Pulmonology update

We had our follow up with the pulmonologist yesterday.

Even though we were supposed to follow up after 4 months, it ended up being 6 months since we had seen him.   The day before I ended up in the hospital was the day of her appointment, and I just wasn’t up to it (now I know why).

It had been one year since she had been trached.  We discussed what needed to be discussed.   We went through all her procedures (like her humified trach collar at night, not using an HME because she coughs out 99% of her secretions, etc).  He commented on how great her trach stoma (hole) looks, and how well she seems to be doing pulmologically.   Really, we just had the two bouts of trachiitis since we had seen him last and that was about it.

We didn’t talk about trach decannulation, but the truth is, I didn’t bother bringing it up because I just don’t feel he knows enough about Gaucher’s to really make a good judgement call on this.  Hopefully Dr. Roy’s Nevada license will come through soon so he can help us with that decision (I know it is already in the works).

He took a trach aspirate just to see if there is anything growing that we don’t know about (which he does at every visit).

When I asked him when he would like to see her again, I was sort of taken aback when he said “6 to 12 months.”  Wow, really?   I mean, it makes sense, but since pulmonology issues are so common with Gaucher kids (respiratory distress, pneumonia, etc.), I just expected him to say “3 or 4 months” again.

It was really a great feeling knowing that, at least pulmonologically, she is considered stable at this point.