Almost nothing at all happened the week before last. I’m not sure if I even got many new pictures to add. There was no word on the stroller, there was no advance on the trach collar, there wasn’t even any PT, since she was on vacation.
This week we finally got the ball rolling on several fronts.
This has been an endless source of frustration for us. The stander was delivered to the equipment company in May and we got it in June. It’s now been 2 months since we got that. 2 months since we heard the stroller was approved. So this week we started harassing everyone: we called the equipment company, we called the PT, and finally we’re told it’ll be delivered on Monday. I’ll believe it when I see it, but at least we have a promise of action. I hope it’s as nice as I remember!
After the fiasco a couple of weeks ago, the head RT came to our house and brought some additional materials and showed me how to set up the mask in a more reasonable fashion. Finally, last Wed, he and Dr. Optimist’s nurse came to the house and we were able to try it out. Dorrie was much calmer this time without the Moron Twins messing around with her ventilator and she handled it very well. She sat in my lap and kept an eye on the people in her living room while we had the mask on her. After we’d had that on for about 30 minutes, we switched her to a simple HME with oxygen attachment, and we were finally at the point where I wanted to be. Oh, it was lovely to have her attached to just a tank with a nice light tube.
We also got a chance to see how she would do just on room air — switching to the trach mask entails a near complete disassembly of the ventilator circuit, because we use the same humidifier. So we tried just pulling her off and letting her sit while the RT put it all together. She did great! I was nervous because the only other time she’s off oxygen during the week is for her trach change and she always drops like a stone. But apparently that has much more to do with the fact that she hates trach change and screams bloody murder when she realizes that’s what’s about to happen than it has to do with being disconnected from the oxygen source.
Our biggest problem with the collar (either way to do it) is suctioning. I don’t know what other babies are like, but when Dorrie is awake and active, she can need suctioning as often as every 5 minutes. This is generally fine because we have suction in line with our vent circuit — it’s never detached from her and remains as ‘clean’ as the rest of the circuit’s interior. The trach mask just has a hole where you can thread a catheter in and suction directly. The HME has a little flippy door where you can do the same. The question is what to do with that catheter when you’re not using it. If she only needed it every 30 minutes or so it’d be one thing, but it seemed like we were always pulling it out, and I get more and more tense because it just feels so dirty. Plus it is a huge pain in the butt!
So I think what we’re going to do is leave the inline suction on and attach the HME to the elbow of that. Hopefully it’ll work, because otherwise I think mummy is going to have a breakdown over the suctioning. We’ll have to figure out what to do with the suction when she’s on trach mask at another time. For now we don’t intend to use that much — disassembling the vent circuit while we’re by ourselves and trying to keep track of her is really not a great option.
It’s probably an even worse idea when we’re not alone and there with the nurse. I’m not going to get into too many details but suffice it to say she got very flustered on Wed and when the RT told her to reassemble the vent circuit after we finished with the trach mask it almost proved too much. She spent the rest of the day in a fog.