So Hannah was playing with her toys, and her nurse (who we really like) was sitting just about 5 feet away. At some point within a 10-minute period, Hannah completely pulled out her trach again. The nurse didn’t notice because Hannah wasn’t having any breathing difficulties and her back was turned to the nurse.
Just like a few days ago, we couldn’t get the 3.5 size in so we put in the 3.0. size until she calmed down a couple of minutes later. But this time, we could not get the 3.5 size back in. Towards the end of the cannula, it seems to stop as if something is in its way. It also causes Hannah to cry out, and there is a bit of blood-tinged secretions — we are thinking she must have gotten some kind of irritation when she pulled it out.
I called the pulmonologists office (who “handles” the trach kids here), and of course there was no one available to see us that afternoon. (It is a clinic, and he is the only pulmonologist — there were only residents available, and truthfully, I don’t think they would know what to do anymore than we would!). So we kept the 3.0 in.
Like before, Hannah had no breathing issues whatsoever when the trach was out nor now that she has the 3.0, the smaller size.
Fortunately, we have an appointment with the pulmonologist (set 6 weeks ago) for tomorrow afternoon, so I am very curious as to how this is going to play out. I know he is of the mindset that “Well, she has Gaucher’s so let us not take the trach out because she MAY need it someday.” But I’m hoping that tomorrow he will see how much better she has recovered and will actually listen to my concerns and what I want.
But I am a bit nervous. As much as I want this trach out for Hannah, I want it done safely. I want to feel comfortable that it is the right time and the right way is being done. I don’t want to cause her any damage or put her in danger, you know?
We have to keep such a closer eye on her now. When she gets annoyed with her trach, she will really tug at it now. Unless we completely choke her with the trach ties, she will find a way to get it out it seems. She has done it twice in a week. VERY nerve-wracking!
I’m VERY anxious as to what tomorrow’s appointment will bring!
Really hoping everything works out for little miss Hannah and her Trache..
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I love how she just doesn’t accept it. Hannah has a courageous and fighting spirit and she’s not going to let the trach get in her way!
Yikes…I am not even sure how you would keep it in if she does not want it in. PTL that she is doing fine even after pullin it out twice.
Hannah really has a mind of her own doesnt she? It really seems like she just does not want it anymore and seems to be doin well without it like you say.
Im sure its a tough dission and so very nerve wrecking and I hope everything goes well at your doctors appointment tomorrow and that he really listens to all your concerns and WHAT YOU WANT! You have every right to be nervous and concerned, you only want whats best for Hannah!
Good luck for tomorrow.
Susan