April 29, 2018

Over the past week, Charlie has had some setbacks. He started out on the high flow nasal cannula but it was too much for him too soon. He had some lab work done and it showed that his body was retaining carbon dioxide even though his oxygen levels looked good and he looked like he was breathing without much difficulty. Because of this, they had to put him back on CPAP.

When they found his CO2 levels were high, they tried to increase the amount of oxygen he was getting from the high flow cannula. When that didn’t work, they changed him to a different cannula, (RAM), that works more like CPAP, and then actually putting him back on CPAP when the RAM didn’t work. They did a chest X-ray and found that his right lung looked slightly collapsed. They want to give him some time and see if the CPAP will help correct it before deciding if something else needs to be done.

It has been hard to watch him take one step forward and two steps back. He got use to having barely anything on his face, so he hates being back on CPAP; He gets very upset and fusses a lot more. He has been doing so well, better than anyone ever thought he would, so it’s easy to forget that he was born so early and these setbacks are minor compared to how things could have went for him. Nevertheless, it is hard knowing that he was moving in the right direction; getting closer to being on oxygen that he could potentially eat with and being a step closer to bringing him home. Now, we are backtracking and not close to bringing him home any time soon. It’s discouraging, but we are always so thankful that he is here and feel blessed beyond measure.

We thank you for your prayers and ask that you continue to pray for Charlie’s lungs, and that the doctors and nurses will have the wisdom to know how to help him. God has given us the greatest gift and we know He has big plans for Charlie! It can be very hard to be patient, but we trust in God’s plan and timing. Hope you all have a blessed week!