Bronch and upsized trach for Casey

I'm going to cheat a little here and use my Facebook posts to get this entry going and then I'll fill it out a bit :)

5 AM   Going to get Casey up in a minute. We have to leave at 6 AM for his bronchoscopy. I'll update when I can.

Here's nurse Julie Marshall and Casey rockin' pre-surg

7:35 AM  They just took Casey back. Got IV in on first try. Casey is nervous but stoic.

there he goes!

8:15 ish  He's done! Dr. Lahiri said It all looked great. No infection or plugs or granulation. Oh, he just wheeled by eyes open.


9  AM  Settled in PACU. Started food. Watching the History channel. Dr Lahiri will be back soon to upsize trach. Have to stay at least one hour.

still a little groggy

11 AM  Larger trach placed. He says it feels weird but he sounds good. Julie started doing the change but couldn't get it passed the stoma so Dr Lahiri took over and got it in. Now, out with the IV and we're out of here. Heard the roads were bad so we'll take it slow.

chatting in recovery

Noon  We're home. Van did great in the snow and Julie was a good driver Casey thinks he's big stuff because he has a "big throat" now, or a grown up throat, ha ha. Thanks for all the positive thoughts/prayers/mojo sent our way today.

1 PM  I'm off to a nap. (didn't sleep well--too anxious about not getting up in time!). Julie has both boys in the wish room and they're all snuggled in. Casey is a little out of sorts but I think he's just tired and doesn't want to share Julie. Julie is going to wii with them. Gene is on a work call and is back up.

All in all, it was a successful day.  It's always nerve wracking to go to the hospital for ANYthing but to have a procedure done that you haven't done before is really nerve wracking.  AND, I hate any time that one of my kids has to have anesthesia.   Today they used Versed and Propofol, which Casey has had before.  It's not considered to be a heavy anesthesia--kind of middlish one.  They kind of explained it to me that way.  Speaking of, Julie took a picture of me and the Resident Anesthesiologist. 

chatting about sedation

Dr. Lahiri is so laid back and I'm very thankful for him.  I had told him about my concerns as to placing the new trach while he was under anesthesia.   The anesthesia docs didn't get it but when I talked with Dr. Lahiri he was on my side and understood.  Julie and I are the ones who understands his facial expressions and know how he likes to be positioned and that kind of stuff.  Turns out I'll bet they were glad they didn't do it because as soon as the bronch was done they were wanting me and Julie with him because they had no clue about the Trilogy vent.  I had thought that one of the RTs that knows the Trilogy was supposed to be there but something must have come up because I never saw her.

It was so funny to see Casey wheeled by the room where we had been waiting.  He was all wide eyed and wondering what the heck was going on.  They got Julie and I down into the recovery room pretty quickly.  We had some very kind nurses in there.  They pretty much let us do whatever we needed and tried hard to help us out with anything we needed.  I think they were a little surprised as to how efficient we were with everything and didn't need much from them.  They kept wanting to use their suction or their syringes, whatever, but we always had what we needed.  (does that make sense??)  

Gene and Colin did fine at home.  He did his water, meds, neb, cough and got him dressed.

Julie was going to play wii in the wish room so they could be out there together and Casey could rest, but we think we'd have had to re-sync the wii u so I grabbed the seriously old Play Station that Lauren gave us and they played that.  Everyone was happy.

Julie also squeezed in a call to DynaVox.  FINALLY got it figured out for Casey to be able to send words to the Internet.  She got Ian, and he has always been the best tech.  They had to take off the keyboard Casey used to use to send info and he set it up a different way, but it works!  Now that keyboard won't be there all the time taking up space when he's using the Internet.  It will pop up for him when he hits the 'Enter Text Here' box.  Anyway, I hope this works.  Casey was very happy to be Google mapping again.  He wanted the name of the town that the Rug Rats lived in.  They were playing an old Rug Rats game so that was what was on his mind.  Gene Googled it and came up with some town in California that really exists so he was happy. 

Comcast guy came.  Turns out it was a guy who had been here before and was awesome!  He fixed us right up and we chatted about some things they have going on in Beta and some upcoming technologies.  He also told me that I can get a really long HDMI cable so I will be able to sit on the couch and play computer games with the boys from my laptop and project on the TV.  Before I was having to sit on a stadium chair that hurt my back and butt and be tethered with a 3 foot cable.  And,that was an RGB cable but this laptop has HDMI so I'll probably get one of those.

What else....Oh, I had just been thinking that we hadn't had a major formula malfunction in a while and...from my post on Facebook...
I love how Casey uses his DynaVox to truly communicate something--not just his GoogleMaps or normal conversations that we have often (Like, Football, ipad, mom, please). This time he said, "Back cold." I had just given the boys their 'hot packs' (rice socks in the microwave). He said "Back Cold". Normally he doesn't like anything warm on his back or to have it rubbed or anything. I thought maybe he was feeling off from his procedure today. So I went to move his hot pack from his feet to his back and, voila, his med port on his g-tube extension had popped and formula was running down his back!!! I'm surprised he didn't say "Back Wet" but it still got his point across!

Got the boys into bed early.  Colin slept in late so I wasn't sure if he'd go for it but it sounds quiet out there now.  I can't believe there is school tomorrow.  We're supposed to get the frigid cold weather back. It's down to 4 degrees already.  Poo.