The Unknown.

March 25, 2020

The Unknown.

Joey is still on 2 liters of vapotherm, as he was yesterday too. This morning, Daniel said his head was sweaty and he was working hard to breathe, while he was in a very heavy poopy diaper, so he decided not to wean today. His oxygen requirements have been about 49, which was a little higher than yesterday. The oxygen requirement has increased, but I have no idea what this is due to. No one actively weaned him yesterday or today though, but Daniel did make the comment that he could have been weaned. We will see how he does today, and we'll decide then. We can decide if we should do 1.5 on vapotherm or 1 liter on the wall. We have our care conference scheduled for tomorrow where we will meet with the NICU team and the pulmonology team. I need to get my calendar timeline together. We did notice that when Joey pulls his cannula out, he does last a few seconds longer before he desats.

Today some really fun things happened though. Joey got to eat baby food for the first time, and he loved it. The speech therapist brought sweet potatoes and smeared it all over his lips so he could stick out his tongue and try some. He did exactly what I thought he would do-stick his tongue out and tasted what was on his face. He stared intensely at her while waiting for more food. It was so cute to watch because I think he truly enjoyed his food.

Daniel said he really enjoyed playing with his toys today too. liked touching his books. He also had a good visit and workout with Sara. He has definitely improved with his tolerance for sitting up and I think he is getting closer with holding up his head on his own more often. I'm so proud of him for making this progress.

My heart really wants for him to keep trucking on with his breathing. I can tell he loves to move it, move it, and he enjoys having fun and playing. I really want him to breathe well so that he can do the things that he loves.

I also really miss seeing him. Since Daniel and I can't be there at the same time, we take turns seeing him every other day. I thought that I would be able to handle this easily, but I really miss the boy. It will be really nice to be able to see him from the comfort of my own home.

I'm nervous about his care conference tomorrow. I'm scared to take him home. I'm scared of what's going on in our world right now with this virus threatening to take out our health care system. I keep reading about how there is a shortage of ventilators, and that because of Joey's diagnosis, he would not qualify to receive one if he has to be taken back to the hospital. I'm not sure if he's safer in the NICU until this pandemic passes, or do we take him home and pray that he doesn't need to go to the hospital over the next couple of months?

I have to remind myself to keep living in the moment.