On September 21st Amanda, Taevin and I left for Columbus Ohio for the Nationwide Children's Hospital 22Q and You conference which was held the next day.
(A little side note: Taevin has something called 22Q 11.2 Deletion Syndrome. He is missing part of his 22nd chromosome. This syndrome is also called DiGeorge Syndrome, VCFS, Catch 22 and a few other names. I will be calling it 22Q for most of my posts.)
So after about a 7 hours drive we arrived in time to have dinner with a group of other 22Q families who were also attending the conference. They are an amazing group and I am so luck to have come across their support group on Facebook. We were a bit late but here is a picture of some of the ladies and their cute kiddos.
The next morning I got up early and headed to the conference while Amanda and Taevin hung out at the hotel. They got in a lot of TV watching and book reading while I learned so much wonderful information about this syndrome and how to help Taevin. Here is a picture of a few of us during lunch at the conference. Some super amazing ladies right there.
After the conference and a good nights sleep we packed up and drove the 2 hours to Cincinnati for Taevin's week long appointments with the doctors at the airway clinic. This visit was to get a second opinion on his airway and breathing issues that he has been dealing with.
After we arrived, with time to spare before we could check into our hotel, we drove around the town and stumbled upon Oktoberfest. We spend a good 3 hours walking up and down the street looking at all the booths and enjoying some really yummy funnel cake. Then it was off the the hotel for some much needed rest before our long week of appointments.
Cincinnati Children's Hospital has an awesome
Aerodigestive Clinic that evaluate children with breathing, sleep, eating, Gi issues to see what can be done to help them. During this evaul you meet with a team of doctors that go over and test each of your child's issues to find out the best course of action for them. We saw them because we were told that Taevin has a narrowed airway and would need reconstructive surgery to repair it. We were told by his ENT in Chicago, since birth, that he has sub glottic stenosis, a laryngopharyngeal cleft and glottic webbing. The findings for each of these have never been consistent and the breathing issues caused us to seeking a second opinion before we agree to the surgery.
The first day Taevin has 2 appointments, they were very spaced out and made it so we had to spend the whole day at the hospital. It was a very long day with nothing for a 2 year old to do. You would think being a children's hospital they would have some toys or a play area but sadly no. We were lucky enough to find a swing set just down the road and took advantage of it while waiting for our second appointment.
The results from day one were:
* They saw little to no movement of his vocal cords and saw that he was using his epiglottis to compensate. He did end up pulling the scope out before they got a really good look though. Little stinker!
* He was in good health and cleared for sedation tests.
That night at the hotel while watching TV he plopped himself down between Amanda's legs and stayed there for a while. It was really funny.
Day 2 we saw the Pulmonologist and GI. He also had a swallow study and a CT. It was another long day which we spent the majority of the day at the hospital. That evening we took a little walk and found a park not far from the hotel. After a a few trips down the slide and a walk down the town square we had a quick bite to eat and then headed back for a good nights sleep.
Day 2 test results:
* The doctors got a medical history and did an exam.
*Showed no signs of aspiration and can now start to be weened from his thickener. Yippie!
Taevin at the park
Day 3 and 4 run together. We had to be at the hospital really early for his tests. They took him back sedated him, drew blood, (after about 6 sticks and the use of an ultra sound) preformed the scope, bronchoscope and inserted the PH probe for his 23 hour reflux test. After he wake up they did another scope to look at his vocal cords. He was then admitted for the night.
Test results day 3:
* Little to no narrowing of the airway.
* Small, unimpressive laryngopharyngeal cleft.
* Glottic webbing but not concerned about it.
* Movement but not full closure of vocal cords.
* Blood work all normal.
* Lining of stomach normal.
* Lungs clear and normal.
* Minor bronchomalacia
*Aorta pressing on esophagus but not causing harm.
What do you do in the hospital if your baby isn't sick but has to be there? You walk the halls over and over and over. Eat and then walk the halls again. This little boy did not want to sit still! Finally after the 23 hours and a rough nights sleep we were discharged.
Day 4: The doctors came to the conclusion that it was most likely his heart that was causing all the problems and suggested we see our Cardiologist. We told them that we had already and was told it was not his heart. They then suggested we see one of their cardiologist for a second opinion. We were planning to go home that day and were told they had no open appointments so we headed back to the hotel packed up and started home. We didn't get far when the call came. They had a cardio who was able to see us the next day, so we turned around and checked back in to the hotel.
Day 5 we woke up early and headed to the hospital for the cardio appointment. After reviewing the report from our Cardio in Chicago he told us the agreed with them. Other then listening to his heart the only other thing they did was a EKG which looked good. So with no answer we were sent on our way.
Waiting at the Cardiologist's office.
Back at the hotel we packed up once again and headed home. It was a long trip with mixed results. We got good results about his airway and were happy to find that he would not be needing the surgery to fix it, but other then that we were left with a lot of unanswered questions.
