I have been persuing getting a home ventilator for Ambrose since we have been here. It was brought up in the past when he needed CPAP but we wound up opting for getting CPAP through a different system. He weaned off of it but we continued to use it at night preventatively. When he was sick we used it all of the time. One of the problems is that it is not portable. I didn't want to take him off of it to go to the Dr. Also, it is not actually delivering the amount of PEEP it is supposed to because we do not have the high flow it needs to work properly. Additionally with the occasional episodes that he has had where he required some bagging, I feel that the ability to give him some pressure support would be a good thing. It seems that everyone was in agreement about it and I was trying to prevent his discharge from being held up because no one initiated the process of ordering this equipment and arranging for training me, etc. I've been asking about it for a full week. Today, after really pushing it has only just now been ordered. I'm told it can take a week unless they actually had one in stock, which I won't know until tomorrow. So frustrated! We need to get home and he is doing much better.
An additional issue that needs to be figured out is his trach. His anatomy is so unusual that standard trach tubes often don't sit right in his trachea and can occlude causing him distress. The reason is not always apparent to those around him who wind up giving him additional support that he may not need when the problem may be simply: airway.
He has been using a custom trach that is longer and has a sharper curve than usual. The ventilator has a problem with the air leak around that trach, so he needed to have a cuffed trach put in. It is hard to get in and causes bleeding. The cuff is inflated so there is no air leak, allowing the ventilator to work more efficiently. Of course, it is not custom made for him, so there are issues as mentioned previously. One being that he seems to need an unusually high amount of air in the cuff. There have been a few times he has seemed to be gasping through his mouth which shouldn't happen when you have a trach. The solution had been to go up to a bigger size. Now they are talking about a bigger size yet. I'm not sure if he is going to need this for home. I really don't want to have to force a large cuffed trach into him, causing him to bleed. They ordered a custom cuffed trach but it takes weeks to get and they've changed size since then anyway. I'm waiting for the ENT Dr to come scope his trach again. Of course he is looking through it when he is in a perfect position, not necessarily how it looks as he is moving throughout his day.
Right now he is off on an expedition to get a flexion/extension CT scan to look at his C-spine.