We got there- no problems. We heard that there was some sort of a septa strike, but we didn't have any traffic issues at all. This was the first time we were seeing the ENT since the trach was removed in May.
When the trach came out in May, he wasn't speaking and we followed up with her a few weeks later. At that appointment all was well and she told us that the hole (stoma) would be open and just to keep it clean and covered with a band-aid and he should be making some sounds soon. We had to make an appointment to follow up with her and voicing concerns in a few months time. That 'few months time' was yesterday.
So she looked at the stoma, and said that although the hole was still open (after 5 months), she would not close it up until after the winter. Adam still blows air through it and has mucous coming through, too. She said that was not a problem and we shouldn't worry about it. She listened to his voice and he was able to say a few words (hi, bye, mama, dada, Maaaa (for Matt)) and he made the vowel sounds as well as a few animal noises for her (moo, woof, roar). He demonstrated no problems with receptive language and she did not feel the need to test his hearing. He used a few signs spontaneously and we were communicating with some pecs, too.
She was impressed and said how far he has come and that he did not need the voicing clinic (other than this intake day). His voice was not raspy at all and was a 'normal' baby voice. His breath patterns were fine when he was vocalizing. We just have to continue with speech therapy and get him to talk.
It was a good visit and we go back to her in 6 more months.
She is one of the best doctors we have. Several times, Phil and I have ranked Adam's doctors and we totally have our favorites. What makes her exceptional is that she explains everything. She doesn't talk down to us. She smiles and laughs and has a personality. She also really knows her stuff. After we were told by a few doctors in our area that Adam was simply too small to have his trach removed and no one would touch his airway to try to remove anything until he was 2, we went to Chop for yet a third opinion. If they would have told us that he was too small and had too small of an airway, then we would have gone to Cincinnati.
We went to the airway clinic at Chop and they reviewed Adam's files, charts, pictures, tests etc. (what a process that was getting everything there!) She said that she felt that she could fix it. She took time out to explain the several options that we had. She was going to go into his airway and remove a cyst, seal it on up and all would be fine. If he still had too narrow of an airway after removing the cyst then we would schedule another surgery where she would take his rib and reconstruct his airway.
When she went in the first time to remove a cyst, she found that she could not. He left surgery with no changes. She came out to talk to us and we had to go into another private room. At this time I started crying. I knew it wasn't good news. She was honest. She showed us pictures and explained what she found in Adam's airway. She said "I've seen thousands of abnormal airways and I've never seen this." I was crying in the corner unable to ask questions, but she knew what I would have asked if I could speak. She knew what I would ask the next day. We asked her about other doctors in Cincinnati who we researched- a Dr. Cotton. Could he help? She said that she knew him and would be consulting with him. She was confident that after several surgeries, she would be able to clean up the airway. She explained that she still might have to rebuild it, but we would start in a few months.
We did. We first went to Chop in June of 2008 for our first consult. She performed three surgeries and she removed all the cysts in his airway. He did not need reconstruction. His trach was removed by her in May 2009. If I won millions in the lottery, I would totally set up a research foundation and anything that doctor wanted to study, research or cure-anything ever involving trachs and children, we would fund. She always is number one.
Sounds like it was a good, reassuring visit. It also sounds like you hit the jackpot with your doctor. I love that you sought out a second and third opinion and weren't going to stop until you had the right opinion!
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