Jon here. The past day has been showing us what the new normal is. Finley had a bumpy Tues. night/Weds. morning, a calm mid-morning, a great afternoon and a bumpy Weds. night. She is still on the high-frequency ventilator and will likely be for the next several days. Her oxygen levels are still good but have fluctuated somewhat based on her condition at the different times.
The nurses flipped her on to her stomach yesterday and she tolerated that for a few hours. After a sudden decline, they then put her back on her back but rotated 180 degrees from her previous position in order to allow her neck muscles to loosen and move. One of the nurses said it is not uncommon for babies on the high-freq. ventilators to have some neck issues as they do not allow movement and in turn the muscles do not develop properly.
Her lungs appear to have some fluid left in them and it continues to break up and requires suction to be removed. It is a necessary cycle in that they want the fluid and mucous removed but it can clog the tubes while being removed. They don’t know if this is what caused the decline, or if she was just done being on her stomach.
Liz taking over now…. So that was last night between 7-8. She recovered and had a good night until about 3:00AM when she had another de-sat. They decided that she is getting too puffy and has too much fluid accumulating between the cells, which could also be contributing to some of her more recent issues so they gave her a diuretic (Lasix) to help her pee off more fluid and also decreased her fluid intake somewhat. We have gone back a vent setting and her oxygen needs have fluctuated between 28-35%. Today is going to be a day of recovery. They aren’t really going to mess with the ventilator at all and just want to keep her calm and stable. It does appear that the air is out of her bowls (for now) and they “think” they heard more right lung in the back. That isn’t going to change things drastically, but it would be really good for her to have more lung hiding. If all she has is the right bud, it will continue to grow until she is about 8 or so.
I had a rough morning emotionally. To say this is hard is an understatement. Nothing can prepare you for your child to have a life-threatening condition and what it is like to have to just wait around and watch. It’s hard not to let the numbers rule your state of mind. The nurses always say, “watch your baby not the monitor.” The monitor can make you crazy. I talked to a few people this morning to help me through this moment and I will share what I am learning from them.. Giving it to God isn’t magic that gets waved over your problems – it is a surrender, but it is being honest with God about how you are feeling and trusting in his mercy and his unfailing love to comfort you. Are you able to believe this all the time? Probably not, but you just keep reminding yourself this and talk to God and your support people. I felt God’s love today come through several people. Thank you.
They have tentatively scheduled a Tues. morning operation but realistically do not think that she will be ready. This is not a setback but rather just waiting until she shows everyone that she is ready to undergo this next hurdle.