Keith has been having coughing spells for months now. Pediatrician thought it was a cold, and he did have a cold-- we all did. When the cold left, he started this strange "gasp". Again took to the dr, and they couldn't find anything. The school had been calling on a daily basis-- concerned with his breathing. I again take to the dr. This has been a repetitive process. I called ENT last week and asked them to take a look because the school insisted this was asthma (which he does have) but the pediatrician said it wasn't asthma. I got sick of the run around so I went to ENT and they thought the noises were a "habit", but since the gasping increased during gym/physical activity they wanted to check his airway via bronchoscopy. They wanted to make sure that the rebuilt airway from 2009 was holding up, because sometimes it can get scarring. They planned to take a look, and do a balloon dilation if needed. During Keith's trach times, he's had these procedures in the past (6 time to be exact) and they are always pretty quick and easy---back home in a matter of hours. I planned my day (and the kid's day) according to our previous procedures. Always pretty simple! Anyway, they go in to look today-- and to all of our surprise his trachea was BENT/crooked, off track and had a HOLE in it!! So, they did emergency surgery to repair it.
It has been a crazy day. My husband job has him near and far during the week. Thankfully, he had a close run today and was able to get home tonight. I see how much harder it is to have 2 kids when one is REALLY sick or having a huge procedure! For the most part, I function just fine with 2 kids and are standard day to day schedule. We have a great routine here-- and even if I'm a "single mom" during the week, we have a flow the house that works. Throw me a curve ball like this though, and I'll admit, I'm human!
As of tonight, Keith is being VERY heavily sedated at this point. He has tried to pull the breathing tube and all equipment off several times today. Apparently he has a very high tolerance to medications due to so many previous procedures. Right now, the tube is acting as a stint to the airway, and he needs to be still while it heals. The machine is doing a lot of breathing for him at this point, but since on such high doses of sedation, that is to be expected. They plan to start feeding by tube either tonight or in the morning. As for me, I don't think I've quite overcome the shock of this day. Just when I think there are no more tears that can come out, more come.
The positive news is-- his stoma (hole in neck that he had from his trach) is now completely closed, and the initial airway surgery they did in 2009 is beautiful and holding up wonderfully!
I'm going to try to update here (as well as facebook) as much as possible so that I can keep everyone in the loop.
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