Cohen has been in the hospital now for a little over 24 hours after being admitted from the E.R. Yesterday upon being transferred back up to the 15th floor, we received our spiffy shiny grey bracelets. These bracelets were our "VIP ACCESS" to our little guy for the 2 1/2 weeks during his last hospital stay. Ryan and I joked that we should keep them on because if we changed them out for new ones we would be jinxing ourselves. Even when they had been through numerous showers and tugs on our clothing, those trusty wristbands held up through the good and bad times. Receiving a brand new shiny grey wristband yesterday was almost comforting in a way because we were in a safe haven where he would be protected and watched over with very close eyes.
He has had a fairly boring night. Nothing to report.
This morning I strolled in around 7am and here are TODAYS UPDATES (imagine being said through a megaphone): After doing a follow-up echo this morning, the results looked great! His VSD is closing on its own as of now which is great! It has shrunk from a 3mm hole to a 1.5 mm hole which is wonderful! The more weight he continues to gain the hopes are that he will never need the open-heart surgery that we were so dreading!
On the other hand he has some issues that still continue to be persistent in him. The underlying issues with him though still seem to remain: his respiratory rate is continuously fluctuating and his feeds are not going well. This boy has some BAD reflux! This morning the monitors were showing he was breathing quite nicely and didn't need much oxygen, about 0.5 liters, which is the lowest amount you can be on. He was still sounding quite raspy, but he tends to sound that way. He was still strictly on IV fluids and had been all night so the plan was to start his first feed sometime in the morning. I informed the nurse that I wanted him to be switched over to Prilosec instead of Zantec since I truly feel that is what was causing some of these episodes to worsen. She paged the docs to come by and discuss with me.
Once he started his first feed at a rate of 24 mls/hr, even though I had informed them we were at 18ml/hr his oxygen immediately went down and they had to increase his oxygen support a bit. After discussing this issue with his cardiologist, they agreed with me and lowered his rate to 18ml/hour. It only took about a minute for his oxygen to improve and they were able to lower the level of support back to 0.5 liters.
After meeting with his cardiologist, he agreed that switching back the meds sounded like a good idea, as well as starting slow with his feeds again. He seemed to have had no reflux episodes so we will continue to cross our fingers and hope for the best. It may mean that he may need to be on continuous feeds for a while longer than anticipated but at this point who cares! Whatever this little guy needs is what we will do! Just as long as we can get him home safe and sound.
Back to the title of this post...this is where the colors begin Because he was doing better, they decided to transfer him out of intensive care to the 20th floor which was a less-intensive level of care. This was a good thing, although the entire time I had a weird feeling about it. What was wrong with me? My baby was transferring to a better floor with less support but I was comfortable here. We were comfortable with the docs and nurses on the 15th and yet because of his improvement they wanted to move him. So after moving him up and getting him situated, I traded in my GREY wristband for a neon YELLOW one. Each floor at the hospital has its own colors.
But the YELLOW wristband held its bright luster because we only needed it for about 4 hours before we changed back to the trusty old GREY wristband. Yes, we headed back down to the ICU after only 4 hours of being up there. Apparently Cohen doesn't like the nurses up there, he told me they had bad breath. I went home around 4pm and while sitting down to dinner with Ryan, Isla, and our friend Laura (who cooked one delicious Buffalo Chicken Wreath...you can find it on Pinterest), we received a call from the hospital. Ryan and I looked at each other and instantly felt like the Buffalo Chicken Wreathe was going to come right back up!
Cohen was having a hard time breathing to the point that he was wheezing and retracting (sucking in his chest) a lot. The nurse described it as "it looked like he was doing a bunch of sit-ups." They rushed the ENT doctors in to do another small camera scope down his nose to check for any obstructions. "What obstructions?" I yelled back on the phone to his nurse. He wasn't even taking anything by mouth. We were both confused. They had just done the bronchotomy about 2 week ago and nothing seemed to be obstructing his airway... in fact the ENT surgeon had said he even had normally sized airways. So what the hell was going on?
I rushed back into the hospital to find the ENT doctors and one of his cardiologist fellows standing around his bed finishing up. Apparently he had some swelling they found behind his voicebox. This could be caused from excessive reflux. It also is very common for 22Q kids to have a varied anatomy in their throat and airways. Apparently when they did the bronchotomy procedure earlier they didn't look in this area because they were more concerned with clefts being in his throat farther down. They mentioned that currently the "team" was thinking that if the swelling does not go down he may need to have a small surgery to remove the excess swelling. This could be the reason for a lot of his breathing issues and swallowing issues. They also decided they would put him back on Zantec along with the Prilosec to really support and try to improve the discomfort from his acid reflux. He has been taken off of his feeds again until he settles down and has time for the swelling to hopefully decrease.
It is now a waiting game to see how his respiratory and feeding improves. Looks like these new grey wristbands will be ringing in the New Year!