decanulation update

[trach mom]

Hi everyone. We are back from Birmingham and they did not take the trach out. Her hemangioma has grown back. She had 3. One on the outside of her neck, one inside her trach and one in the inside of the neck in between the two. Dr Wooley had done an LTP in the area of the hemangioma in her trachea. Well, when he did the bronch today her airway was 100% closed!! It was so surprising. She has been making such good noises lately. Well to make a long story short, the hemangioma in her neck has grown into her trachea and her esophagus (sp?). He was very surprised that she was not having problems eating. The only thing I can think of is that the tumor is such soft tissue that it is easy for the food to pass past it. There is nothing they can do for her right now because it is so large and where it is at in the neck, it cannot be removed. They are just going to let it go away on its own, which usually happens when they are about 3 years old although rarely they do not go away on their own. We are talking maybe steroids, but we don't know yet. He is going to consult with Dr Cotton, a hemangioma doctor in ARK (who I saw on TLC) and some doctors at Harvard that specialize in hemangiomas. I am so upset right now but I am very proud of myself because I have not cried yet.
Kim

[Lily's Mom]

Hi Kim,
I'm so sorry to hear that things didn't go as planned this week; it sounds like you found out just exactly the opposite of what you expected, how frustrating! I'm just glad Kyrsten is okay and that you have some options for dealing with the hemangiomas. Good luck with everything! I know how disappointed you must feel. Lily got decannulated in March and had to have her trach put back in after 4 days. I'm still sad about it. Oh well, it will be our turn someday, just not now I guess. Hope you get some better answers soon!
Erica (Lily's Mom)

[trach mom]

Melinda,
That first sentence sums it up for me, but I never have known how to put it into words.
Stephanie,
Dr Wooley said Dr Cotton just sends his patients back to him for the surgery when he sends them up there for an opinion, but I am trying to convince my husband it is worth the trip just in case the doctor is wrong. When I mentioned going to Cincinnatti, (probably 13 or so hours) Dr Wooley's exact words where "I can tell you it is not worth the trip, because he will send you right back here for surgery". But I thought they said there was nothing they could do. I am so confused
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[trach mom]

Erica, I was thinking about you when I was driving back, I told my husband it was good that we postponed the bronch six weeks ago, because there is a good chance the hemangioma had not grown back yet and they would have took the trach out, and then it would have grown back, having to put the trach back in. I told him how dissapointed you were when they put it back in.