Bob had said he was going to write a post, and so I was waiting for him to do it. Then he never did. (You are not off the hook! :))
Anyhow, the appointments mentioned in my last post but one were less than great. Not because of any bad news, but because somehow, about 50% of the time we drive the 200 mile round trip to DHMC it feels like we’ve wasted our time. After a great deal of wrangling back and forth about whether we were going to see Dr. Optimist this time around, we finally agreed that it just wasn’t going to work out schedule wise. So the first appointment of the day was audiology.
The appointment was at 2:30pm, and we thought that would be perfect. Dorrie is usually awake at that time and in a good mood. Unfortunately, she did not enjoy the car trip in the least — unusually for her (and we’re hoping hoping not a sign of things to come) she was crabby and complained most of the way. She was even less thrilled when we had to change her diaper in the back of the car when we got there. Then, as we were loading her into her stroller, she decided to vent her ire by throwing up all of her lunch.
Luckily we managed to direct the puke away from her, so her clothes weren’t covered. The stroller got hit, as well as the ground in the parking lot, but really who cares about the parking lot? We mopped up the stroller as best we could, Bob and I had a very tense moment in front of the poor guy waiting so he could pull his car out, and we finally got inside. But after the car ride and then the puke, it was clear that Dorrie was already done for the day before anything had even begun.
She was crabby at the audiologist and refused to cooperate at all in the testing booth. She was in a foul mood and did not want to be in her stroller or at the hospital. It probably would have been wise of us to take her out of the stroller and sit her on our lap for the booth, but it just didn’t seem like a great idea at the time. So the audiology visit was mostly a bust.
Then we went to the ENT, where Dorrie’s nemesis, Nurse L awaited with the dreaded Synagis. Dorrie was horrified after getting her shots and would only be consoled by getting out of the stroller and sitting on daddy’s lap. And this was the bright spot of the day, because still so seated, she found being examined with the otoscope, a procedure which usually reduces her to tears, to be highly amusing. We found that the remaining ear tube, which we had thought was gone, was still in place — just completely clogged. But no immediate plans for new tubes, so that is fine.
And then we left. Getting into the car went better than getting out, but the ride home (my turn to ride in the back) was just as awful as the ride up. Dorrie, though clearly exhausted, refused to nap. Instead she complained and fussed and coughed the whole two hour ride home. She would be quiet (though not happy) only if sung to.
It was a very long day, and as noted before, it often feels like a waste to drive all that way and essentially learn nothing. Was it worth a four hour car ride, Bob taking a day off work, and exposure to a hospital to get a couple of shots of Synagis? I don’t know.
On the plus side:
We did not bring the vent with us at all and Dorrie did fine.
We were able to get in and out of the house in record time.
Done with Synagis, probably forever.
This coming week we have another appointment, but this one is closer. The state has something called ‘neuromuscular clinic’ at which kids enrolled in special medical services can come and see a neurologist, an orthopedist and uh, someone else, all at the same time. This will be the first time Dorrie has gone, so we’ll see how it goes. Her PT is coming with us. Later this summer we should have an eye appointment, a visit with her regular neurologist, and the developmental pediatrician. Plus her actual ped, who we tend to see only once a year given her numerous specialists.
And now… some pictures!
A while ago, someone had wanted to see a picture of her trach. I never posted the pic here, but I thought there might be some interest. Check out the notes on the pic.
Our OT lent us a weighted blanket a month or so ago to see if it would help with her sleeping. It has been very useful. Here we’re just using it for positioning, but she often sleeps at night with it on her legs and it does seem to help her remain calm.
For some reason she thinks having her snail push the monkeyball is absolutely hilarious.
Grammy was the one who invented the game.
In the mornings, if there’s no nurse (and sometimes even if there is), I’ll lay down with her after Bob goes to work. We can usually eke out a few more hours of sleep if I turn her around and hold her. I usually fall asleep myself at some point.
If it’s cold, I usually end up covering us up with the handy blanket that hangs around in the living room.
Where did Dorrie go?
The weather was great while I was in Pittsburgh a couple of weeks ago, so Dorrie went for a walk with dad and Grammy.
She saw far more of the outside than she’d ever really seen before. They walked all the way over to these little ponds a couple of streets over.
I wanted to see how she’d do on the sofa. The last time we tried sitting her anywhere (other than her own seats) was almost a year ago. She has improved a great deal, though there’s still a long ways to go.
Orange Dorrie and daddy watching tv together.
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.
I’ll try to get some pictures up in the next few days, as it’s been a while since we’ve had any of those.
As far as updates go, the second half of November was pretty busy, but stable from a health point of view. Dorrie got to meet her grandpa for the first time, along with his friend, and we had a nice little visit. It had been quite a long time since Bob had seen any of his family, since they live out in the midwest.
We’d also been scheduled to go back up to the hospital for an appointment the day before Thanksgiving, but based on what we knew, we were dubious that this appointment would be worth the 6 hours of overhead involved in getting us and Dorrie up there. It just took us 2 months of periodic requests to finally get the specialist involved to confirm that the appointment was useless — he still can’t do the test he wants to do because of one of the medications Dorrie is on.
So that was a relief. The last thing I want to be doing during cold and flu season is taking her out. I can’t help remembering that it was 2 days after her Synagis shot last February that she came down with the cold that eventually landed us in PICU for 65 days. I’d like to avoid a repeat performance.
Dr. Optimist and her nurse have come around to our way of thinking, because though they had originally (in August or Sept) said that we would have to come to the office for our visits over the winter, they changed their minds and today made another home visit. Dorrie objected mightily to the shots and screamed for quite a while after. But at least her exposure to exotic germs was kept to a minimum.
We finally also have a second nurse again. Our original nurse from back in February had some availability again and so she’s now coming on Monday and Wed during the day. I’m still getting used to her; we’d only had her for 3 weeks before Dorrie got sick, so I didn’t really know her all that well to begin with. My major peeve right now is that she speaks too softly. Now this might normally be a plus when dealing with babies, but Dorrie’s hearing disorder makes it difficult for her to distinguish what noises she should be listening to and what are background noise. So we try to speak loudly and slowly to her to give her some assistance.
Today is the last of Dorrie’s due dates, so there is no question over whether or not she’s one now.
She’s feeling a bit under the weather today, I think, but it’s hard to know exactly why. On Friday, we went up to the hospital so she could get new ear tubes placed for the winter. She also got an MRI, mostly to look at her ears, but Dr. Optimist figured if she was going in for that we may as well look at everything. And on top of that she also got her flu shot and her first round of Synagis.
The appointments were all rather late in the day, so we were worried that we were going to have to spend the night. I admit, I was freaking out about it; because of her respiratory status, she automatically goes to PICU where there’s a respiratory therapist always on the floor. Even though we’d been home from there for six months, I still feel myself tense up when I think about going back.
Fortunately, our visit to PICU was short. She was brought back still out from the sedative, but it was short acting and she had no anesthesia hangover like she’s had in the past. After a couple hours, Bob and I felt comfortable packing her up and heading home. We didn’t get home until about 10pm but I was so relieved to not have to spend the night at the hospital that I didn’t care. Our usual paranoid precautions ensued: Dorrie got a bath, we changed her ventilator circuit, and then both of us took showers too. No hospital germs can dare linger here!
It was midnight before we got to bed, but it wasn’t a bad night all the same.
I didn’t realize it had been three weeks since I updated here. Since Dorrie has been unsedated (she’s officially done with morphine and ativan as of early last week), the days I spend at the hospital have had approximately zero minutes of free time. Last week I didn’t even get out the computer when I was there by myself.
Her progress on weaning from respiratory support has been slow, but not horrible. As soon as she was no longer under the effects of sedation her need for a rate on the ventilator plummeted, as I knew it would. From there, though, things have been a bit slower. Right now, and for about the past two weeks, she’s been going back and forth between straight up CPAP of 8 and CPAP of 8 with pressure support of 8 and 3 ventilated breaths/minute thrown in for good measure. It’s not clear to us if the need for such a high PEEP is due to her being out of shape after her month of sedation/paralysis, due to the trach itself not being a ‘normal’ way to breathe, or due to general lung crappiness. Obviously the third problem contributes to everything in some fashion, but I’m hoping that the main problem is one, and as her muscles regain their strength, she’ll have less trouble.
For the past few days we’ve been doing CPAP for 12 hours and then going back to the rate of 3 for 12 hours. She seems to be tolerating this quite well, so hopefully they’ll be willing to try and go for all CPAP all the time some time next week, as long as her O2 stays as low as it has been. 35% may be high overall, but for Dorrie it is quite low, so we’re pleased with it.
On the agenda for next week is getting her switched over to the kind of ventilator/cpap apparatus we can take home with us, and for the ENT to come and try out some slightly longer trach tubes that he ordered for her.
So, here we are, three weeks into our neverending stay in the PICU.
It’s a bit late for a New Year’s resolution, but let’s have one for St. Patrick’s Day: we will NEVER EVER be going back to the local er again.
That said, for whatever reason, and I am not pointing fingers because I have no definitive proof that this was not somehow inevitable, we are… stuck. The PICU doctors have their protocol for getting children off of ventilators and Dorrie will not cooperate. Her dad and I are not doctors and though we can make suggestions, we are not always able to convince them to try them. They are obsessed with the ETT and because the incompetent local er cut it off so short, they are for some reason in terror that it will come out. Though as drugged up as she is and with the leak she has, I hardly think it would be the challenge they seem to think it would be to put a new tube in place. But I will save my gripes about that sort of thing for another time.
The long and the short of it is that they don’t know what to do and (IMHO) they are slightly paralysed by fear. Dorrie can be scary. So they turn to what they know, and several of the PICU doctors have been pushing a trach pretty hard for a couple of weeks now. They insist that as soon as it’s in, she will magically grow to love the ventilator she has always hated and all will be sunshine and roses.
I am skeptical to say the least.
But given their inability to get her a) awake enough to be extubated and b) somehow doing this without breathing over the ventilator (Okay, so it looks like I couldn’t avoid griping about this a little anyway, but really, I will save my venting for later.), short of insisting on having her moved to Boston, I’m not sure what other choice we have. And there are no guarantees that anyone in Boston would have a better idea.
Tomorrow we’re supposed to meet with Dr. Optimist, her nurse and (I assume) someone from the PICU to try and figure out what the plan is going to be. Part of me is still clinging to the hope that she’ll have a suggestion they’ll have to take seriously that will actually work, but I’m afraid we’re going to have to end up with the trach in the end.
I just don’t understand how we ended up at this point. She was extubated for four months — longer than she’d been on the ventilator, if only just. She didn’t just suddenly lose the ability to breathe on her own overnight, it doesn’t make any sense to me. I feel like somewhere or possibly multiple somewheres, there has to have been some kind of gross mismanagement or we couldn’t possibly have gotten to where we are now.
Probably time for an update.
It took a good week, but the staff at the PICU have finally managed to get Dorrie in a good, stable place. Monday last week, she was doing fairly well — oxygen at 40%, sats in the 90′s, etc. Tuesday, they tried to let her come out of paralysis, but she fairly quickly started trying to breathe against the ventilator, with the result that her sats dropped, and they had to turn her oxygen all the way back up to 100%. So they started the vecuronium and turned her back into Ms. Floppy-pants, but even then, they were struggling to bring her oxygen requirement back down — the lowest they got was 70%, and that did not last long before they had to turn it back up again. Finally, they decided it was time to try nitric oxide — and lo and behold, that seems to have done the trick. Right now, her sats are again in the high 90′s, and her oxygen is down to 40% again. They did increase the pressure on the ventilator a little because her x-rays had shown some collapse in her left lung, but her latest x-ray looked good, and we are back to the point where they are going to try to start weaning down her settings in order to get her off the ventilator again.
The main drama this weekend has been dealing with IV access. They had mostly been using peripheral IV lines with her, but they had decided that they needed to get a central line in. The attending decided to try for an internal jugular line, and was successful in placing it, but it did not last long — whether from moving Dorrie around, or from the fact that she’s been drooling a lot and the dressing came unstuck, the line failed yesterday and had to be removed. Then he tried to put in a line in the other jugular vein, but he apparently missed and went into the artery instead, so that had to be taken out too. So then their next option was to put in a subclavian line, but by this time Mom was disinclined to give them the chance to screw up another central line, and did not want to give approval for the procedure. However, the attending and the surgeon declared that it was necessary — there were no more available sites for a peripheral line, and so no other way to deliver the meds she needed. So, we let them proceed, and so far, the subclavian line has held. Hopefully, this one will work better than the last two subclavian lines she had, each of which failed in under a week.
In any case, yesterday’s drama notwithstanding, things are stable now. What’s more, the care team seems inclined to give her another day without any major changes, which is what we would prefer as well. And on top of that, the attending’s plan, after getting her ventilator settings to an acceptable level, is to start by letting her come out of paralysis, which is also what we want. (There must be some weird alignment of stars for our wishes and the care team’s plans to agree so well for a whole day like this.)
Over Presidents’ day weekend, Dorrie started to be a bit more swingy on her oxygen, and by Monday evening it was clear to us that she was coming down with something. After some back and forth with the hospital we managed to get Dr. Optimist paged so we could see what she thought we should do. (At the time, her heartrate was very high for no apparent reason, though she was still satting nicely and on not too much O2.)
She didn’t think there was immediate cause for alarm, so we stuck it out for the night, and sure enough, a few hours later Dorrie abruptly returned to normal. All the same, we went to the Ped’s office the next day. Lungs sounded clear, no sign of ear infection, no obvious reasons for concern. Ped deemed it probably ‘just a cold’. A phrase to strike terror into the hearts of preemie parents everywhere.
We wrangled Dorrie back home and spent the next few days trying to keep ourselves from needing to go into the hospital. Probably we did a bit too good of a job (and were too terrified by our last experience with the local er) because looking back, I can see that she might have done better had we managed to get to CHaD on Wed evening. But instead we stuck it out until Thu night when it was clear she was not doing too great — O2 was way up and worse, the extra O2 had really dried out her throat, making it even harder for her to breathe. At that point we spent quite a while uncertain of what to do. Would she start to get better if we could hold on through the night?
As she didn’t seem to be getting -worse- at this point, we decided to try and hold on and go to the Ped as soon as it opened in the morning. But Dorrie had other ideas and forced us to call an ambulance after almost making it through the night. Unfortunately, going in by ambulance means mom and dad have far less control over what happens and the local er freaked out again when she arrived. She was intubated by the time we got there (grr). A team came down from CHaD to rescue her (though not by helicopter this time — it was snowy), but this time, because it was possible she had RSV (though we figured highly unlikely, as she’d successfully battled the thing for 4 days) she had to go to PICU instead of the ICN.
And here we still sit, messing with the damn ventilator AGAIN, with a bunch of doctors who don’t really know her and -her- baseline — because her baseline is not the same as the baseline of your average 4 month old. Or even your average 4 month old preemie. Though we told them she probably didn’t have RSV, they chose to treat her initially as having it (until we were proved right when she tested negative) and so I sort of feel we lost last weekend where, after the acute phase of her issue had passed, she probably could have been extubated right away.
It’s been an exercise in frustration, really, trying to get them to stop pumping her full of sedatives at the least little twitch away from their accepted parameters. Parameters that are just not normal for Dorrie even in her best days. After I had a bit of a breakdown yesterday talking to the nurse who works with Dr. Optimist, she came down this morning to lay down some instructions for the people handling the case. (She used to attend at the PICU, but doesn’t anymore.) Hopefully that will see things improving.
Last Thursday was going to be a big day. We were going to head up to Lebanon early in the morning for appointments with: an endocrinologist, an otolaryngolist, an audologist, an eye surgeon, and just for good measure, Dr. Optimist as well. We figured, if we were going to all the effort to move Dorrie all the way back to Lebanon, we may as well get as much done as possible.
It should come as no surprise that Dorrie made her own plans for the day, which involved, as most of her plans do, throwing up. Mom was inside getting her ready to go while I moved the essential-but-not-needed-at-that-moment equipment — emergency oxygen and suction machine — out to the car. When I got back inside, she was mopping up Dorrie after she urped in her chair. Once Dorrie settled down again, we moved her and the rest of her equipment — regular oxygen, pulse oximeter, and various sundry baby items like diapers, wipes, bulb syringe, etc. — out to the car as well. We even made it out onto the highway and through the first toll booth before Dorrie urped again, and we had to pull over to help her recover. And then, her accomplice — the pulse oximeter battery — contributed its part to the plan by running low, with an hour’s drive still to go. Between all of these, plus a late start because the hospital could not say for sure whether or not we would have a bed for the night (they would need to keep Dorrie overnight for observation since she would be sedated for her audiology exam — only they did not tell us this until the night before), we finally decided the big pilgrimage to Lebanon simply was not going to happen, and we turned around and went home again. Almost all of the appointments need to be rescheduled of course, but hopefully she’ll be behaving a little better by then — and we’ll have a new pulse ox battery.
Dorrie was supposed to have a G-Tube placed today, but the Ped. GI specialist could not get one of the Ped. Surgeons to stand by on backup (they were too busy) so it was put off until Monday.
This gave Dr. ENT a chance to come up and take a look in Dorrie’s ears to see if he could see any fluid in there. Naturally she objected most strongly to his insertion of his scope thing into her ears and he was not able to get a very close look. So he proposed that he will look on Monday while she is sedated for the G-Tube procedure, and if he does find fluid/strongly suspects fluid, she will get some tubes in her ears to go with the one in her stomach.
Having had ear tubes twice myself (the first time at 8mos.) I can’t say I’m particularly concerned by this procedure, especially as I hope and suspect there have been advances in the last 30 years since I first got mine.
I am more concerned about the G-Tube, as I’m still feeling worried that we’re jumping the gun on it and she may get up to full PO feeds relatively soon. She’s made so much improvement with her breastfeeding over the past couple of weeks. I’m worried about messing with her stomach, that it will aggravate the reflux, and I’m worried about the procedure itself given her lung and breathing issues. Compounding all of this is the fact that the Ped. GI doc has STILL not been able to come and talk to me (though she made an unexpected visit on Monday — the one day in about 3 weeks where I had gone out — and talked to Bob). I am told today that she will probably be in between 7am and 9am on Sunday so I should be sure to be at the hospital during that time.