Return of the oxygen

Aren't sleeping children one of the most peaceful things in the world to look at? :)

We have found a heart surgeon in South Carolina who has agreed to look at Lilly's case. He has operated on other children with Trisomy 18 with good results. Lilly's local cardiologist is sending him all her information this week. So hopefully we'll have a second opinion before too long.


Yesterday the pulmonologist called me with the complete results from Lilly's most recent sleep study. It was drastically better than the first study which we credit to keeping Lilly's weak tongue out of the way by placing her on her side to sleep. However, she still had two "respiratory events" and so needed a tiny bit of oxygen to keep her levels consistent. So the doctor prescribed oxygen for when Lilly sleeps, at the rate of 1/2 litre.

The big oxygen tank (called a "Christmas tree") and a "concentrator" and several portable tanks arrived today. We're to mainly use the concentrator and the "Christmas tree" is for backup if the electricity goes off. A cannula will be taped to Lilly's face to supply the oxygen. (Rats! I hoped we would be done with tape on the face soon! Poor baby.) I hope the cannula will be comfortable with her sleeping on her side.

Someone is supposed to come out and set up a pulse oximeter too. I'm supposed to let the doctor know if Lilly's oxygen stats fall under 90. I'm not that thrilled about the pulse ox. Every time Lilly has been hooked up to one in a hospital, it malfunctions frequently. (She has a hard time keeping the sensor on.) That's not something I want to deal with in the middle of the night.

Which leads me to a practical question for any parents reading this who have children hooked up to oxygen. Do you always use the pulse ox too? It seems sort of silly for me to use it at night because Lilly goes to bed when I do and I get her up when I get up. So unless she wakes me, I sleep! Therefore I won't be monitoring her pulse ox. It makes more sense to me that I would hook her up to it at nap time. But do I do it every time? I want to help Lilly the best I can. But I don't want machines to control our life either.

Today's oxygen delivery man noticed we had a piano. He said he played some. He tinkered a few keys as he walked by it so I asked him if he wanted to play something. He surprised me by saying "yes" and asked if I minded if he played a gospel piece. He sat right down and began playing and singing. It was great! He was really talented. We were then able to acknowledge our mutual love for Jesus and I got to tell him how much God had done for Lilly.

"For I am not ashamed of the gospel, because it is the power of God that brings salvation to everyone who believes: first to the Jew, then to the Gentile. For in the gospel the righteousness of God is revealed—a righteousness that is by faith from first to last, just as it is written: “The righteous will live by faith.” - Romans 1:16-17