A couple of weeks after our first evaluation, I got a call from the agency to schedule the second. We were finalizing a date when I suddenly realized that they were making an appointment for there rather than here. Now why they would have assumed I’d know that, when the first person did come to the house, I have no idea.
So we changed the date to one where we could actually go, and last Thursday Bob took the afternoon off work so we could all trek up to Concord. In more amazing examples of inefficiency, the fact that they had already spent 90+ minutes evaluating her did not mean we could avoid repeating her entire medical history and answering a dozen questions which they should have already known the answer to. I do love to talk about Dorrie, but it gets tiresome after a while to have to go through the same thing over and over. I know they write it down. I see them do it. Does it disappear into a black hole afterwards?
In any case, I entertained Dorrie with one of her toys while we answered all these questions, so she remained in a reasonably good frame of mind by the time the eval finally got around to involving interaction with her.
She played with an iPad for a little while, and then the woman brought out this machine:
I guess finding out about this thing was worth the drive and scheduling nonsense. It’s actually really pretty awesome. It’s a touchscreen computer which can be fitted with different plastic grids on the front, dividing the screen into varying sized boxes. (The one Dorrie tried out had 8). In each little box it can display the image of the user’s choice, and then all the person has to do is touch the image that they want. The Vanguard says the word associated with the box.
Dorrie has been spending most of this school year practicing making choices based on pictures, so if her motor control can be improved enough that she can really hit the image she wants, this would be a really great system for her to use. In her IEP goals for next year is attempting to increase the number of things to pick from all the way to 5 choices (from the two she currently does), and I really didn’t see how that could be handled until we saw this in action.
The day couldn’t entirely end without further annoyance, however, as we discovered the evaluation wasn’t over yet! No, even though they knew well in advance she was coming and should theoretically have had all the equipment on hand for this visit, they did not get around to having an eye gaze device available, so we will have to return for a third visit at the end of July. I’m very interested in seeing how this works, so I’m looking forward to it, but I don’t think any of these places really bother to take into account or care that each trip requires someone(s) to take time off work.
No, by the grace of Miss Piggy, we don’t have it.
Around the middle of October, we started to hear tell of kids in other states getting vaccinated, but no matter who we called in NH, no one ever had any. Then we heard tell from Grammy of non-essential hospital personnel getting it in her area (aka some of her friends — people in the wrong age group and with no patient contact). We started calling potential sources more frequently after that, and eventually, the week of October 19th, we heard that some shots had arrived up north, where our specialists are. But neither they nor we wanted to risk bringing Dorrie to the hospital, and they thought for sure that our ped would have them the next week. Our ped’s office insisted this was not the case, but I thought maybe the hospital might have some insider information no one else was privy to. Reluctantly, I tried to stop myself from trying to plan ways to drive ourselves up there to get the vaccine.
Then, suddenly, everyone changed their mind. Why? Did our incessant badgering finally get results? Did the fact that someone from the hospital actually talked to the nurse at the ped’s office finally make their assertion that they had no vaccine real? I have no idea. But somehow, what had been on Friday ‘wait until the ped’s office get some’ became on Monday ‘the nurse will drive down with a dose and give it to Dorrie on Wed’.
First shot acquired and given, check. I tried to stop thinking about it, figuring that by the time she was due for her second shot, there would be more supply and we could worry about it then.
Sure enough, mid-November, the ped’s office called to tell us that they were finally going to get some vaccine in and did we want any? Hell yes, I said, and noted to the woman on the phone that Dorrie had actually gotten her first dose on 10/28, so if we went by the minimum three weeks in between shots, she could get her second dose on 11/18. And could we just have our home nurse go by the office and pick it up and give it? She left and (I assumed) went to relay all this information to the doctor. She returned to the phone to say this was fine and we could come pick up the shot on Wed morning.
Wed morning rolls around and the nurse heads over to pick up the shot. Except once there, they are happy to hand over the vaccine. But what they won’t do is actually provide her with the order that allows her to give it. Why? Because even though every single piece of vaccination guidance states that the second shot can be given after 21 days, their office policy is 30 days or bust.
The nurse very wisely took the shot (possession is 9/10ths of the law!) and came back to report this latest idiocy. We put the dose in the fridge and began calling people again. But we couldn’t get anyone to sign off on it, so in the fridge the shot remained over the weekend. On Monday we tried calling again and still the ped was being recalcitrant. At this point we were getting irritated — they were saying they wouldn’t even give the order for the next Wed (the day before Thanksgiving), because that was only 28 days and not 30. (Because somehow the terms ‘month’ and ‘four weeks’ became equivalent in their heads.) Because of the holiday, we had no nursing coverage after Wed, so that would essentially mean putting off the shot for nearly a whole extra week.
Fortunately, once again persistence and nagging paid off. More calls on Tuesday eventually produced the desired result. Someone decreed from on high that bending office policy to follow state guidelines might not be the end of the world and we finally got our order to give the dose at 28 days. So now, theoretically, as long as Miss D remains swine flu free for the next couple of weeks, she should be pretty well covered.
We just have to figure out where and when to get Bob and I some vaccine.
So, week or so ago, we suddenly noticed that Dorrie had a little bruise on her chin. It was quite a dark one and looked painful, but we couldn’t think when it had happened.
It was starting to fade when the following conversation occurred.
Nurse: I’ve figured out how she got that bruise on her chin!
Me: Oh, really?
Nurse: I was looking at it and it just came to me.
Nurse: I had been trying to figure it out for a while, I know the two of you have been watching it, too.
Me: We have. It seems a little lighter today.
Nurse: I think it does look like it’s getting better. It’s nice to know how she did it, though.
Me: Yes, how?
Nurse: When she was lifting her head up and putting it down, she must have banged her chin on something!
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.
Just to mention that the new night nurse I mentioned a little while ago has yet to start working, and the nursing agency has no idea when or if this is ever going to happen.
Right now our only remaining nurse is doing some nights and some days for us. We had her for 2 nights this week which was a huge relief, and I feel much more refreshed for having had that break.
When we were home in January, we weren’t yet approved for more than brief nurse visits. There was some bureaucratic finagling which needed to occur between our primary insurance, the nursing agency, and our secondary medicaid before hours could be approved. So it was the first week of February before we got a nurse for a substantial shift, and we only had her for about three weeks before Dorrie got sick and we were back to the hospital.
This time when we came home we had joined the rarified trach and vent society, and so our nursing needs were even more specalized and harder to fulfill. But they had secured us a nurse for the daytime, 5 days a week, and assured us that they were looking for someone to staff nights. (They did eventually find a night nurse; that it took nearly 2 months from then for her to finally start working was not atypical as we shall see.)
For a few weeks, things went about as well as could be expected. The fact that I got sick helped a bit; the nurse was able to be essentially on her own with Dorrie for a full week while I stayed upstairs and tried not to contaminate anyone. And as time went on, I grew more comfortable with the nurse, she got more comfortable with us and with Dorrie, and Dorrie grew to know her.
She’d probably been working here for a month or so when she first mentioned that she’d need to leave early one day ‘to take her kids to the dentist’. (Note that she is a currently single mother with 4 children.) This was fine, and to be honest I felt and still feel that 5 days a week is a bit too much nursing for us. So any little breaks we could get were fine by me. In any case, she implied that this would probably be a monthly thing, and it certainly didn’t bother me any. Then one day she came and just looked terrible. I sent her home. I didn’t expect her the next day based on how she’d looked, but as, essentially, her employer, I did expect that either she or the nursing agency would call to confirm that she was not coming. This did not happen.
Things went on like this for a while, with several more illnesses popping up, and more and more ‘appointments’ coming up to make her have to come late or leave early. Most of these we heard about with less than 24h notice and some we never even heard about at all; we were just left to guess when she didn’t show up for work.
In July the nursing agency suddenly called to tell us that she was no longer available on Monday or Wednesday because she’d taken another case. Since she’d given us no indication of any such thing, I was surprised, but welcomed the opportunity to cut down our daytime nursing just a wee bit. I had been reluctant to do so before that because I -knew- she was a single mother, she got on well enough with Dorrie, and I was concerned that if we tried to go to less than full time she might not be able to stay. I had my selfish reasons, too: I didn’t want to have to break in a new nurse; I was used to the one we had.
It was not too long after the switch to 3 days that lack of attendance and lack of communication started to get downright silly, and I felt that I needed to start keeping track.
From August 18-October 14, she was scheduled to work for us a total of 23 weekdays.
5 days she called out with less than 24h notice.
5 days she was late or had to leave early without having arranged it in advance.
Of 6 weekend days she had also arranged to come for 4h, she called out twice and was late once.
Oh, she always had an excuse. Her life is filled with drama. House fires, ex mothers in law, children in the hospital, children missing school buses, evil landlords, crazy neighbors, traffic accidents in front of her house, floods, car trouble, misbehaving teenagers — it was like a train wreck. In fact, I’m surprised she wasn’t somehow involved in an actual train wreck. I began to seriously wonder how on Earth she supported 4 children when she could barely show up at work. Surely her paychecks were affected considerably by having not worked a full week in over a month and a half.
Even I was beginning to get annoyed. It’s not so much that I minded the lack of nurse, but what I did mind was the near constant changing of plans at the last minute. Those of you who know me will know how VERY MUCH this sort of behavior drives me mad. I like to plan out my days. Maybe not every little detail will go exactly as I want, but I at least like to know things like “another person is going to be in the house today” or “I won’t be able to do any work because I have to watch Dorrie by myself”.
But we limped along like this, because, as I mentioned before, I didn’t really want to have to break in another nurse. Even though I was getting annoyed, and even though I was becoming more and more panicked over the idea of her coming in all winter from her home with 4 germy children and exposing Dorrie to who knows what.
And then, rather suddenly, we got another one of those calls from the nursing agency. “She’s decided to work full time at another case.” they said. I was surprised, since, once again we had no inkling of her making such a decision. I decided that since she had said nothing to me, I would say nothing to her. She left on Thursday, called out on Friday, and I assumed that was the end of her.
Until she showed up on Tuesday morning.
We sent her away again, since we hadn’t been expecting her, and on Thursday the Case Manager came over and we all discussed the situation. She swore up and down that she had never said she was switching to the other case, that she didn’t WANT to switch to the other case, and that she fully intended to keep with the schedule she had. Even though I had been somewhat relieved to remove the threat of her germy children from my daughter’s proximity, I made no objections, since I had no guarantees that whatever nurse they came up with to replace her would be any better. What I did say was that if she did decide to switch to another case, we really needed 2 weeks notice of that fact. You know, like a real job, not one you can pick up and drop on a whim.
And so there we left it. Or so I thought. Because the next week we got the EXACT SAME CALL from the nursing agency.
Bob talked to our night nurse (who, after the shaky start had turned out to be quite reliable) to see if she might want to do some days instead. She agreed to try it out.
The agency announced surprisingly quickly that they had found someone else to do some nights for us, and we even managed to get them to come in and orient a couple of days later. The nursing schedule seemed to be falling back into place.
The first night the new night nurse was supposed to come, we got a call telling us “she might be coming down with a cold” so she wasn’t going to come, and would start the next week. We would hardly want her if she was ill, so we waited. On Monday we got another call telling us that the new night nurse had a “family emergency” and it would be a week or two before she could start.
I’m not holding my breath.
Since coming home at the end of April, Dorrie has left home precisely 3 times. Once to go back up to the hospital for Day o’ Appointments, once to go to grammy’s house for her birthday party, and now once to go to the pediatrician for her 1 year checkup.
The nurse who came in to take down her stats must have failed remedial baby measuring (her ear was caught in the head measuring tape, she was wearing a full diaper when she was weighed, etc) so I’m not going to bother to record the numbers.
We decided to delay the MMR vaccine this time, both because Dorrie is still recovering from her ick last week, and also because I think 2 shots at a time is enough for anyone. So chicken pox seemed more important, since there is actual potential for exposure if it came home on my clothes somehow. She handled the varicella and the hep A shots with minimal fuss, and did not even draw blood when she clawed at Bob’s chin. Overall she was well behaved, and we won’t count against her puking in the car seat before we left, puking in the car on the way there, or puking on the table in the exam room.
A pleasant title, no? But that is what we’ve been dealing with this weekend.
The heat wave that was rolling over the country finally reached us on Saturday and it’s been a sauna since. And it’s not even 90 here yet (according to the car). The AC is already having trouble keeping up with the heat generated by all of Dorrie’s equipment, and I shudder to think what late July and August are going to be like. For her part, Dorrie has been spending her day in the buff, and yesterday I bought a cooling pad which we can place in her bed to keep her back from getting overheated. No such luck for mom and dad, though.
On Friday, we switched over to NeoCate for Dorrie’s food. NeoCate is an amino acid based formula, meaning that it’s supposed to be even easier to digest than breastmilk and is hypoallergenic so it shouldn’t cause any kind of inflammatory reaction in the gut. Except that she’s been puking at nearly every feed, and we don’t know if it’s just because of the heat or because she doesn’t tolerate the NeoCate or because she needs a little longer to get used to it. We are going to try adding a bit more SimplyThick to it (the formula is much thinner than breastmilk) to see if that helps, but if she won’t keep it down, I’m just not sure what we’re going to do.
And to top it off the area around her G-Tube has been making belly boogers again. This is discharge and goo that comes out of the stoma and then dries around below the plastic tube and irritates her skin. It’s quite unpleasant and we’re not sure if that might not be contributing to the puking also. We’ve pulled out the bacitracin again to try and see if a bit of antibiotic might help matters.
In other news, the nurse did not bother to show up or call on Friday, nor did she actually contact the nursing agency as far as we know. So we aren’t sure what’s up with that. Especially interesting is that Dr. Optimist came on Friday again and naturally asked where the nurse was, so I told her. I’m not sure anything will come of that (more likely she will get in trouble as the agency knows she didn’t show — Bob called to find out if she had called in sick) but I am finding having the nurse here during the day gets more and more on my nerves as time goes on.