Cincinnati Update #4

Here's an update Shelly wrote for Josiah's Caring Bridge website late today. If you haven't visited the site, check it out at
www.caringbridge.org/visit/josiahsnead
It's got lots of great pictures (including some from our Cincinnati trip) as well as a place you can write Josiah messages!

Here's Shelly's update from today...it has some GREAT NEWS in it:

WOW! What a whirlwind this week has been! We flew in on Sunday, and drove to West Chester to stay with our wonderful new friends, Rick and Sharon Schatz, who hosted us (and all of Josiah's equipment!) for our stay here. Thank you thank you thank you! (and thanks, Scooter, for the connection).

Monday was a pretty easy day - we spent the morning at a place called "EnterTRAINment", an enormous hit with our train enthusiast. Then off to the hospital to meet with anesthesia to get ready for Wed's procedure. This took a while, but we made it to the zoo for a short time and Josiah had a great time! Then it was off to dinner and back to the Schatz home for bed.

Tuesday was a rough, long day, but a very informative and hope-giving one. We arrived at the hospital at 9:30, Josiah was given anesthesia (which made him VERY upset, since he didn't need it for his last scan). At 10:30 he had a hi-resolution chest scan. After lunch at the cafeteria here, we headed up to see the ENT/speech pathologists at the voice clinic. Josiah was fussy and freaked out most of the time there (a very uncomfortable procedure for him - probe placed through his nose to get a good look at his vocal cords while breathing and talking). He also did some speech testing with a microphone/computer that we've never had done before. Results of the tests showed that, indeed, his vocal cords were not really moving, but we found out for the first time that this was not "the end of the world", as it is treatable with surgery/therapy. However, Josiah may have voice issues (a light, breathy voice) as a result, and we'll do some voice therapy via skype and other in-home therapies to work on this, even before the surgery. Then we saw the pulmonologist, who gave us a LOT of valuable information that I won't burden you with here, but suffice it to say, we were very hopeful going into Wednesday morning's bronch. Finally, we saw the Gastrointerologist, who basically said he didn't think Josiah was refluxing...the shortest appointment of the week so far! When we were FINALLY done (around 5:45pm!), we headed to the Great American Ball Park for a Cincinnati Reds game, which daddy splurged and got us 7th row tickets to (...which happened to be a few rows over and up from Pete Rose, who was also at the game..).

Wednesday, the day we had been anxiously waiting for! Finally it was time for the triple procedure - bronchoscopy, laryngoscopy, endoscopy, and maybe a few other oscopies, I lost count! They also inserted an impedence probe through Josiah's nose all the way down to his tummy and left it in (will be taken out after 24 hours, tomorrow morning) to accurately measure reflux posssibilities. Josiah was pretty fussy (as he went to bed pretty late and got up pretty early....and was very tired of procedures at this point), but finally after an 8:00 arrival time, he was put "out" of his misery at 10:00 and taken to the OR where 4 doctors "did their thang". (sorry, I'm getting tired too....!) After an hour, they came out and spoke to us and here is the nutshell:

THERE'S A REALISTIC POSSIBILITY WE'RE GETTING HIS TRACH OUT SOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!(do I sound a little excited?!?!?!??!?!?!?!?!?!??!?!?!?!?!?!?!?!?)As long as all the tests run this week and biopsies/washes that were done don't produce any red flags, i.e. signaling other issues that might need to be treated first. It could even happen as soon as 6 weeks or so....but I've learned to be ready for things to change at any moment, as some problems wait and rear their heads AFTER we've gotten all excited, but anyway, here's the tentative plan. He will have a single-stage reconstruction of his upper airway, with two grafts put in - one in the trachea area which has somewhat collapsed, and one between the arytenoids which are attached to the vocal cords, and are preventing them from moving due to scarring. The trach will be removed at this point! When that surgery is scheduled, he will be in the hospital here for 2 weeks and then must stay in the area one more week. Then, 2-4 weeks later we come back to Cincinnati for checking up on, then again a few weeks later, etc, etc....its a lengthy process to make sure everything is okay, but well worth it. The doctor in charge of this reconstuction is actually the one who INVENTED it!!!!! And has been, along with his wonderful team of physicians, improving upon it for a while. Needless to say, we have been very impressed with the doctors here.

I know many of you are tired of reading (if in fact you've made it this far), but I have to tell a quick story of our flight here. As many of you know, Josiah is quite the "charmer", loves people as soon as he meets them, etc. So as we were boarding the plane, we happened to be ahead of the pilot who Josiah had a lengthy conversation with. When we were readay for take-off and the pilot got on to welcome everyone, he said "and I'd especially like to welcome Josiah on the flight - he's 4 years old, and a fine young man." Josiah was pretty excited. Throughout the flight, the flight attendant fell in love with him, and half-way through it came back and said, "can I get him some pringles or some M & M's for free?" (they're usually $3 each). So I leaned over to Josiah and asked if he'd like some chips, to which he replied, "Yes, I'll take some chips and salsa please". (spoken like a true New Mexican?!) The attendant brought him back chips, M &M's and a deck of Delta playing cards....

Thanks to ALL who have prayed for us on this trip. Unfortunately there is one more unpleasant procedure tomorrow morning (the nasal probe looking at his vocal cords again, but this time he has to eat something with it in there so they can evaluate his swallowing). Thank you to Mamoo and Papa B who have been taking amazing care of Silas in Colorado this week! We love you all! Shelly, Art and Josiah