Cancelled bronch :(

 Long story but I cancelled the bronch for Casey.  When the pre-op people called they told us to be there at 6:30AM!  I thought something had changed.  No one could tell me what the actual time of his procedure was.  Come to find out, there really isn't a time set.  Its first case, second case, etc.  But, when the pulmonary nurse called on Monday morning to check what was up, she said to just ignore what the pre-op people said, sigh.  I wish I had known.  When I tried to find out what was up, on Saturday morning-because no one called me back from pulmonary on Friday, I was sent all over the hospital but no one knew anything.  I don't know why I never thought to ask to have the on call pedi pulmonary doc paged.  We're pretty self sufficient and haven't needed things after hours very often so it didn't even cross my mind.  

Anyway, he is scheduled for Monday the 24th and we're to be there at 7:30 AM.  That's early enough for me!  We're way out of practice in getting ready early.  So crazy to remember that we used to have Casey ready by 7:00 AM certain days of the week his last few years of school.  (some days were later).  

Casey has to get another Covid test done.  The same service will come here.  The nurse I spoke with at pulmonary said they had no problems getting into the van to test him but when they called to set him up, they said NO WAY so they have the service coming again Friday at 10 AM.  

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.

Not a whole lot accomplished today.
BUT, I did call Dr. Lahiri's office, the pulmonologist who will be doing Casey's bronchoscopy on Monday, in hopes that he'd call me back to chat with me about the procedure.  Well, I was writing down my questions when I called and the person said let me see if he's out of clinic.  A minute later he was on the phone!  I love that our docs are so accessible!   We had a nice chat but I didn't ask him all that I wanted to because I hadn't written down all my questions yet, ha ha.  Oh well, I'm feeling better about the whole thing.  The two worst things will be getting there at an unheard of hour--not sure when exactly, but Casey is the first procedure and they usually start at 7:25, yikes!  Secondly, we have to get there early and head to the Comfort Zone to get Casey's IV.  Other than that, Dr. Lahiri thinks it will be quick--like 10 minutes.  He doesn't anticipate any complications and he's not even sure if he needs to do the wash procedure.  That would show if he's had any aspirations (not a concern), take a sample of cells (probably not necessary) and take a culture to see if anything is lingering in his lungs.  Mostly we just want to see if there is any inflammation or anything unusual going on which we really don't anticipate, either.  We'll also try to upsize his trach to a Shiley 6.0 long which is the next size up.  I'm hoping it will help alleviate his plugging and also go a bit longer down which will hopefully ventilate him a little better and make us not so worried that his trach is going to come out.  He's had this size for as long as I can remember and he's grown a lot.  Tomorrow I speak with anesthesia.  Dr. Lahiri knows not to fast SMA kids too long so he's in my corner.  He's going to try to talk with them before they call me but he said to tell them to call him directly if there is any problem.  I have no problem of giving him just formula, water and juice with no baby foods or supplements during the night and stopping about 4 hours before surgery and then giving him Pedialyte for a while and stopping a couple of hours before surgery.  Anyway, I know they won't give me a problem of restarting him right afterwards.   Last time he had tubes, and his 'nether region' operated on they let us start up once we felt he was feeling good and not queasy.  Boy, this is a long paragraph, sorry!!!

Colin wasn't too cooperative in school today.  It started before Mel came to do Music so it wasn't that.  Not sure but I think he was just finding it fun to be ornery.  He didn't earn a fun break so he did nothing for half an hour instead of watching wii walkthroughs like he usually gets to. 





Casey has a pretty good day.  But, he wasn't into his Creative Writing class.  He had to leave for being too noisy.  They decided he would write a letter saying why he didn't like the class.  Paula tried to give him some ideas but Casey had his own:

Mrs. Short,
I am upset about class.
I want to go library.
Casey

He really liked the Read, Read, Read class because it was a relaxed atmosphere and was in the library which is one of his favorite places in school.  Of course we all told him we understood but sometimes it's good to try new things and see how it goes.  So we will persevere and I hope he comes to enjoy it. 

Played Skylander's SwapForce for about an hour.  We had a tough time defeating one of the bosses...I forget his name but we killed a bunch of our guys before we defeated him, phew!

Casey hasn't been complaining about not being able to do his Google maps.  Gene was going to call this afternoon but didn't.  I hope Paula can figure it out tomorrow.

Gene went to Costco for vinegar and dog food.  It's almost 8 PM and he's not back yet--it's time for bed!