We saw both the pediatrician and the cardiologist today. The pediatrician agreed to let us take home oxygen since we see a difference in his alertness, feeding, skin color, strength and general health. Plus, it will put us at ease. He doesn't need much. He is currently on 1/16th liter. He even did great on 1/32nd The cardiologist agreed that was fine. They both said that they weren't sure how much oxygen was helping versus just having the air flow. From our point, whatever works is great. We would go home today but because it is Memorial Day, we probably can't get the oxygen until tomorrow.
For those who know about the heart, the upper hole is a PFO which will probably be stitched up at the same time the VSD is fixed. The surgery is likely not to happen until 3-6 months unless he gets worse but everything looks as positive as it can with two holes in his heart. The cardiologist confirmed what someone else told me, it will be open heart. Not what I wanted to hear - it sounds really scary. But my faith in God will get me through the next few months - I just have to remind myself that He has a plan although I have no idea what it is.
As someone told me to, I am taking it one day, one step and one doctor's appointment at a time. Looking forward to going home, and staying home, tomorrow.
You might not know, but Brian and Jen Shuck's youngest, Aren, had a craniosynostosis surgery when he was just months old. That's open *head* surgery! Jen has a great story about her "night before." You might want to connect with her.
ReplyDeleteSo glad to hear you are getting to take Russell home and that the oxygen makes a difference. So much better than thinking about him having a hard time breathing!
ReplyDeleteSo thankful they can give him the surgery to repair the holes in his heart, though I know it is so scary to even think about!
Love you and praying for all of you!
Aunt Donna