Game Changer

We have returned from another trip to Cincinnati.  Rhett did great in the car, and I believe that everyone besides him is sick and tired of “Mickey Mouse Clubhouse.”  You do what you have to do to keep a baby happy in the car for that many hours, and that is what worked for us.  This trip was overall really great and very informative.  We actually learned some new information that will slightly change our plans.

On Wednesday, Rhett had a triple scope done with ENT, Pulmonary, and GI.  The last time he had this scope done was in October when we went for our initial evaluation.  They were doing this scope again to make sure everything looks great so that we can move forward with the big reconstruction surgery.  During this scope, the ENT saw that Rhett currently has ginormous tonsils.  She called them kissing tonsils because they are so big they touch when he breathes.  This changes our plans for next Friday’s surgery.  Instead of having the big airway reconstruction surgery like we have been planning, we are going to do a tonsillectomy instead.  This will push the big reconstruction surgery back for about two months.  We are a little disappointed with this news because that means more surgery for Rhett.  It also means that we will have a little while longer with the trach, but that doesn’t bother us quite so bad.  We have lived with the trach for 18 months, so a few more months is nothing in the grand scheme of things.  Honestly, the trach is a blessing with his tonsils being so big.  It is good that they decided to get super big while he still has the trach, because if he did not have the trach, they would most likely be obstructing his airway.  The trach will also make for an easier recovery after his tonsillectomy since he has a secure airway.  If we did the big reconstruction surgery on Friday, and then 6 months from now his tonsils decided to get really large, we might be in a world of trouble.  We are looking at this as a blessing.  Even though this is not going along with our plans, we know that God’s plans are better.  We will continue to put our faith and trust in Him.  God has carried us through so much already, and He will continue to carry Rhett through all of his upcoming surgeries.  Jeremiah 29:11 says, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”


Everything else looked exactly as the doctor’s expected during his scopes.  GI still looks normal, thank goodness.  We are once again released from GI unless any other problems occur.  Now that we have his vomiting under control, I do not foresee that happening.  While he was under anesthesia for the scopes, the ENT did put ear tubes in his ears.  Rhett had his first ear infection recently around Mother’s Day.  He has been to the doctor several times since then in preparation for the trip, and our doctors at home recommended that he have his ears checked while in Cincinnati.  They checked his ears during the scope and saw that they were bulging with fluid.  Even though he has only had one infection, there was enough fluid in his ears for him to benefit from tubes. 

Since his tonsils are so big right now, we canceled his FEES swallow study.  The tonsils would be in the way of the study, and the doctors would not be able to get an accurate reading of Rhett’s swallow.  Canceling this study was a relief because I was already dreading it so bad.  He will still need to have this study done, but it will be after he has had the tonsillectomy and healed.  I expect that he will have the FEES when we go back for a scope 6-8 weeks after the tonsillectomy, before the big airway reconstruction surgery.

We met with the ear ENT again to discuss options for his left ear.  Rhett has severe-profound hearing loss in that ear, and we are currently not aiding it since we are unsure of how much a hearing aid would actually help.  We are so thankful that he only has mild loss in his right ear because he can actually hear a decent amount even when the aid is not in that ear.  We have decided that we are going to move forward with a Cochlear Implant for the left ear.  The CI may not give actual hearing for that ear, but it would give Rhett some sound awareness in that ear.  The doctor explained that the Cochlear Implant would be beneficial for conversation purposes.  With the CI, Rhett would know if someone is speaking to him on the left side so that he could then turn his right ear toward the person to understand what they are saying.  Having the CI would also help with brain development for the part of the brain.  This would be yet another surgery, but we want to do what is best for Rhett and give him all the options for maximum hearing.  We are not discussing the timeline for this surgery because we want to get through all of his airway surgeries first.  This will be something we would like done before he is 3, so it will be done within the next year and a half.

Rhett also had an eye appointment while we were in Cincinnati.  We found out that he has wonderful vision, thank the Lord.  We already thought that he has really good vision, but it was nice to have a confirmation of that.  We did learn that Rhett has something called Intermittent Exotropia in both of his eyes.  This is when one of his eyes will drift outwards at times, and then other times they are straight.  Right now his is very mild.  When his eyes drift outwards, he corrects it within 5 seconds.  Normally this is something that continues to get worse as the child gets older, and can affect vision.  The doctor said that when the eyes drift outward, Rhett sees double until he corrects it.  That is why it could cause vision problems in the future.  Right now Rhett’s is not bad enough to need intervention.  If it gets to the point that his eyes drift outward more often than they are straight, we will have to do some sort of intervention to help correct it.  Some of the interventions include patching, glasses, or surgery.  We are going to follow up with the eye doctor in a few months, and will continue to monitor his eyes.

We continue to ask for your prayers as we continue this journey with Rhett. Please pray for our family as we leave on Thursday to go back to Cincinnati.  Rhett’s tonsillectomy will be on Friday, and he will need to stay at least one night in the hospital for observation.  We will then stay local in Cincinnati for 10 days because there is a high risk of bleeding after this surgery.  This trip will not be as long as we were planning, but it will still be a pretty long trip.  Pray that Rhett has a successful surgery with no complications during or after surgery.  Pray for the surgeons who are working on our baby.  Pray for our family as we sit in the waiting room while our baby is in the OR, and as we take care of Rhett during his recovery.  Pray that once these tonsils are out of the way, we can move forward with Rhett’s big airway reconstruction surgery.  Pray for us as we are still digesting all of the new information we learned, and preparing for more surgeries in the future.  Thank you again for your continued prayers.  We feel them, and we know God is working for all of our good.



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.

One thought on “Game Changer

  1. So glad you got so much information on this trip..Bless you and your husband..I know it is so difficult to go thru surgery and to know Rhett still needs more..How scary but, I do know that God has you wrapped in his arms and will take GREAT care of your baby..Im praying for you all!

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