August
2009
Overdue Update0
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.
