Timmy Tidbits: Pulmonology Update

Timmy had an appointment today with Dr. Brown.  The first thing they always do is get his height and weight and check his vitals.  He measured 27.75 inches long and weighed 17 pounds 5 ounces on their scale.  A little disappointing because I was figuring he had to have broken the 18 pound mark by now but we're not even close.  I couldn't remember the exact weight from Timmy's last visit to the pediatrician, but I was thinking that it was higher.  Sure enough, he had weighed in at 17 pounds 9 ounces at the beginning of September.

I wasn't expecting Dr. Brown to come in with a happy face.  He didn't.  I know his initial concern was with Timmy's weight gain/loss, but that is actually tracking really low on my radar right now and I told him as much.  I'm really not concerned because he hasn't been eating particular well, especially for the past week or so, and I think it's because he is very uncomfortable.  He's having a hard time breathing.  Couple that with a new tooth coming in last week and who would want to eat?

Timmy's trach sounded very dry the entire time we were there.  Dr. Brown listened to his lungs and Timmy smiled for him.  Such a happy little guy.  Dr. Brown said that he sounds a lot better internally than he does externally.  I told him about the blood in the secretions, the increased need for suctioning, Timmy not wanting to wear the HMEs/PMVs...  But I think I will keep trying to push them when we have to go out.  He so desperately needs something to help keep his airway moist.  We agreed that Timmy could just wear the moisture collar as often as he can when we're home, not just at night.  It does seem to help, but it hasn't really solved the problem.

It was nice to have the appointment today.  Very glad for the timing.  Dr. Brown is a really nice guy.  It was a rather somber visit, but he always seems very thoughtful, like he's trying to make sure he factors in all aspects of things - for instance, we didn't discuss feeding or feeding tubes at all because I think he's with me that the weight loss is the result of Timmy not feeling well combined with increased activity, not his sudden lack of ability or desire to eat.  At the same time, he is also very proactive.  He called over to Dr. Parry's office and we already have an appointment scheduled for Monday so Dr. Parry can do a scope to make sure there isn't anything physically giving Timmy trouble.

I asked if it seems like all the trachey kids are having trouble with the weather change and Dr. Brown told me no, just Timmy.  So that's not encouraging.  A little worried about traveling this weekend for the wedding but, hopefully, James will be feeling better by then and able to help keep an eye on all the kids, especially Timmy when we can't have him on the monitor during the ceremony.  I know it will all be okay but, I know I've said it so many times, it just makes me want to ditch the trach more and more every day.  My heart goes out to those who know that will never be an option for them.