The Rollercoaster

I have titled this post “The Rollercoaster” because that is exactly what this life is like.  There are good days and there are bad (thank goodness our good days are more frequent than our bad days).  It’s a constant up and down with all the highs and lows.  If you read my post from last week, you know that I was having one of those bad days.  I was so disappointed in the results we had gotten from Rhett’s procedure revealing that he will most likely need another surgery.  Followed by that disappointing news, we had another trip to Cincinnati to check on Rhett’s cochlear implant and had some very encouraging news.  I want to take this post to share the good news we received.

This past Monday we drove back to Cincinnati.  Rhett had a follow up appointment with audiology to see how things were going with his cochlear implant.  I have not seen much response from his implanted ear since it has been activated.  I was afraid that this meant that the implant was unsuccessful.  I explained my thoughts to the doctor and told him I thought the sound on the implant was just not loud enough for Rhett to notice a difference. My hopes are that it is going to work, it’s just not set to where Rhett needs it yet.  We did some booth testing which is where the audiologist plays different volumes and pitches of sounds in a room.  We had his right ear plugged, and played all the sounds on the left side of the room.  Rhett is familiar with this type of test from his hearing aid, so that made things go pretty smoothly.  Rhett was responding to different sounds.  You could tell he could hear different things by his facial expressions and by the way he would pause what he was doing when different sounds were played.  When sounds are played on the left, Rhett is supposed to look to his left and is rewarded by a little light up toy in the corner.  Instead of looking to the left, Rhett continued to look to his right.  I am thinking that he was hearing the sound with his left ear, but looked the wrong direction because he is so used to looking to the right from the hearing aid testing.  After the booth test, the doctor agreed with my thoughts that the implant was not yet loud enough to meet his needs.  

The audiologist made some changes to the processor, and set up four more programs that we are going to work through over the next few weeks.  Hopefully, as we move through these programs, we will see response from his implanted ear more and more with our day to day life.  The doctor also connected his implant to the computer to see if he could get a reading on his responses.  The computer showed that there are some definite responses, so that is very encouraging news.  The audiologist explained that he already has a baseline for hearing because he has been hearing from his right ear, and the implanted ear is not going to sound the same.  We may not be noticing responses yet because he is still learning what things sound like from his implant.  As time goes on and Rhett uses the implant more and more, his brain will begin to basically retrain itself to hear what sounds are supposed to sound like for that ear.  The good thing is that Rhett tolerates the implant very well, and is wearing it during all hours that he is awake.  My hope is that as time goes on, his response and communication with continue to improve.

Rhett also had a clinic appointment with his nurse practitioner in ENT to check on how things are going with his trach.  We wanted to test his pressures with the non modified Passy Muir Valve.  He is currently wearing a PMV with one drill hole in it to relieve some pressure, and that is still what he currently needs.  As his airway gets stronger, the goal is for him to be able to wear the non modified PMV so that he can move towards getting his trach out without needing surgery.  They like for the pressures to stay between 6-8, and Rhett’s pressures tested between 15-20.  That is a lot of improvement from July when his pressures tested at 40.  So even though he is not quite ready for the next step, we are seeing some improvement, which is always so encouraging.  We see our local ENT at Brenner’s in December, and we plan to have his pressures rechecked then.  Hopefully we will continue to see improvement as he grows.

We are so thankful for everyone that has prayed for us and with us through both the hard times and good.  God is definitely working in Rhett’s life every single day as we watch him grow and improve.  Please pray that Rhett will soon show some response from his implanted ear.  We will go back to Cincinnati at the end of November to do some more testing with his implanted ear.  Pray that as we go through this next set of programs, we will find where Rhett needs his implant to be set.  Also pray that Rhett continues to grow and his airway continues to get stronger so that he can soon get his trach removed, hopefully without needing surgery.  Also pray for us as we go through the month of November.  He has a lot of things going on as we move forward with him starting preschool in January.  Again we thank you and we love you for following us on our roller coaster of a journey.


Published by mommyinchargeblog

Hi, I am Anna Martin, and I am a Wellness Coach to mommas of children with disabilities. I help these women find the freedom to live their life in a way that their circumstances do not determine their happiness. I am also navigating my own journey in parenting a medically complex child, and I have the blessing of raising 2 of the sweetest boys in the world. I am here to empower women to be in charge of their life, despite their circumstances.

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