It is no surprise to my friends here that I absolutely HATE the fact that Hannah had to be trached after this past hospitalization. We had been able to avoid a trach since she was 8 months old and then she had to be trached, NOT because of her Gaucher’s disease, but because she could not be extubated because she was oversedated.
Hannah is not a fan either. She pulls at the HME (the plastic covering on the trach) at least 100 times a day, most of the time taking it off and tossing it aside. Other times, she tries to pull out her trach from under the collar. Twice she has pulled it out halfway, and fortunately, I was able to get it back in without any issue.
Last night, we were watching TV. Daddy looked down at Hannah resting on the floor, and he noticed that her trach was completely out. She had taken the entire thing out! After a few minutes, we were not able to get her 3.5 Shiley in, so we grabbed the 3.0 Shiley (smaller). We were able to get that one in without any problems. Then, we were able to put back the 3.5 Shiley.
The entire time Hannah was “decannulated” (without a trach), she was completely fine! No breathing distress whatsoever, even though the stoma (hole) was covered while we were trying to get her trach back in. She was breathing through her nose and mouth. Honestly, we looked at her for about 30 seconds while the trach was out, and she was still playing with her toys in her hand, lying on her back, not realizing anything was different.
She was able to breathe normally without the trach. What is especially notable was that after those first couple of minutes, the stoma was completely covered by excess tissue (which is why it was hard to get it back in at first). It was awesome to see her breathing without any distress.
In the next two weeks we meet with her pulmonologist and her new ENT. Her pulmonologist seems to be a very conservative guy, as we get the feeling that he feels that we should keep the trach in because she MAY need it in the future because of her Gaucher’s Disease.
I’m not a fan of that philosophy. Hannah’s two favorite activities are limited by her trach — swimming and bath time. If I could give her back those two activities that she loves, even if it is just for 6 months to a year (in case she needs the trach in the future), then I want to give it to her. It would be one thing if Hannah’s condition was not as life-limiting — then we could take our time on the trach issue. But unfortunately, it is life-limiting. And while she is able to breathe freely on her own, without any airway issues like laryngospasms, etc, then I want her to have the time for as long as she can.
Obviously, I will in no way put her life in jeopardy to get this trach out. If it turns out that she truly does need it now, then so be it. But if we do have to keep it, I want it to be because she needs it not because she MAY need it at some point.
Got to love trachs. My daughter has had one since she was 3 months old, she is now 18 months. I can agree on how life-limiting it is but without it where would she be? I ask this to myself all the time. I have hopes we can get rid of the trach but not sure how soon. Oh the day I do not have to worry about her trach or have to carry the suction machine everywhere we go….that will be a GOOD DAY.
I look forward to following your blog. Hannah seems like a special girl. I believe there are a lot of things we have in common.
I am going to proudly display Hannah’s button on my page!