Hi all,
Well, we are back. What an adventure…..
The plane ride there started out rough with crying, but Carter fell asleep and the ride was fine. We found the hotel, that was connected to the clinic, so that made things very easy. Carter slept great the first night and took a nap for me the next day, so that was all fine. Our appointment was at 3 pm on Wednesday and the doctor had cleared the entire rest of the day of his schedule for us. We were there until 7:30 pm. Yes, 4 and a half hours this doctor spent with us! I have never in my life met a doctor who was so smart AND so nice at the same time. He went through Carter’s history with me and did an extensive exam. He has a couple of ideas of syndromes that it might be, but is not sure yet. He ordered some blood work and said we would keep in touch on the phone so I would not have to go back. At least not for a while.
I was feeling pretty good about everything and we had changed our flight to Thursday (originally Friday because he didn’t know if he wanted to admit him) and we were going home the next day.
Thursday morning, approx. 4:30, Carter started the not breathing well thing and I called our ENT at home. He heard Carter over the phone and said “Call 911”. We were off to the ER. Carter’s sats were fine, but he couldn’t breath without making these horrible noises much like croup. They did an xray of Carters airway and he should have a 10 mm opening and he had 1. His airway was 90% blocked. They wanted to admit Carter, but I explained that we had been through this before, that they just needed to give him steroids and reduce the inflamation to get him breathing better, etc, etc… That he already had a compromised airway from the tracheal rings, etc. Finally, I got my doctor at home on the phone with them and they understood that this is some of why we were out there to begin with and because the flight was only an hour, they agreed to give him the steriods and let me go.
The doctor we had seen the day before called me to wish us a good flight home and could not believe what had happened. He said that he would help me, etc. and was just so nice. I was so tired and worn down that I broke down crying. He felt so bad for us and just assured me that we were a team and we were going to figure things out.
Now, we got home late Thursday (had to change the flight again) and would you believe that on Saturday morning, he called to check on us again!? He is the best doctor I have ever met! He is reacting with the same concern I have and is working hard to help us. There really are some Great doctors out there! Carter is almost back to normal, and we have an appointment with the Pedi today just to check him again. The ER also called us to check on Carter. If we didn’t feel so at home here, I would consider moving to Ohio!!!
Anyway ladies, no real answers yet, but definitely feel like I have the right guy in my corner now!
HOpe all of you are well!
Ann Marie
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it’s rather embarassing!
