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Well, so much for wishful thinking that we might come off the oxygen. Instead we are now officially turned up to a 1/2 liter. We took every precaution this time to make sure he was happy and feeling good for his appointment, and he was. He slept the whole way there and then kicked and wiggled happily while the nurse checked him. Unfortunately his sats were at 72 on 1/4 liter and 70 on room air. Not good enough. I now have to take him to the pediatrician twice a week to check his oxygen levels. I think I might check with Dr. M and see if we can just get a pulse ox machine at home. That would be so much easier than dragging him to the dr all the time.
The cardiologist didn't seem overly worried since he hasn't gone down since last time, but he did warn us to keep an eye out in case he suddenly turns really blue which could mean a blockage in his shunt and we should call 911. That's always what you like to hear when you go to the doctor. He's hoping we won't need to do a cath before his next surgery to open things up, but we'll see. We are also scheduled for a sedated echo in 3 weeks to check on the function of his heart which means a 12 hour stay at the hospital, but hopefully we should be home by bed time. Dr. Manon also thought that since his sats are so low he most likely wil have his Glenn sooner rather than later, so probably in December. I was kind of hoping it would be after the holidays, but we'll do what we gotta do.
Our cardiology visits are always such a reality check for me. Jack is growing and learning and getting cuter every day so I sometimes forget that he's got major medical issues that are only going to get worse in the next little while before they get better. I just have to remind myself that all these heart babies have their own issues. Jack is a great eater and sailed through his first surgery so I guess if we have to pick a challenge we can deal with needing extra oxygen. I'm even working on not getting so frustrated when I trip over his tubes (which I do ALL the time) or have to continually fight the battle with his busy fingers to keep it attached to his head.
I'm so glad this weekend is LDS General Conference. I need a little inspiration to keep me going right now. I'm sure that will do just the trick.
Christmas letter 2023
4 months ago
7 comments:
AIMEE, I am so amazed at how well you are doing being a heart mom. You really help me out allot and we can get through this together. I am so glad that we have gotten to meet each other. Like you said before we will just deal with what comes with our heart baby, oxygen, throwing up, you know just figuring them out. Well I am glad Jackson is doing good, I am keeping you guys in my prayers and crossing my fingers no 911 calls.
Sorry he has to keep his oxygen, but like you said, it's better than some of the other complications he could have. I hope he doesn't give you any big scares and keeps helping you forget he's sick by growing and thriving and having busy fingers.
The new pictures are so sweet. I'll make sure Brienna sees them when she gets home from school. :)
Sorry that Jack is still needing his tubes. He must think he looks really hot with them on. After all it is the new fall fashion! And you know that now since he can smile he needs a little laughter and what is funnier than watching mom trip all over the place?
Keep up the good work, we love you guys!
CRUUUDDDDDD!!!! I am sorry, that is a real downer... But chin up, because if he has surgery in Dec, you might be out of O's by January that is just four short months away...We will keep praying he does well... Oh and this is a silly thing... So Gator hated the cars seat too... Bawled, like there was no tomorrow... So I figured out that he likes the windows cracked.. The white noise totally settled him down... Try it and let me know what Jack thinks....
Oh how we love oxygen!! We can completely relate. Bryson will be 2 years old in a week and has had oxygen all of his life with the exception of 3 shorts months. So You get used to it and so do they. Bryson will bring it to us to put on him if it comes off. Kinda cute.
Hang in there!
Jennylin
You are rock star parents! So impressed with you! Glad we got to see little Jack and hold him the other night! What a handsome little man! Oh, love the porn star boob story! I totally relate!
Hang in there, Aimee!!!!!
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