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.
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