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.
Biopsy and Fun
2 days ago