One Year Later - April 8

It feels a bit surreal to me to be sitting in this (always) freezing waiting room again. The last time we were here waiting on you was when they placed your trach - exactly one year ago yesterday! I still can't believe that you've cut the original prognosis in half: two or theee years old down to 17 months (by the time we finish the process!) You've done great this last week with no support breaths and tonight we start sleeping with NO VENT!

We had kind of a rocky start this morning. I set two extra alarms because I knew I would not want to get up at 4:00 am, and I didn't, but we were still about 10 minutes behind schedule when we left. Didn't make a huge difference though because there were about ten other families trying to get checked in also. We had to be here at 6:00 am. Finally at about 7:30 they called us back to start getting all the paperwork done, answer questions, etc. That's when they told us that you were going to have to get bumped until closer to noon because we didn't stop your feed until 4:00am...which I specifically asked about and was specifically told 4:00 was ok... And you aren't supposed to have anything for eight hours before the surgery to minimize the risk of aspiration if you have a reaction to the anesthesia that causes you to vomit. Sigh. 

Super curious about this thing that they put on me...

Fortunately, the ENT has a completely full schedule (9 procedures!) this morning and said you would be fine since it was just milk (and a very small amount at that since it's such a slow feeding at night), and you had a fundoplication with your gtube surgery that doesn't allow you to throw up anyway. Woohoo! So at about 8:45 they took us upstairs, I got to sign all the consents, ENT was thrilled about the weaning process getting going and moving so quickly so she said she was going to look at possibly downsizing your trach today also (or within the next week if she doesn't do it today) and then we waited some more.

Another bracelet! This one is prettier...

They gave you versed (a sedative) at about 9:20 and by 9:25 you were signing "sleep" and ten minutes later looked like this:

You kept trying to lift your head up and sit up but couldn't. It was too sad looking to be funny.

They took you back at about 9:45 and here I sit...

Almost 12 hours later...

You were back in surgery for a little less than 2 hours when they came out to get me. ENT said you were amazing! She still wants to list you as a "moderately difficult intubation" because your neck will still make things difficult once your trach is out, but as long as they know that ahead of time it should be ok.

The airway evaluation was excellent. There was one small cyst that she didn't even touch because it doesn't pose any problem. There was no scar tissue, no granuloma, absolutely nothing! She did notice that the left side of your vocal chord wasn't vibrating but she wasn't sure if that's something new or from today or something that's been there so she was going to look back through all of your surgery notes and procedures to see if it was ever noted before. You were making plenty of noise trying to get out of your bed and into my arms though so the right side is more than making up for it!

She cleaned out your ears and went ahead and put tubes in to prevent any future drainage issues. Your ear drums were still red and dull looking from the last infection but she said there was no fluid build up yet so hopefully the tubes will keep that from happening.

Last, but probably most importantly, your trach got downsized! She said since it all looked so great, and you had done so well with the BiPap settings this last week, and she doesn't want to be the one that slows down the process that she went ahead and bumped you down from a size 4.0 to 3.5. With a smaller diameter trach you will be breathing around it more and getting used to the air going in and out of your throat instead of the trach. You will also be able to be more vocal as the air gets to your vocal chords.

Whew! She conveyed all of that (and I actually remembered it!) in about five minutes in the recovery room where we were stuck for close to 45 minutes while they got all the final instructions and charting taken care of. And you were not happy. You kept burrowing into my shoulder and getting really still - almost like you were hoping they couldn't see you if you weren't moving. As we counted the 13 poke holes later from them trying to get an IV line open, it made more sense! Then they moved us down to the post-op area where we had to hang out for about an hour to make sure no problems popped up (and you took a short nap finally!) and then we finally got to leave at about 12:15!

You were so happy to be leaving - you smiled and waved and gave kisses to everyone as we walked down the hallway. Once we got home you took about a two hour nap, but other than that you've been your usual cheerful, happy self!

I LOVE playing with my hats. But it can't just be one of them. I must have both.

Brushing my teeth like a big girl! For some reason, you won't let anyone else brush them, but you have no problem putting the toothbrush in your mouth!

You did so awesome today and I am SO proud of you! We're getting so close to being done with the whole trach thing and it's getting more and more exciting each day (and more and more nerve wracking!)