Road to a trache-free life

We met with Dr. Schroeder, Hannah’s new ENT today. I immediately liked his business-like, yet easygoing demeanor.

We talked about Hannah’s situation, why she was trached, what happened when the trach came out (breathing wise), etc. We talked about how Gaucher’s disease causes airway issues in many of its type 2 children and some type 3. We discussed how Hannah is really a hybrid of both types. We talked about her swallow studies and her problem with her gag reflex and solid foods. We talked about her breath-holding spells with her tantrums.

It was nice just getting everything out in the open and lay everything on the table. That way, when I brought up the topic of decannulization, there would be no surprises and nothing hidden.

Dr. Schroeder is very open to the discussion of the possibility, especially in light of the fact that she was not trached for airway issues but because of over sedation. He made the comment that he usually does not like to talk about decannulization until a child is 3 years old or 30 pounds, but Hannah’s situation is unique (both in terms of her Gaucher’s and her reason for trach), so he would be open to it.

He also asked me which pulmonologist we are working with. I told him that we have an appointment with Dr. Nakamura next week, and I explained to him what happened with the other pulmonologist. Funny thing, he was not surprised at all that the other pulmologist was so dead set in his no-trach-removal stance.

He understood my feelings that I want to give Hannah as much freedom with her life for as long as she can tolerate. Even if it means being trach-free for just one year, that will be one year of swimming, going to the beach, fun bathtime, and less machines and medical care. Time is very precious with her, and I want her to enjoy it and keeping smiling as long as possible.

He was glad we are meeting with Dr. Nakamura because he “has worked on many cases like this with him, and they work well as a team together.” Words an anxious mom wants to hear!

So the plan is this…

We meet with Dr. Nakamura next Friday. He will see how Hannah’s lung function is and other related issues. Then, if he is on board with the trach removal (because he feels it is safe to do so), then we will move towards the final step…the operating room. In the OR, the ENT will do a bronchoscopy and see how Hannah’s airway physically is, and the pulmologist will look at whatever he needs to look at. If they both feel that it is safe for Hannah, and they feel that she will be successful with the trach out, then we get her ready for it! I’m not sure if they do it later that day (after the sedation wears off) or another time, but they will bring us to the hospital, pull out the trach, and it is done!

The ENT wants to keep her in the hospital overnight as a precaution (especially to keep an eye on her O2 sats while she is sleeping). I actually welcome that because I would rather be safe than sorry.

What really is comforting is that our new ENT and new pulmonologist (hopefully) will be taking all precautions to make sure this is the right decision for Hannah. If for some reason they feel that it is not safe to take out the trach because of her breathing tolerance or bad timing (ENT mentioned that the pulmologist may want to wait until after RSV season this winter), then I will feel that at least we are taking the right steps to make sure this decision is the right one.

As our ENT said in our appointment today — our goal is to keep the trach out for good and not to have to have it go back in right away if it can be avoided. I really feel that this is the right approach.