More Pieces to Rhett’s Puzzle

We are back home from Cincinnati, and we are all trying to get caught up on rest.  We had a busy and exhausting week, but we have left with more pieces to the puzzle of Rhett.  Having a medically complex child is like a puzzle in the fact that you are constantly having to piece together different information while trying to figure out why certain things are happening.  We left Cincinnati with more knowledge and somewhat of a plan for Rhett.  He is such a tough little guy, and handles all appointments so well.  He has gotten so used to the routine, and will even initiate doing vitals these days.  As always, we received a mixture of news.  Some of the news we received was encouraging, and other news was disappointing, although not surprising.  Rhett continues to beat the odds, so even while we were disappointed with some of the news we received, I know Rhett will rise above the challenges.

I will begin by sharing our encouraging news.  On Thursday Rhett had surgery to remove his lingual tonsils along with a scope of his airway and an ABR (hearing test).  The tonsillectomy went smoothly, and he is continuing to heal from the surgery.  He has been in some pain off and on, but his resilience is truly amazing.  While he was under anesthesia, the ENT did a scope to see how the rest of his airway looked.  She cut out some granuloma (extra tissue) that was right above the trach tube and obstructing his airway.  After cutting the granuloma out, she was pleased with the size of his airway.  The plan is to go back for more scopes in 3 months to check on how Rhett healed from his surgery, and to take another look at his airway.  If all looks good, the plan will be to put in a smaller trach and begin capping trials.  Capping means that we will put a piece over the trach to keep him from breathing through the trach so that he will only use his upper airway.  Rhett will be kept in the hospital for 2 nights so that the doctors can keep a close watch on him as he begins these capping trials.  If Rhett does well with capping in the hospital, then we will go home with a cap.  We will then build up the time during the day that he wears the cap until he is able to wear the cap for all waking hours.  This will be a huge step in the right direction to get the trach out.  What is even more exciting is that we are going to try this before planning a reconstruction surgery.  Please pray that this is the direction that Rhett will be able to go in.  I would love for him to not have the reconstruction surgery since that surgery is a pretty major and invasive surgery.  We are super excited over this news, but we are trying to not get our hopes up since we never know what Rhett will decide to do.  He is the one in CHARGE and we are just along for the ride.

I would like to take some time to remind you about Rhett’s ears and his hearing.  From birth, his left ear has always tested in the severe/profound loss range which means he is pretty much deaf in that ear.  That is the ear that we implanted with a cochlear implant last September in hopes that we can get sound awareness in that ear.  His anatomy in that ear is so different that we went into that surgery knowing he would likely not get any speech sounds, but wanted to implant anyways in hopes that he would get sound awareness for safety reasons.  Basically we implanted that ear so that he would be able to hear traffic sounds or even hear someone speaking on that side of him so that he would know to turn his right ear towards the sound for better hearing.  While in Cincinnati we did some hearing testing in the booth with both devices in.  Rhett responded 10 levels better with both devices in than he did with just the hearing aid alone.  That news was very exciting because in everyday life I have not been able to tell a huge difference as to whether or not he is getting any sound to that ear.  So this testing confirms that Rhett is getting some input to his left ear, which is super exciting, although he still probably does not hear that well in that ear. 

The information we received about Rhett’s right ear was a little disappointing.  The right ear has always been his good ear, and he could hear at a normal level with his aid in.  Over the last year, the hearing on his right side has decreased.  When we did the sedated hearing test in March we learned that his right ear had gone from a mild/moderate level of loss to a moderate/severe level of loss.  That was a significant decrease.  While doing booth testing in Cincinnati, we were getting his level of hearing at a moderate level of loss with both devices in.  We did not test his hearing unaided, but these results indicated that his hearing would be worse than it was in March.  Our findings were confirmed when we did the ABR test under anesthesia during his surgery.  His hearing has now decreased to a severe/profound level of loss, which means he is basically deaf in that ear as well.  Even with his hearing aid in, he is not hearing that well.  We have since turned his hearing aid up, but it was explained that even though we are making the aid louder, it’s probably not any clearer.  At this time Rhett may be able to hear sounds, but I am not sure of how much speech he is actually able to hear.  With all of that being said, we are most likely going to do a cochlear implant on his right ear.  Since the anatomy in his right ear is more typical, we are predicting we will get a more typical response to the implant.  Once that ear is implanted, he should have access to speech sounds on that side.  We are doing therapy that teaches Rhett to recognize and respond to sound, but I still do not know how he will ultimately choose to communicate.  I am not giving up on hopes he will one day use speech as his mode of communication, but at this time I am really going to focus on using sign for him to communicate. 

I know this update has a lot of information.  If you took the time to read and understand all of this, I would like to thank you.  We had other appointments the week in Cincinnati, and those all went well.  We have a plan with what our next steps are for Rhett moving forward, but we still do not have an exact timeline.  I would like for him to have the CI surgery first, if that is what we choose to do, before working on his airway.  The sooner we get his implant in and activated, the more beneficial it will be for Rhett.  Once that is done, I think we will be able to work on downsizing the trach and capping it in hopes that he will soon not need it any longer.  Once I have more details on exact dates, I will share with you all.  For now, please pray that we can get things scheduled sooner rather than later.  I am praying we can get his implant scheduled in the next month or two, and then we can have his next round of scopes scheduled in about 3 months from now.  I would like for you to also be praying for Rhett’s airway and that he will be able to tolerate capping his trach without another major surgery.  I know this was a lot of information, so thank you to all who continues to stay up to date with all that goes on with Rhett.  We are so lucky to have such a strong support system, and family and friends praying with us through this journey.

Rhett LOVES Ronald McDonald, and we LOVE the Ronald McDonald House.

Before surgery

Right after waking up from anesthesia.

A few hours after surgery and he is already smiling.

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