12/10 – Home from Cincinnati with a big plan ahead

After spending 5 nights in Cincinnati, an entire battery of intake and processing at a new hospital, and undergoing various scans, scopes, test, procedures, and meeting with an amazing new team of doctors, we have complete confidence in our new airway team, and a renewed hope for big changes in the Spring.

We’ve been home for just under a week now, and we needed most of it to recover from an awesome and successful but incredibly exhausting trip. The children’s hospital in Cincinnati was an amazing place, and the aero-digestive team of pulmonologists, ENT, and gastroenterology doctors are absolutely leaders in their fields. They truly inspired us with a new level of confidence and information, and we have full faith that this team will lead Judah to better health and finally getting that trach out.

Judah will need another surgery (in Cincinnati they call it an LTP or laryngotracheoplasty – basically the same as the LTR or laryngotracheal reconstruction he had in May of 2014)  in the spring, but hopefully, that will mean BYE BYE Trach forever! But, as always, it’s a wait-and-see situation until the end of flu season. No dates, no details, but a pretty straightforward outcome from the best team in the US – Judah may be one of the easier cases they’ve seen, which is good news for us. 

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That said, Judah is the most amazing champion we’ve ever known in real life. Even after a week of prodding, poking, allergic reactions, early mornings and long drives, he has been running joyous circles around us, using his voice and begging to go for a DRIVE! We needed to sleep for a week but this kid is unstoppable.

Thank you all for your good thoughts and prayers – it’s working! The greatest news is that many of Judah’s systems are working very well and he’s quite possibly the healthiest he’s ever been in his big/little life! So many doctors and nurses are ASTOUNDED by how WELL he is, given everything he has been through. We know for sure that all the good vibes from all over the world have more than a little to do with that.

As more details arise and we know when the surgery will be and what to expect, we will be sure to share all the info. For now we will continue to push forward and await the next steps in Cincinnati, while doing our best to stay happy and healthy at home through the winter.

All our love,
J-N-J

8 thoughts on “12/10 – Home from Cincinnati with a big plan ahead

  1. Wooooo– this is such wonderful news!!! Sounds like you have found *just* exactly the right team of doctors for your family!!!! AND wonderful to hear that Judah is doing so incredibly *well* through all of this!!! Keeping all of you in *prayer*, for a healthy winter, far from anyone who’s sick ;-).

    And LOVE to hear about Judah ‘finding his voice’ ;-).

    Love all of you!!!
    Susan

  2. Judah has so many people thinking about him and pulling for him, but the real heroes are you – his incredible parents. Love to you all.

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