Timmy Tidbits: The Decan Plan

(In case you aren't aware or just remember my previous misnomer, the correct term for trach removal is decannulation.)

Timmy and I (well, more just me.  He slept through the whole thing) met with Dr. Parry on Monday afternoon.  It was an extremely windy day.  We've had a number of those recently and I think they did a number on our kids.  Last Wednesday and again on Monday, Callie complained of an ear ache.  Landon claimed one on Sunday. At the same time, both Trevy and Timmy were waking up with goopy eyes.  Trevy's were red-rimmed and honestly looked like she either wasn't sleeping or was in serious need of Alcoholics Anonymous.  Thank heaven for extra amoxicillin!

Between his recent spills and the goopy eyes, Timmy wasn't looking so great.  Fortunately, Dr. Parry didn't really need to look at him.  He came in with one of those deeply pensive looks on his face, asked how Timmy was doing and then told me he had been thinking a lot about Timmy over the weekend.  Well, he is really cute.  Happens to me all the time...


How much does he weigh now?  Just over 22 pounds.  He's right within range.  He's just so small still...

I told Dr. Parry that it's kind of funny that he's the only one who says that anymore.  Now everyone comments on how big he's getting and the progress he has made.  But I know he's coming from a completely different standpoint - everyone else just sees the outside and enjoys how interactive Timmy has become over the past several months, but Dr. Parry is visualizing the inside and contemplating the complexity of performing surgery on this tiny airway.

After the bronchoscopy back at the beginning of March, I had figured we would be waiting until at least July to even discuss setting a date for decannulation so I was completely unprepared when Dr. Parry said that he's ready to take Timmy's trach out.  The only problem is that he's not entirely certain how he wants to go about it.

Remember that anterior tissue?

That's option #1.  James and I are still optimistic that lasering that off and dilating Timmy's airway could open things up enough that Timmy would be free of the trach.  However, there's also a chance that he could end up scarring back down and needing either repeated treatments or the rib graft I have so been longing to avoid.

Option #2 is a cartilage graft.  Dr. Parry would take a piece either from Timmy's ribs or from his cricoid bone to enlarge the stenotic area.  Going this route would be a done deal.  No worry of Timmy scarring down.  He would be decannulated.

I honestly hate the thought of having Timmy cut into any more than he needs to be.  He already has a long scar across his abdomen and three puncture scars in his right thigh.  No matter how we decannulate, he's going to have a scar on his neck as well.  Granted, if the laser treatment works, it will be smaller, since it's an interior procedure, as opposed to having to widen the tracheotomy site to place the cartilage.

Dr. Parry and I went back and forth discussing the pros and cons of each.  Still wish I would have asked him which he would choose were it his child.  I did tell him, though, that there are additional factors to take into consideration now: 1) our COBRA insurance ends 7/31 and, after that, I'm not sure what we're going to be able to find as coverage for Timmy.  Now that James owns his own practice, we are no longer under a group policy and there was considerable red tape to wade through just in talking to insurance companies about covering Timmy on a family plan.  2) Baby #5 is due in August.

Timmy has been absolutely stellar with the Passy-Muir valve.  He can wear it all day long and has even started saying more words: Bah-bah (bottle), egg, hi, Mita (Missa).  Watching him sleeping with it on as we spoke, the movement of the valve was almost imperceptible as he inspired and I truly believe he is breathing around the trach a lot these days.  Which leads me to wonder how much he depends on the trach anymore anyway.  Dr. Parry asked me if we have tried capping him.  I said no.  (Not sure how to go about that.)  But I have tried letting him go without the trach since and he actually did quite well, although I'm sure he's more comfortable with it in.

Taking all that into consideration, ultimately I decided that I would like to at least give the laser treatment a try.  If we can get by with the less invasive procedure, I would be ecstatic.  If not, we won't have time for repeats.  We will be hard-pressed as it is to get Timmy back in for the graft by the end of July, if it comes to that.  The first procedure will be a month out (sometime in May), followed by the waiting period to see how Timmy's trachea responds and then we would have to get Timmy in ASAP in July if he still required addition treatment.

Obviously this isn't a decision I was going to make on my own, I just needed to give them some way to proceed on scheduling Timmy's surgery.  So that's where things stand.  I talked to James as soon as he got home and he's now on the same page with me - total quandary.  We both agreed on trying one laser treatment, but I can't help wondering if we should just go the route of the graft and be done with it.  But we could still possibly be done with it with the laser too!  Just wish there were more certainty that way...