DeJa Vu

Unfortunately, today Cohen was readmitted to the hospital.  After a morning long of breathing episodes (primarily increased breathing rates and increased reflux spells), after two of his feedings, I decided to call his cardiologist.  Based on our Q and A he felt it was necessary for him to be seen by the ER to rule out any possible aspiration.  His breathing didn't seem to be the same as it had been in the past and he seemed to be really "working" to breathe.

I packed him and I up and drove to the hospital. Luckily Isla and Daddy were having a "date" day down at the Disney Store.  We were seen fairly quickly and put into a triage room while we waited for the doctors to check him out.  While waiting for the doctors, his nurse attached him back to the monitors (those dreaded monitors!)  Part of me was brought back to a few weeks ago feeling anxious all of the time and constantly checking the monitors.  But the other part of me was slightly relieved that I was able to instantly see his oxygen levels, respiratory rate, and heart rate.  All morning I had been using my stopwatch on my cell phone to time his respiratory rate checking to see when it had improved and worsened.  I was able to breathe easier knowing exactly what his numbers were.

I was holding him in my arms when he suddenly he spit out his pacifier and began making a choking sound.  After a few coughs, he began to turn blue!  This sight was something I had never seen before and something I would never want anyone to see their baby do.  It was extremely scary and a new low for him.  They decided to put oxygen on him.

The doctors rushed in and told me that his blood gas levels were extremely high (meaning he had more carbon dioxide in his blood,; he was having to work very hard to breathe).  They mentioned having the possibility of putting in a breathing tube to help him with his breathing. I instantly broke down and started crying in the ER room.  How could we be in such a different place than we were a week ago?  He was fine just the other day on no monitors and suddenly now he was hooked up to everything, cords coming out every which way from his bed and now they wanted to put in a breathing tube?  I immediately stood my ground and told him I think we should wait a bit. This was the first time that I had to stick up for him and be assertive.  I have had previous conversations with another mom I found on a 22Q support group on FB who words had resonated with me back when I was pregnant and researching about his disorder.  She had said, "there will be times when you have to be brave, courageous, and stand up for him!  You'll have to go against doctors sometimes and that's ok!"  This was that time.  They decided to check his levels again and they had been wrong withe first results.  For some reason they came back still slightly high but about 1/2 as high as they were previously and they were less concerned.  I guess I really do need to stand my ground from here on out and be his advocate for life!

His cardiologist came in to visit with us while on rounds and reassured me that he was not worried about his heart and that this was more of a respiratory issue probably resulting from aspiration.  They performed a chest Xray.  The Xray came back clear; however, it does take sometimes up to 24 hours to show possible aspiration.  They decided at this time it would be best to monitor him more closely for at least 24 hours and admit him.  We would be returning to our old stomping grounds on the 15th floor.

They checked us into Room 1510, a room we have not yet been to, but one that has a great view of Lake Michigan.  The cardiologist fellow on call that night came to visit with us and hear the play-by-play again from me regarding his morning events.  After hearing what I had to say he suggested that we may want to consider having a gj-tube installed.  This was a tube that would still go through his g-tube site but would lead into his small intestines.  The reason for considering this now is because they are thinking even with the g-tube and without even taking anything by mouth, he was still having an increased frequency and volatility of his reflux episodes.  At the same time one of my main concerns is the fact that we switched his reflux medicine from Prilosec in the hospital to Zantec at home due to insurance not covering one.  To me, he has had a significant amount of increased reflux episodes with switching the meds, but the doctors don't necessarily buy it.

Game plan for tomorrow is to go in with guns blazing and stand up for this little guy!  I'm insisting that we first switch his meds back to Prilosec and then possibly change the quantity of feeds he gets before decided to go through with yet again another surgery.  Wish us luck and think positive thoughts that our hospital say is a lot shorter than it was before!