comments and Carter A's post I am assuming you are FINALLY where you all belong!!! YAY!!!! :-) So glad to hear this.
ReplyDeleteAshley
I'm so glad you are home but I miss my boyfriend's smiling face. I hope you are following my advice...."baby, baby, are you ok?" and don't shake the baby:) Enjoy being home, and I will see you in a few weeks. Tell Jared hi and give Jaime a kiss:)
ReplyDeletexoxo
Jaime:)
We had a chance to meet little Jamie and hug Jared ("the BIG brother") this morning. WHAT THRILL. So very glad you are all home. Our love, Dale and Majken XX00XX P.S. Jamie looks like Tom - but his eye are Sheryl's all the way.
ReplyDelete