Speech, Blood and Trilogy

Busy day today.  Got the boys up earlier than normal so they would be ready for Courtney to come for a SLP visit at 10:00.

Got through to endocrinology and got the okay for the boys to have their calcium and phosphorus taken today instead of the Wednesday and Thursday that they had indicated.  I guess I'm not so good at reading calendars lately.  Anyway, infusions on Tuesday would be a go if we got the blood work done ASAP so results could be read today....

Courtney (SLP)came and chatted with Casey about camp.  He kept talking about car racing (the ADK 400 which is kind of like a Pine Wood Derby race).  He said it made him sad.  Never did figure out why.

Cheryl came for a little while, too.  She's going to be working with the boys some for summer services.  She shadowed Priscilla a bit in the beginning of the year so we were familiar with her-at least Colin and I were.  Casey pretty much warms up to anyone so I'm sure she'll do fine once he puts her through the paces, lol.

Then we packed up and headed out to Blair Park to get the blood draws.  In the Given Building they have a lab set up now and it's part of Fletcher Allen.  We had a good experience there and we'd definitely go back again, which, apparently we will be doing every 3-4 months.  There was only one woman drawing blood but we were the only ones there so we were taken in quickly.  Gave Colin the choice as to whether he wanted to go first or second.  He picked second.

Casey did well.  She found a vein on the inside of his arm pretty easily.  She got him on one stick.  There's not a lot needed for these labs so he was done lickety-split.  Colin's hands got all sweaty and he was nervous, but she did him quickly and easily too.  Done!  The only drawback, if you want to call it one, is that they didn't even get a sticker!  I mean, I know they are 11 and 15 but I still like stickers and I'm on the far side of 40!

Headed home in hopes of Paul being able to bring over Casey's Trilogys.  He was able to, so we spent some time setting up the vents and trying Casey on it.  Well, once again he fretted and freaked and cried and fussed.  We've told him and told him that it will take some getting used to and that he may feel a bit sore (different chest muscles being used) and that Paul will NOT take away the LTVs until we are all feeling 100% happy with the Trilogy.  I truly think it's an emotional thing.  He says it feels different but okay.  I guess when you've relied on a certain machine to help you breathe for the last 10 years you develop an emotional attachment to it.  So, we'll give him time.

This afternoon and evening we've switched him back and forth.  One of these times, I hope, he won't even realize it and it will all be fine.  Tonight will be tricky.  We have the heated humidifier attached to the new vent so I'm hoping we can keep him on it more of the night than less since the LTV will just have a nose on it.

Casey's Trilogy Trial--finally

We got the call this morning that there really, really was a bed for us to come into the PICU to do Casey's trial on the Trilogy vent.  We got Casey up and in the shower.  We were out of the driveway by 10:30.  Checked in.  Settled in our room.  Then guess what.  We wait.  They had to get an okay sticker put on our humidifier and things like that. 

We got to catch up with a few of our nurses from the past, which is always a good thing.  Of course everyone is always amazed at how big Casey has gotten and how good he looks!

Somewhere around noon or 12:30 we actually put him on the vent.  We tried the same exact settings with the passive circuit and it was obvious that it was not going to work.  The vent is so smart and so sensitive that it was trying too hard to give him the Volume of ventilation that we had plugged in that it was going very quickly and giving him way too big PIPs.  We have Casey's current vent set at a Volume of 350 but that never gets delivered because his leak is so large.  The Trilogy tries to compensate for that and it was just a mess for him!  We could have tried plugging in a lesser volume but I've been wanting to try pressure for a while so this seemed like the time to try.

The pressure ventilation seemed to work well for Casey.  His chest rise looked good- better than the LTV has been to his chest lately.  They had an CO2 monitor in line and it was the same as on his old vent and on the new one. 

We won't get the vents until tomorrow or Monday.  They don't have all the stand in yet but that's the least of my worries.  I don't mind using a chair for a couple of days or propping it up some how.  We have to get bloodwork done tomorrow with both boys so the new vent may not end up coming until Monday.

So, how was Casey in this whole process?  Well, at first he was great!  He loved having the hospital TV, his ipad and his DynaVox going.  Later on, while we were doing the trial, he broke down and had a melt down.  I think it was the anticipation and worrying about change, and things like that.  We ended up giving him a 1/2 dose of Ativan but I don't think it ended up helping.  He finally calmed down but was on the edge melting the rest of the time there. 

We decided around 3:00 that we were good and ready to head out.  Took a bit more to get our discharge papers and we were home by 4:30.  As we pulled into the driveway, Casey started bawling again!  I think he thought we were going somewhere fun.

He still been fussing and melting on and off.  He hasn't been able to tell us what's wrong.  I think he is just glad it's done with and he's letting off his anxiety by fussing.

Colin had a good day.  He likes it when his brother is not around and he has control over everything.