Cincinnati Update

[kjersta81]

I have been meaning to post an update but this last week has been a bit hectic..Anyways, we were in Cincinnati last week for a second opionion with Dr. Rutter, Boesch and Putnam. I was very happy with the doctors and overall experience there. They definitely know what they are doing.

Dr. Rutter confirmed Hunter's subglottic stenosis but he did not see any webbing as we we told he had by our previous ENT and no signs of tracheolmalacia. He had impedence probe placed, we are still waiting for the results on that however, GI said everything looks good from what he could see. Pulm said his lungs looked great.

At this time Dr. Rutter is recommending we go ahead and schedule a single stage LTP rib graft. He said he does have the ability to change that to double stage last minute though. So we are planning on going ahead with scheduling surgery sometime in June give or take a few weeks. So we'll be there for 3-4 weeks approx.

I couldn't be happier we went there. I think if we would have continued seeing our current ENT, she would have just kept playing the "let's wait and see" game. Dr. Rutter said with the severity of Hunter's stenosis it's unlikely he'll grow out of it.

Now I am terrified of such a big surgery but it something that has to be done. It's for the best. Thanks for listening!

[tbhartman]

Glad to hear it! Be sure to figure out the Cincy Ronald McDonald House if you'll be there that long!

[Linnae's Mom]

We love Dr. Rutter! So glad you could get to Cincy.

[suzanne2545]

Glad you went and feel confident in your plan! Dr. Rutter is not our doctor but we've interacted with him many times and he was in the OR one time after a major LTP setback and we really, really like him.

If you want to read our single stage LTP journal you can see it in my info below. Always happy to answer any questions!

[kjersta81]

Originally Posted by suzanne2545

Glad you went and feel confident in your plan! Dr. Rutter is not our doctor but we've interacted with him many times and he was in the OR one time after a major LTP setback and we really, really like him.

If you want to read our single stage LTP journal you can see it in my info below. Always happy to answer any questions!

I actually found your blog from a previous post about LTP stuff...Thank you for writing about Parker's LTP. It's a wonderful tool for those about to go through it and to have an idea of what it might be like...

[principe]

Yes, sounds right what the doctors told you at Cincinnati. Not sure if you remember Hunter's case is very similar to Aldo's. Although it looks like Hunter has no webbing, which is great news. Aldo was borned with a web and subglottic stenosis grade 3. He was borned on 10/10/10, & on 10/29/10 had single stage LTP with cartilage graft. His surgeon Dr. Holinger at Children's Memorial Hospital did say Aldo did need the surgery done. That there was no other way. That the larynx had to be open up with reconstruction. I guess they don't outgrow subglottic stenosis grade 3. It makes sense now. Is too much stenosis to just go away. It probably grows with the rest of the larynx if not operated on. So the surgery was done 3 weeks after birth. Dr. Holinger was confident that Aldo wasn't going to need a trach with the surgery, and yes, the surgery was a success; no more webbing and the subglottic stenosis is gone but Aldo became so so swollen down the larynx that the trach had to be performed. But I'm extremely happy with Dr. Holinger. He definitely knew about such cases and went the right route with Aldo. He's a very good surgeon and very respected by the medical staff and patients around the world.

I'm so glad you went for that second opinion. I wish all the best to Hunter.

[haltec]

It was great to meet you and Jeremy and little Hunter. Please let me know when you schedule surgery and we can get together again.