Cinci questions

[haikumama]

Hi all,

This is my first real post since my epic intro (sorry!).

We are in the very preliminary stages of speaking with Dr. Cotton's nurse up in Cinci. We're trying to figure out if he will take Ike on as a patient, and when we can get up there for a consultation and bronch.

My first question is: how do you travel? I've looked at the air travel info on tracheostomy.com and it seems daunting to say the least. We live in Austin, so in order to avoid a layover, we will have to drive to Houston to fly out. Has anyone flown out of Houston before? Any tips or tricks for flying with O2 and all of the brazillion bags you need? Driving would take us 17+ hours and that just seems impossible.

My second question is about the possible surgical procedures we're looking at. Has anyone had an LTP done on an infant? Cotton's nurse said it sounds like Ike is too small for the criotracheal resection, but maybe not for the LTP? He is almost 12 pounds and is 8 months old, 5 months adjusted. He is a tiny guy right now.

thanks so much for any insight!
Kari

[saywhatyouwill]

we were told that the main criterium for deciding between LTP and CTR is the extent of the stenosis. the greater the narrowing the more CTR becomes the preferred option. there still seems to be a fair bit of debate about when exactly to go with a CTR. because it's a newer procedure in children there seems to be desire to wait until they are larger (around 22lbs even).

i don't know if this is a helpful thing to say, but life got easier for us once we put the prospect of surgery into a compartment in our minds that would be opened some time in the future. ie it got easier once we accepted that the trach would be here for a while.

then again they can do LTPs on little dudes, so perhaps ike will be decannulated much more quickly.

i know others will have lots more to say about the rest of your questions.

clare.

[LKN]

Cotton did my son's first ltp when he was 8 months old. Traveling is a pain but it is worth that hassle to be a patient at cchmc.

[ColinP]

We live in the Dallas, Fort Worth area. Colin is seen by Dr. Cotton and all the hassle and planning is worth it. Most of the time we do drive. It really is not that bad of a drive Arkansas is the most boring part of the trip. We are due to go in June and I am considering flying since prices have gone down.
Colin had his Single Stage LTP last March. My husband and I lived in Cinci for 3 weeks.
Dr. Cotton and Cincinnati Children's hospital is worth the travel and hassle. If you have any questions feel free to PM me.

[KJKK8437]

Alex's surgeon, Diego Preciado, did an LTP on a 3 month old during our hospital stay. Dr. Preciado did his fellowship with Dr. Cotton. So, it is possible, but I do know that they will only do an LTP on any child if all of the other airway problems are believed to be resolved other than (potentially), a need for oxygen long-term.

We have both flown with a trached child, across the country, and we have driven 16 hours using an overnight hotel stay. (Now, we don't have O2.)

Both are do-able, but if you fly, I would recommend working with a travel agent, even though it might be slightly more expensive (booking fees increase from ... say, Expedia ... but they may find better flights.) That way if something goes wrong, you have someone to call. You also need to get in touch with the medical desk of the airline you are travelling with. At the end of the day, I much preferred the driving. It was less stressful on all of us.