Frustrated

It has been a rough weekend. Nothing we can't overcome, but some setbacks to say the least. I have mentioned in previous posts that time would tell the side effects from the vascular ring repair (Ethan's whole aorta was wrapped around his esophogus). Well we are starting to find out. Ethan was keeping his oxygen saturations up while they were weaning down his oxygen from the nasal cannula, however he was working harder and harder everytime they lowered it, had increased stridor, and has been very irritable. Finally they ran some blood work and realized he was not doing as well as they thought at exchanging air so they put him on CPAP. That is one step away from being on the ventilator again. It has helped.
An ENT doc came down today to evaluate his trachea and vocal chords. He still has a lot of swelling pushing on his esophogus and trachea. This made it hard to see the chords, but it appears that both of his chords may be partially paralyzed. They could be this way for a few weeks or a few months. The problem is they are obstructing Ethan's airway making it hard for the air to pass, thus he was having to work so hard to breath. The docs are starting additional steroids to get the swelling down and will re-evaluate in a few days. But it looks like are stay is going to be even longer and we may have to take some additional measures to help him with breathing. If the chords are paralyzed they also will not let him start trying to use a bottle. We will have to go home on NG tube feeds! Fun times :)
The other bummer is that Ethan thinks being held is overated! He is so irritable right now from EVERYTHING he has been through that he does better if you just leave him alone. It is hard to see your little guy struggling and not be able to pick him up and comfort him. But he sure is beautiful to look at!
Loves to all-
Heidi