Figure it's about time for an update, since it's been over a month!
I swear, this child of mine is a CLOWN! He keeps us laughing with his silly faces and little games. He loves to make people laugh. I love it! One of his favorite things to do now is cross his eyes at me. Such a goober!
He's been getting into everything lately. Even though he's not mobile, I still have to keep a very close eye on him! He's discovered the whole 'cause & effect' thing. He'll yank on his feeding tube & watch it shake the med pole. He's yanked on his ventilator circuit too hard & pulled the humidifier chamber off the shelf, which spills water into his circuit, which about drowns him--no good! So we had to bungee cord the humidifier to the shelf so he won't pull it off...the little rascal!
He's made big strides developmentally in the past few months, with no formal therapies, but we had an appointment with the NICU Grad Clinic last week, and they referred us to Physical Therapy & Speech Therapy. We can't get them in-home (one disadvantage of living in the boonies), so we have to travel to an office, but I know it'll be worth it. Even if we just visit them once a month, they can give me things to work with him on at home.
We go see Speech Therapy on Wednesday, the 13th, and I'm really excited--we get to try out a Passy-Muir valve. I'm not totally sure how it works, but it's a valve that will allow Clay to 'talk' with his trach. He already does a good job of making noise around his trach anyways, so I'm sure he'll do great with the new valve. I'm excited at the thought of getting to hear him laugh. I bet we won't be able to get him to hush! ;)
We also see Clay's pulmonologist on Wednesday. Even though it's been 3 months since he caught that nasty pneumonia, we're still feeling the effects of it. He still requiring about 2 liters of oxygen, compared to the 1/2 liter he was on before...and he still works harder if the vent becomes disconnected. So I doubt any changes will be made at his appointment. Which I am okay with, I just want to make it through cold & flu season with no more illnesses. Please say a prayer we can do it! Then maybe this Spring we can start doing trach-collar trials again...
Another thing on our radar: surgery #9 (or is it 10?).. We met with Dr. Draus, our surgeon, a few weeks ago and we talked about going ahead with the surgery to fix his stomach issues. Dr. Draus also recommended going ahead with a Nissen fundoplication, which will help with reflux and keep him from aspirating. Click Here for more info on what a Nissen is, if you're interested.
We're scheduled to meet with Draus again at the beginning of January, and we'll set a date for the surgery at that meeting. It'll probably be another very invasive surgery and another week-or-two-long PICU stay...I'm dreading it, to say the least. But it will be nice to get rid of the J tube & start feeding his stomach. Then we can start working on oral feeds--which I know will be a battle all it's own--but we'll get there eventually!
Y'all say a prayer for my Clay-bug. He's been doing really well and acting like he feels so good. Pray we can keep him like this! We would love to have Christmas with our baby at home this year :)
Lots of love & peace to you all! XOXO!