We’ve suffered a setback overnight, and unfortunately Brendan had to have his trach put back in. I will try to explain what happened, to the best of my ability to understand the medical terminology.
There are rings of cartilage that surround your trachea to provide it rigid but flexible support. When a young child has a tracheotomy, it is a fairly common problem for the trach tube to cause one or more of these rings to collapse in to the trachea.
Here is a picture from Brendan’s trachea taken during his bronchoscopy. It shows a little bumpy scar tissue, but that whitish bulb protruding in to his airway is a tracheal cartilage.
The doctors all went in to the procedure expecting to find soft scar tissue that they could scrape away easily. All of his studies and labs and numbers gave them no reason to suspect he had this kind of collapse. For that reason, the operating room was not set up with the tools and people they would need to treat it.
But they found during the bronch that when the trach tube was pulled out, the cartilage kind of popped back a bit and did not cause a great blockage.
He did so well with the trach tube removed that they sent him to recovery without it. He had such a great afternoon and really seemed to be handling everything like a champ! I even took him for a walk around the hospital unit to stretch his legs before bed.
He went to sleep and everything seemed normal. But it was about 11:30 when he started to wheeze. As the night when on, he developed a stridor like a child that has croup. He was working harder and harder to breathe. He was sweating profusely.
I am fairly angry at the advice I got from the overnight attending physician. He claimed that it was nasal congestion causing the noise and not airway restriction. On his advice, the nurses used saline and suction to try to clean out Brendan’s nose. He woke up to a 3-person attack on his sinuses and was terrified and disoriented. Needless to say, all that was accomplished was making Brendan miserable.
When his ENT entered the room to check him early this morning, he didn’t even have to make it to the bedside before he knew what was wrong. We had a good long talk about the options and decided that it was in Brendan’s best interest to put the trach tube back in until that cartilage could be addressed. We can only assume that when he is awake and active, the muscles in his neck are engaged and supporting that cartilage. During deep sleep as everything relaxes, it allowed that to pop back in to an airway blocking position.
We are waiting for that doctor’s office to get everything together to setup the new procedure. It will all go almost exactly like it did this time, only instead of a plain bronchoscopy, they will do a KTP laser bronchoscopic excision of the tracheal cartilage. He should still be able to have the trach removed right after the procedure and it should be a one night stay to be sure this problem does not reoccur.
Here are a couple of pictures from last night when we were all celebrating seeming success.
Even sleeping at first, his numbers were awesome.
I know this is just a setback, I am just so disappointed that Brendan will have to experience this whole thing all over again. It is a traumatic experience for him, for all of us really.
I got a few patches of 15 minutes of sleep here and there so I tried to take a nap today. I got down on the floor with a pillow next to where the boys were playing legos and closed my eyes for a bit. I woke up to find a little Brendan had curled up next to me to join me. 🙂 🙂 He is so cute.
We are all just happy to be home, and can start preparing for decannulation part 2.
