Jan 23, 2009

We Got A Cap!

A crowded car driving carpool to school and then the appointment. Thankfully her trach didn't need suctioning during the 5 minute drive there, she was able to wait until after the other 4 kids got out of the car. Sheesh.

Waiting, always waiting.

Ainsley wearing her cap for the first time AND getting scoped.

A snapshot of her airway (and epiglottis) from the scope.


The appointment today with Ainsley's new otolaryngologist went pretty well. We were afraid he may just scratch his head like he did the day he saw her in the NICU. She wasn't his patient then. Today he was funny, actually sang Ainsley songs, was attentive and thorough. He gave me a bit of a hard time about taking her to Cincinnati last April, asking how much I thought that cost and did it make any difference in managing her care. When I replied that the FEES was more informative than a VSS and that they did a chest CT and found bronchiectasis (irreversable lung disease) last April, and that they offered to do a saliva gland removal (which we opted not to get) I think he realized that perhaps it wasn't a complete waste of time and money. Oops. And I didn't even get a chance to mention the Impedance Probe Test which was more conclusive than the PH probe at determining the level of reflux she had. And there were other benefits but I won't go into that again right now.

We were thrilled to be able to tell him, that with the exception of when she's in the car, sleeping, or when I can't get our nurse to follow my instructions, that she is wearing the PMV almost the entire day. He asked about capping and I reported that she has been able to get breaths when the trach is covered, that she has been tolerating a slow trach change much better (best when sitting as opposed to laying flat on her back which is still not so great). He covered her trach to see for himself. She did really well, breathing with the trach covered for half a minute which seems to drag on forever in this situation. So he orders a cap (a cover that fits over the end of the trach).

The purpose of a cap is to cover the trach completely so that no air goes through the trach tube and it is rendered inactive. All breathing then takes place through the nose and mouth just like you or I would. Although the tube is still in the trachea taking up a small amount of space. For Ainsley the plan has always been to go from full time PMV use to capping and then hopefully decannulation (removal of the tracheostomy tube). Our new otolaryngologist agreed with others that due to her airway we probably don't want to try just pulling the tube out and she needs to work up to wearing the cap full time. Like the adjustment to the PMV this is likely to take time. Hopefully less time than the adjustment to a PMV, but probably many months as she gets used to breathing a new way.

We chose to do the scope with the cap on. Not the best combination. Being capped for the first time while a camera is being put down your nose. You can see in the picture how thrilled she is. But I think it gives him a better picture of what her airway would be doing without the trach. We had to remove and replace it once for her to catch her breath. The scope revealed that the airway swelling is a little better. Yet you can see from the picture that it is still swollen. I think because it had gone down some he could see better. He felt that her larynx is a little squished together and that there is some degree of laryngeal stenosis. I think it's still pretty hard to tell since the tissue is swollen. He cautioned us that kids with cerebellum issues can sometimes have sleep apnea even if they do well capped when awake. This means she will probably require the oh-so dreaded sleep study before attempting decannulation.

So where that leaves us now is that the swelling that was assumed to be from reflux, was only partly from reflux. As today marks 3 months since her Nissen surgery and the swelling is not completely gone. Or perhaps it will take longer than 3 months to go away but the more time that passes since the surgery the less hopeful I am that reflux was the answer. Clearly it helped but it was not the magic ticket. I'm still suspicious that the swelling could be from irritation of the area rubbing together since it's so swollen. Not much you can do about that other than wait. The other possibility is that it is from aspiration of saliva. I have noticed that when she's wearing her PMV she drools more. So we have scheduled Botox injections to the salivary glands. This has been successful for some kids on the trach forum. And it's temporary (as opposed to surgical removal that was offered by the Cincinnati team). If it doesn't help then we just won't do it again. He will do that in the operating room under anesthesia at the same time that he does a microscopic laryngoscopy and bronchoscopy, which he agreed to do. Yea!

I'd have loved to have seen that the swelling was gone and her airway looked normal. But realistically I knew that was unlikely. The great news is that we got to bring home a cap, we like our new doctor and we have the MLB and Botox scheduled for 2/26. Not a bad appointment.

Now let the capping fun begin!


  1. Yay for capping! Even though her airway isn't completely "normal" (I hate that word), at least the swelling has gone down a little thanks to the nissen fundo.

    Hang in there and remember not to pull your hair out when you get to the point of having a sleep study done. From what I've read on the trach board, it can be a *tad* unnerving.

  2. Congratulations! A wonderful step in the right direction!

  3. Sounds like it was a great appointment overall. Although, I have to say ... I think the guy is a jerk for questioning your decision to go to Cinci. As a parent, we have the right (and the responsibility) to seek out other opinions and the best care for our kids.

    Good luck with the capping.