Update #9
Update on Tobias - 1/10/24
Please continue praying!!!
This week has for sure been one of the hardest ones yet. Tobias is back on max support. On Sunday he was really struggling and there was nothing else they could do. He was on 100% oxygen and only stating between 68-72 (which is really not good.) The doctors don’t really want him to be stating below 92 with everything going on with him. We were very scared about what was going on because we didn’t want to lose him and felt helpless that there was nothing to do. That morning when the doctor came in to do rounds, she could tell we were scared. She asked us what our understanding of what was going on was. We told her that we knew it wasn’t good for him to be down that low for too long. That’s when she told us that it was our decision but it might be time to start thinking about putting him on comfort care. Which to Nolan and I feels like we are taking his life away from him. We were so upset about having to even consider putting him on comfort care that our nurse made a special arrangement for us to have our moms come in with us for support. That afternoon a different doctor came in to talk to us to answer any questions. I asked him if he ever saw a baby come back from where Tobias was. He told us that the only thing left to save him would be a miracle. There was nothing more medically they could do. In church that morning we had our church pray for Tobias and for whatever God’s will was for that to happen. About 1 oclock that afternoon he started slowly improving. We came to the decision that as long as Tobias kept fighting and his body wasn’t shutting down, it wasn’t the day. I don’t ever want to think did we give up too soon on him. He’s still on max support and on 100% oxygen but he is slowly stating a little better each day. Today he was stating 99 for a little while where they almost could have turned down his oxygen requirements. It was time for his cares after that so he dropped back down to the low 90s, which is still a huge improvement. I keep telling Nolan one of these times we will walk into his room and be shocked that he’s no longer requiring 100%.
Recently we had a nurse ask if she could sign on as one of Tobias’s primary nurses. We of course told her we would love for her to. Sunday night she had the idea that we try playing music for Tobias to listen to. He absolutely loved it. He was really loving some of the more angry stuff. Which that definitely describes his personality with all of his sass that he likes to give. He also really likes Lainey Wilson, Luke Combs, Morgan Wallen, and Raelynn. His oxygen has slowly been increasing when he hears them or it drops any time an ad comes on. I can’t blame him for not liking ads, who really does.
Another big change that he’s made is they have turned off the heat in his bed. Yesterday they had it turned down as low as they could get it and he was still running hot. So they popped the top up on his bed and put a fan on him to cool him off. It’s been like that for 24 hours and he is still maintaining a normal body temperature. We have a very lightweight muslin swaddle around him so that he feels confined.
He has also started changing what they put in his milk to give him more calories. This is because he is getting older now and what they were giving him before was for the younger babies. It’s still my milk just a different additive. They also started him on prune juice, which I didn’t know that babies can have. All of the medications were slowing things down for him to where he went a whole week without pooping. Yesterday was the first day he got it and it really worked. We went through 3 diapers in one diaper change. He just kept completing filling another one up.
Tobias has a very long way to go and we have started to talk with a pulmonologist as well about him. More than likely he is going to need a trach when the time comes for him to go home. We know that will be a lot of work and it won’t be easy, but we have agreed whatever Tobias needs that is what we will do.