We had a fantastic Christmas, but I want to wait until my pics are done uploading before I share all about it.
Tonight Daddy changed out Hannah’s trach like we do every Sunday night. Out with the old, in with the new. Trying to keep things as clean and sanitary as possible.
I was with Ethan in my office when I heard Daddy yelling for me to get over there quick. Ethan panicked (as he usually does at first) and I ran to the family room.
Hannah was visibly upset and panicked, and she was trachless. For whatever reason, this time she got very upset when Daddy changed out her trach to the point where she clenched up, started breath holding, and completely freaking out. When this happens, it is much difficult to get the trach in because it is tighter and she is freaking out. Abby even started noticing that “Hannah’s face is changing colors.”
She started turning blue around the mouth. She was trachless for about a minute at this point, and I just sat there holding her hand trying to talk calmly to her to get her to release the tension in her throat. Daddy got the smaller size trach, and with that combination (her calming down a bit, the smaller trach, her becoming less tight), we were able to get her trach back in.
The color around her mouth started to come back from the bluish-grey. Daddy was able to change the trach back out from the smaller one to her normal size without any problem. She was really junky afterwards with all the manipulation, so we had to suction quite a bit of blood-tinged secretion to get her clear.
She is fine right now.
But the one thing that really freaks me out, after the fact, is that Hannah did not try to breath through her mouth and was having a breath-holding spell during this. She can breathe fine through her mouth when she is capped, but when she panics, she breath-holds. It is a neurologic response, not something we can tell her not to do. This is what sent us to the hospital back in May — the tantrum, the breath-holding, the hypoxia-induced seizure, and the possible anoxia-induced stroke.
Daddy and I talked about it tonight, and we both think that maybe getting rid of the trach in the spring may not be in her best interest. Not because of swallowing difficulties, not because of laryngospasms (the typical Gaucher reasons to get trached)… but because of these damn breath-holding spells. It is disheartening to come to this conclusion, and we aren’t making any decisions about it right now, but NOW we are not expecting to get rid of the trach in the spring like we have been. It is now something we will have to think more seriously about.
So many things go through your mind when your little baby is turning blue and your two other children are right there watching it…sucks.
Oh Carrie I’m so sorry. I wish I could make this all go away for you and Hannah. I know that feeling and watching the color change. My heart aches for you. But she is so strong and amazing, and you my friend, the strongest woman I know. I love you. Hugs to Hannah from Charli and me
So sorry to hear that she had an episode over the weekend- that’s likely why I change trachs here during the week. Deciding to keep the trach may be a good thing if you think it is. I commend you on trying to decide the best option even if it’s not the simplest. My kids could be decannulated if we undergo “major major MAJOR SURGERY’ [to quote my ENT] but, when pressed for a reason it was more about my “dealing with” the work of having 2 trachs, NOT about an improvement in their health or a need to remove it to prevent any damage progression to the trachea. I opted ‘no’ until they are older (4.8 now)- ENT thinks that’s great as “every mm helps” him to get a better result. Sorry you are having to prolong the trach but glad it is a useful tool in Hannah’s fight. HUGS
I wish you still lived down the street so I could come hug you right now. =(