Tuesday, May 17, 2011

Back to Cincinnati...

Timmy had a busy weekend and Mortimer has a lot on his plate right now, so I told him I'd write a quick post about our trip to Cincinnati, and then Mortimer will try to find time in the next few days to write about the rest of our weekend!

On Friday we went down to Cincinnati for a scheduled scope. We were originally supposed to go down in June, but June is shaping up to be a pretty crazy month, so they agreed to bump up his scope by a few weeks. The best part of the day came first--we stopped up at the NICU and saw a lot of our old friends. Timmy had a great time seeing so many of his old friends. And when we left, we got to take him with us!

After that we headed downstairs to the surgery check-in desk for Timmy's scope. We weren't quite sure how it all worked, since we'd always done this in-patient before. After sorting out some paperwork problems, we headed back to a little room to wait. Timmy got all dressed up in a little gown--we thought he looked like he was ready to play a role in a Nativity scene! They were running late, so he was able to get a little bit of a nap in. The other new thing was that instead of dropping us off at the waiting area, they let us go with Timmy all the way to the OR, so we got to peek in and see what the OR looked like.

We talked with T's docs afterwards. No groundbreaking news. Mostly everything is the same as it has been the last few times. The surgery site still looks good, and though the swelling in his airway has gone down a bit, his malacia hasn't really improved. He also had a large laryngeal cyst, which they took care of while he was under. Once again we were told that Timmy is looking much better on the outside than on the inside. The real-life implications of all of this are that it looks like we'll be dealing with the trach for quite some time--minimum of a few years, and most likely longer. It also means that Timmy is not a good candidate for a speaking valve so we need to be pushing even harder with the sign language! (We got a few sign language books and DVDs at Timmy's shower on Saturday, which will help with that!)

Speaking of sign language, Timmy signs "Mommy" all the time now. Sometimes it's hard to tell whether or not it's intentional, but we think he knows what it means! He also signed "milk" this morning, so we gave him a bottle right away. (Again, not sure if it was intentional, but we're trying to "reward" his signs with the appropriate action.) Watching a sign language video with his Aunt Sara yesterday, Timmy signed "dog" over and over again. (This one we're sure was just mimicry, but we're pretty excited that he's starting to talk!)

Back to Friday...Timmy had a pretty rough time post-anesthesia. It seems like as he gets older he has a harder time coming back from the anesthesia. (This is his 14th (I think) procedure under anesthesia in his short seven and a half month life.) He was a little out of control. The great part, though, was that a bottle of milk actually helped him to calm down!! He napped for awhile in the PACU, and when he woke up he was a bit better, so we decided to go ahead and head home. Saturday morning he was back to his perky self. Saturday we had all sort of fun, and I'm sure Mortimer will tell you all about it later.

1 comment:

  1. Mimicry, accidental or whatever...."mommy" was his first word!!!! Yay!!!! That's so great to hear how well he is doing with signing. I'm certain he'll continue to catch on and be 'talking' up and storm in no time! And how great that he is taking bottles...we are so happy for you guys. We will continue to pray that the inside does begin to match up with the outside as his little body continues to heal and grow. We love you all...and hate that I had to miss the shower :( Much love!!!