Our trip to Cincinnati

I am quite tired from the last couple of days, so please bare with me and give me some extra grace.  I wanted to start writing though to let you all know about the medical side of the trip and what we

learned.  The hospital was top notch and took very good care of both us throughout the whole trip from the pre-planning process to getting us to the airport today.  The doctor was phenomenal.  From all of the wonderful specialists and doctors Thomas has seen since birth, I can honestly say we have never had such an experience as this.

The short story:  The doctor agreed that we have done everything he would have done with one exception that we discussed in detail.  We were able to go over the history and management of his ears.  He suggested further test at a later date and changing the long term plan in hopes that in the future this will no longer be an issue for Thomas.

The long story:  The doctor had no clinicals that day and had only come to the hospital to see Thomas.  He was honestly excited and intrigued as to what he would see and learn from him.  Thomas was initially very anxious because the room we were placed in had this in it:

This is the infamous microscope that ENT's use.  At our regular ENT this is a separate room and he has been condition that only bad things, that hurt, happen in this room.  However, we quickly learned from our Dr. that this wasn't just a microscope but a video camera.  He first examined Thomas' bunny with it, showing him how it looked in his ear and showed it up on the two big television screens in the room.  After bunny was done it was Thomas's turn and he happily jumped up on the table for him.

I am telling you this doctor was patient and amazing!!

Thomas's appointment went very well.  It was the first time I was really able to see what his ears looked like on the inside.  He has large blue, U tubes in his ears and you can see them in his ear drums.  He also has scarring on both ear drums but the doctor assured me that it was normal from the previous surgeries and not bad considering he has his third set up tubes.  He did note that the left ear had some granulated tissue that comes from behind the ear drum up and over and has attached the ear drum.  He said this may be effecting his hearing as well as the position of this tube.  He stated that the U-tube is much larger than a standard short term tube and that in Thomas's little ears it would be difficult to get them in a good position and keep them that way.  While he understood our ENTs reasoning for using these tubes in an effort to have less surgery and keep them in for three years, he said he probably would not have gone that route himself.  Just because Thomas is small and being with the complex syndromes he is not going to grow at the same rate as a normal child.  Therefore, the smaller tubes while short lasting would be less bothersome to Thomas and would be small and comfortable in his ears.  

He flipped through the medical records and information I brought him and we discussed the history

in detail on his ears and my concerns.  He agreed with all of my concerns and reassured me that I have indeed done my best with his care and he would not have changed the route I had chosen.  He then told me that it crossed him mind to do a cat scan to check the formation of his ears as there is a greater chance that something internal did not form properly when he was created causing these issues.  Especially given the amount of things in Thomas that did not form properly including the nerves in his eyes and especially his bone structure.  Having said that though, he didn't feel it was necessary to put him through that today as he would have to be sedated.  He did suggest that in the future when he needs another surgery or test done to push for a scan.  He also said that the main reason he kept discounting it is that the scan wouldn't change his management plan at this time.  He also said Thomas would benefit from getting that ear cleaned, but there again that is quite evasive and would require him to be sedated.  The doctor was impressed with Thomas's speaking and articulation of words and stated that he has compensated well.  He even asked if I have had his IQ tested?

It was most reassuring when we discussed syndromes and he made it feel like he had heard the terms as often as you have heard about the flu.  (Duane syndrome, Klippel-Feil, Wildervanck, and Townes-Brock)  He did agree with me to disagree with the genetics findings of Townes-Brock as he may look like it genetically he does not look like a typical person with Townes-Brock.  It was amazing to be at such ease with someone who wasn't questioning what he had but discussing the effects of it and how Thomas is compensating.

Where to go from here?  Dr. Choo suggest that I keep track of the drainage, infections and just overall discomfort that Thomas experiences.  He really didn't want to do more than necessary and let Thomas's ear do what it is naturally designed to do.  That may mean that his hearing is not perfect, but he can compensate.  The hope is, as in all children, that his immune system will mature and he will grow taller allowing the ear canal to descend and thus growing out of these issues.  There is always that chance that there is an inner problem we aren't aware of but for the time being this method is working nonetheless.  The bad news, we may just have to get new tubes every year until those things happen.  I was prepared for that information though and feel more confident that if that is the necessary plan that we must follow, we will.

I cannot say enough to each and every person who has prayed, supported us, and has just been there for us either in person, through facebook, the blog, text messages, etc.  Our pastor prayed over Thomas and I before we left on Tuesday and while I was quite anxious just traveling with a four year old it was all for not.  Everything went as smoothly as it possibly could and then some.  Again, every person in our path was absolutely amazing.  God has a perfect and beautiful plan for Thomas and he wanted this trip to happen for us and it did.  We may be back to Cincinnati in the future, but for right now I am so happy to be home with my boys.

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9