Dorrie’s new chair finally arrived. It was difficult to adjust, mostly because she is just on the edge of big enough for it. It’ll be easier once she’s larger and we don’t have to have everything at the very smallest setting.
But with her HME and the oxygen holder (which is stupidly attached to the side of the chair, making the thing too wide to fit easily through most spaces) we can shove her suction and her sat monitor on the tray underneath and quickly and easily roll her around! She actually got to see other parts of the downstairs, which she hardly ever gets to see.
I don’t really like the pictures I got; she was stressed because she wasn’t sure what was going on, and the seat still wasn’t quite right to keep her sitting upright, so I had to tilt it back more than usual.
In the front room.
The mysterious little room where mom and dad disappear.
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.
Dorrie with one of her preemie outfits.
She loves her tennis boys.
Two Mondays ago, the day after I got back from my jaunt to Pittsburgh, we had several big appointments up at DHMC. The most important, to my mind, was the eye checkup we’d been trying to get scheduled for, quite literally, a year. Because it was so difficult to schedule for reasons I still don’t entirely understand, our eye check, which should have been due in April (retina guy said to come back in a year), didn’t occur until July.
Fortunately, we hadn’t seen anything to be concerned about with Dorrie’s vision — she tracks very well, she looks at things up close and far away, and her eyes seem to have corrected themselves to work together rather than allowing one to drift not quite with the other. The doctor confirmed that her eyes appeared as they were described in the report from last year, so in this case no change is good news. He asked us to come back in 6 months and we can figure out then if she needs some glasses or not. (Even without ROP to contend with, genetics says she’s going to have glasses eventually.)
The second big appointment was with Dr. Optimist, who agreed that we could start trach collar sprints. Unfortunately, her nurse was not there at the appointment with us and things got pretty screwed up in the transfer of information from the Doctor to the DME company. First, though the appointment was on Monday, they did not come out to bring the necessary equipment until Friday. Then, it wasn’t our normal RT who came, but a couple of complete dimwits. And finally, even though it had been a whole business week since we were at the hospital, the DME had not managed to get any written orders from the Doctor concerning the trials.
So, our normal RT and I have been talking about the upcoming trach collar sprints for months now, and she was well prepared and thinking about it. Unfortunately it seems that she’s left the company for greener pastures, so the aforementioned dimwit squad came on Friday. I could tell things were not going to go well when they hauled in the giant compression machine, and my fears were confirmed when Dimwit #1 actually asked ‘she’s not on oxygen, right?’. ‘Um, yeah she is’, said I, looking around at the 2 giant cannisters of liquid O2, half dozen mid-sized oxygen cylinders and one giant cylinder (M or E size)).
After the months of idiotic wrangling it took to get them to give us the silent liquid instead of the compressor, I can say I was less than thrilled to get this new piece of equipment that was just as loud if not louder. Ridiculous. I said as much, but given their lack of brain activity it’s not surprising that they had no suggestions. I also wanted to cry at the idea that not only did we have to deal with this new noisy thing, but that we would be even less mobile than before — this thing doesn’t have a battery nor does it attach to a pole, so it’s stationary even more than the vent is! I said as much, but they again didn’t have a response.
So I tried out their ill-concieved setup and it worked about as well as I expected (very poorly), while they looked over the vent. And proceeded to WIPE OUT THE SETTINGS. I was livid, especially as it emerged that they did not have the proper settings written down anywhere. It took more than a half an hour to figure out what they were supposed to be, while poor Miss Dorrie had to sit and breathe through the ambu-bag.
Finally, almost a week later, the head RT came back with slightly more reasonable equipment, and thanks to several people online I had a better idea of the different setups that were actually available (no thanks to them for telling us.) So once Dr Optimist and her crew are back from vacation on Monday, we can hopefully finally actually get started on this business, two weeks later than we wanted to.
The last appointment, which was actually the first one of the day, was with the audiologist. We had gotten molds taken weeks ago and Dorrie’s hearing aids were in so we could trial them. She predictably didn’t approve of having things stuck in her ears, but she got used to it remarkably quickly and she’s been willing to wear them for quite a long time every day. We usually end up only putting one in if she’s on her back, because of her tendency to smush one ear against the floor (which causes an aid to screech in protest). The aids themselves are so cute. Purple with purple glitter ear molds.
In the meantime, the stroller hasn’t come yet. Supposedly we’re waiting for a single part so I’m hoping desperately that we get it this week.
Dorrie also had her 2 year checkup at the Ped, but coming on the day right after all of this, it was pretty much an anti-climax.
We’ve also just added pears to the list of foods we’re trying out; so far we’re 50/50 – she kept them down fine yesterday but threw up today. It’ll be at least a week before we decide how she’s tolerating them.
I like this picture because she’s holding her head up so straight and tall.
She was watching me eat them with such intensity that I thought she might like a taste. She didn’t seem to mind.
Another pic with a clear view of one of the hearing aids.