Maelyn's oxygen dictates my life right now. This past week we did not go anywhere or see anyone because I was checking her oxygen so much. I had been told that if her oxygen is below 75%, to call and take her in. This last week her oxygen was all over the place. So much that I just didn't know what to do. I was checking her oxygen 4 times a day and taking notes the range of numbers I was seeing and what she was doing at the time. I emailed her doctor to let him know what I had noticed and let him know that her oxygen had been anywhere between 69-82%. He decided to have me keep monitoring her and just see her at her Friday appointment. Thursday and Friday her oxygen was more steadily around 77%, so I was feeling better. Once we got in to see her doctor he was glad to see that her oxygen was back into the high 70's. He said he thought that he was going to have to admit her to the hospital to monitor her and formulate a plan for her but since her oxygen is still in the high 70's, sometimes 80, we were able to take her home and keep watching her oxygen here. But once her oxygen stays at or below 75%, she will be admitted, so I packed myself a small bag to keep in the car in case we don't get to come home from one of her appointments.
At this last appointment she had another echo. Nothing has changed, but as she gets bigger her blood flow needs should increase even though her blockage stays the same. So, the waiting game is seeing how her body adjusts as she grows, which is why her oxygen fluctuates. Her oxygen has to stay above 75% for at least 3 more weeks before we can say that she will not get the shunt surgery. Each week we go to her cardiologist, I get more and more scared that she is going to need the shunt surgery and dread it even more. Her doctor was explaining the shunt surgery a little more and said that sometime it makes them sicker and only works for a couple months just to get them to the Glenn surgery. But once she is 3 months old there are some other options to try to get her to the Glenn surgery at 4 months. Her doctor ordered some blood work this week to get an idea of where she is at and what he could try to get her to 4 month old without the shunt.
There is really no explanation as to why her oxygen is still in the high 70's. She is growing like crazy and the blockage has stayed the same. With each growth spurt her oxygen drops but some how comes back up. This day to day waiting game is getting harder.
I believe her oxygen is still ok simply because we are praying. Please continue to pray for her. Pray that she keeps growing so well but that her oxygen stays where it needs to be.
"You can ask for anything in my name, and I will do it, so that the Son can bring glory to the Father." John 14:13
No comments:
Post a Comment