FEES, PH-Probe, Scope... Then what?

bcaskey · #1 07-21-2010, 10:41 AM

Hi guys! We are on the verge of celebrating Hudson's 1st birthday! I can't believe it! We are also on the verge of another trip to Cincy for a FEES, PH-probe, and scope. Supposedly, the results of those procedures will tell us what our next steps are for reconstruction. Can you all tell me what that timeline looks like? Do they typically like to do the surgery shortly thereafter? Help me understand!

tbhartman · #2 07-21-2010, 10:48 AM

You should just shoot them an email and ask! I don't think we have the same primary ENT (we have Dr. Elluru) but lots of them seem easily accessible over email!

LKN · #3 07-21-2010, 10:51 AM

It will take them a couple of weeks to get the results together. You will get some results right away, but it is best if they can look at all the tests and come up with a plan.

A lot depends on what they find out. If there are issues, then those will need to be addressed and resolved before reconstruction can move forward. If there are no issues then they will most likely proceed to scheduling reconstruction.

In our case, the FEES and the impedence probes were normal each time we did them. The bronchs continued to show swelling so we had to wait. We first went to CCHMC when Nathan was 6 months old and he was finally decannulated at 3 1/2 years old. There is no set timeline. Each kid is different, each airway is different...

Patience, patience, patience is my best advice!

bcaskey · #4 07-21-2010, 10:57 AM

Ok. Patience is a problem for me!

Kate · #5 07-21-2010, 10:30 PM

Quote:

Originally Posted by LKN

Patience, patience, patience is my best advice!

I agree! I'm thinking for us-FEES, probe, bronch and now surgery Monday-probably 4 months. But we did 2 ph probes, tonsils out, FEES and then a swallow study....everyone is different. Patience and don't catch yourself looking to far ahead or it'll feel like forever. It's a long road.

haikumama · #6 07-21-2010, 11:19 PM

You guys are exactly where we were last year! Last year we were in Cincy during the first week of August for a chest CT, FEES, scope, impedance probe, and I think an upper GI.

After the chest CT - that afternoon - we had a consult with pulmonary, GI and ENT to go over the CT results and to talk about what would happen during the scope. Then the next day, after the scope, we crammed ourselves into a tiny room with ENT, GI, Pulmo, nurses, etc. to talk about what the docs saw.

Then, several weeks later (like mid-September) we got a typed up report of everything that was seen during the visit, and what the recommendations were. For us, they wanted Ike to be bigger and they wanted to watch him to make sure he wasn't microaspirating and causing damage to his lungs.

We originally planned to go back to Cincy last March (they said come back in 6 months, but we wanted to wait until after flu season). But then March arrived and Ike was still so small they didn't feel we would learn anything significantly new and we had to wait a few months. Then he was sick and the visit was pushed back again.

Patience is not a virtue of mine, but throughout this process, I'm slowly learning... (maybe)

Good luck to you guys! It's such a busy, whirlwind visit. So much info is flying at you at all times. Bring a lot of pens and notebooks!

Kari