19
April
2008
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.
Posted: hospital crack, our little witch
15
March
2008
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.
Posted: hospital crack, moving forward... or not, our little witch
2
March
2008
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.)
Posted: hospital crack, moving forward... or not, our little witch
27
February
2008
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.
Posted: hospital crack, our little witch
18
February
2008
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.
Posted: hospital crack, moving forward... or not, our little witch
28
December
2007
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.
Posted: hospital crack, moving forward... or not, our little witch
27
December
2007
Bad News: Woke up this morning to find Dorrie’s nurse for the day was one I had been dreading getting again since she had her once back in July. We rushed over to the hospital to find that after being on a scant 90 minutes she had already decided to change the oxygen regulator (1L - 100mL) to a different one (200mL - 25mL). Her explanation: Dorrie needed more oxygen than the first one was giving. When Bob pointed out the obvious (1L > 200mL) she stared at it for a second, said “oh” and then SUDDENLY changed her tune. “The other one wasn’t working right.”
Whatever, lady. I notice there were no further issues with it after we made you change it back.
I’d grabbed a few granola bars as we rushed out in the morning, so I spent the whole day in the ICN after Bob had to go to work.
Good News: Apparently Dr. New Guy (who I quite like) has had some kind of issue crop up, so instead of him being here at the end of this week, Dr. Optimist is coming back early. Yay! We had several questions for Dr. Optimist and I’m glad that we’ll be able to deal with them before next week.
Posted: hospital crack, our little witch
25
December
2007
Not being familiar with other hospitals, I am not sure if the situation here is typical or not. But regardless of how common it is, it’s an enormous problem where we are.
There are five attendings who rotate responsibility for the ICN. When they’re on, they are the primary physician for every baby in the nursery (30 beds). None is ever on for longer than two weeks at a time and they’re often gone for 6-8 weeks before they appear again. While they supposedly consult with one another and pass along information on the patients, they all have their own opinions as to the best course of action, parameters for success and status of the babies. What this boils down to is that what Dr. This Week is doing may bear no relation to what Dr. Last Week was working on and that none of it matters, because as soon as Dr. Next Week comes on, the whole plan is out the window.
For babies who aren’t in the hospital for very long or who have issues with simple answers, this doesn’t really matter, but for a complicated and long term case, the consequences are different. There’s a huge lack of focus that filters down into the rest of the care team; the parents and the nurses are forced to play games to manipulate the situation; opportunities are lost and the hospital stay is extended. I firmly believe that this carousel of attendings contributed to her being on the ventilator for so long — it was not the only factor, but it had consequences.
But the lack of continuity isn’t just from the attendings. It extends all the way down the ladder. There are a half dozen NNPs who bear the primary responsibility for most of the cases (a rotating roster of Residents handle the rest), but no one NNP is in charge of a particular baby. A bare handful of the nursing staff have actual set schedules, while the rest of them are on at random and unpredictable times. It’s almost useless to pick out a primary, because it seems like half the time you don’t get them assigned anyway — or if you have more than one primary, you can pretty much guarantee they’ll both be on at the same time.
So twice a day we sit in tense anticipation to find out who our nurse for the next 12 hours will be. Will it be someone we don’t trust? Will it be someone we’ve even seen before? (Yes, we have been here five months and we are STILL getting nurses we don’t even recognize.) Will it be someone who hasn’t had Dorrie since August? And if any of those are true… we find ourselves in the fun fun position of trying to teach the nurse about our daughter and how best to deal with her without causing a meltdown on both sides. And then we get to wait and see if she’ll actually listen to us or fall back on her own habits, which may or may not be ideal for Dorrie.
Every day at rounds we sit and listen intently so that we can correct whatever misinformation is in the process of being spread today. It’s incredible how many details get messed up in the game of telephone that is the chain of command in this place. But this is the information that is being used to decide her care, and it really matters that it be known that she was at 1/10L O2, not 1/5L, she breastfed 4x, not 3, she had one major spell, not two. For example, when she was having trouble on the bottle and choking, we wanted her evaluated by the speech therapist. But somehow (and I know this is still the case in the minds of several of the team) her problem was communicated to the therapist as reflux (which she also has) and not swallowing related. Another week’s delay was the result. It is and has been exhausting to try to keep on top of all of this, but it has become increasingly clear that if we don’t do it ourselves, it’s not going to happen at all: no one else actually has her whole case in their head, because they are only involved with her intermittantly.
Posted: hospital crack, our little witch, trying to stay healthy