Me and this sweet little guy spent some one on one time together because he had an early morning appointment with ENT. My mom kept the other kids overnight and we stayed at Nanny’s house to be close to the hospital..
Ill blog about our other adventures later but wanted to blog now about the appointment.
I really wasn’t expecting much to happen. I expected to leave feeling like nothing was accomplished but I also planned on asking them to downsize his trach (give him a smaller size) in attempts to get him closer to being capped and decannulated. In fact, Ive been pushing for decannulation (removing the trach) and probably driving the doctors nuts. The longer he keeps the trach, the more problems he will run into. There is risk with removing the trach – like if he needs it to be vented at a later time – but I’m trying to remain optimistic and deal with that when it comes. There is more risk in keeping the trach in.
So when the nurse and doctor came in today I told them how he has been doing (great) and that just the other day his trach was completely plugged off with secretions (making it where he could not breathe in or out through his trach and instead had to pass the air around the trach and out his nose/mouth) and I didn’t suction him out to clear his trach because he was doing well. He did so well in fact that I didn’t suction him out that entire day until it was bedtime. He has done this multiple times in the past as well – not all day long, but long enough for me to know that he can breathe well without the trach.
Instead of offering to downsize the doctor asked about capping.
Heck yes! I don’t think I could have said yes fast enough. So they brought in this lovely little white cap and closed his trach off to see how he would do. This cap makes it where he cannot breathe in or out through his trach. Instead he has to breathe through his nose/mouth. The trach remains inside him, but there is enough room between it and his airway that he is able to move air around it. He did great. His pulseox didn’t drop below 96.
We got the go ahead to cap him during the day. He cant be capped at night time though until he has a sleep study. He did really well today and he loves that he is able to make more noise. I always hate removing plugs from his trach because he seems to enjoy how he is able to talk with them.
For some reason I cant get the video to embed but if you click on this link below you can hear him talking to his pizza box.
The poor folks at Target had to listen to him talk non-stop but I just smiled and let him carry on. During the drive home he was yelling “Weeeeee!” and “Woooohoooo!” and I just continued smiling and laughing. His voice melts my heart.
So basically, this is a HUGE step in the right direction for him.. He will have to have a few surgeries before the trach can actually come out as well as a sleep study, but this is one step closer to that happening.