28
April
2008
So, tomorrow morning we’re headed home. I guess it goes without saying that I’m looking forward to it. While on the one hand it means that we’re back to doing all of her care, back to sleeping in shifts, and back to the rigmarole of packing her and 60 pounds of gear into the car every time we have to take her anywhere (which will happen about once every week or so for a while, I have no doubt), I have a feeling that she’s going to do a lot better this time around. For one thing, we’re out of the cold and flu season, so hopefully keeping her healthy will be easier. For another, we no longer have to live in terror that she’s going to go into a death spell from having a tiny bit of reflux, if the number of times she’s thrown up while laying on her back here in the hospital without problem is any indication.
Mind you, I’m not quite as excited about the new equipment we’re going home with. The vent itself isn’t that awful, but it’s definitely bulky — it’s about the size of a laser disc player, I would say. But with any luck, we won’t actually need it for that long — once Dorrie’s pressure need comes down further, we can try her out with just a trach collar, at which point we’re more or less back where we were before as far as equipment is concerned.
Speaking of the trach, while on the one hand the extra care is a nuisance, I do still feel that it will be worth it to be able to do things with Dorrie that we were afraid to do before. She can try out her little chair swing, she can spend time sitting up in her Boppy, we can let her enjoy her tubby time more… except for the fairly heavy plastic tubing connecting her to the vent, we can pretty much start doing more normal baby things with her. Definitely worth the few minutes per day it’ll take to wash her neck and change her trach ties, and occasionally change and clean the trachs themselves.
Of course, there is still the drive home to contend with. We had a dry run yesterday of getting her and all of her equipment down to the car and put in, so we know everything fits, as well as what is involved in getting it there. The only thing we didn’t get a chance to do was try her out in her car seat again, to see if she would tolerate the ride. However, she has tolerated sitting up for long periods since we got here (the OT had her sitting in a foam chair much like a car seat, and she liked it so much she slept in it for much of the afternoon), so I don’t expect any problems.
Posted: moving forward... or not
25
April
2008
Quite a few people have asked where the name Dorrie came from. I put up a page about the books in which it originated.
Posted: our little witch
25
April
2008
I’m sitting here in the hospital room with Dorrie on her CPAP next to me and her dad asleep on the bench/cot with his.
Should I feel left out?
Posted: we interrupt this blog
19
April
2008
Way back when Dorrie was still in the ICN, we had our first adventure with trying to get her in to see audiology after her hearing screening tests would not give us a result. It took us a great deal of wrangling to get down there at all, and of course, the trip did very little since she was upset and uncooperative by the time the test was ready to occur. Our second test was a few weeks later, and sedated, after snow allowed some cancellations. At the time, the results were inconclusive, and the main result was that she had tubes placed in her ears when she got her G-tube put in.
She was supposed to have a follow up hearing test about two weeks after the tubes had gone in, but we weren’t able to get another appointment before we went home. And then our second appointment didn’t happen because Dorrie was not feeling like going in the car on the day it was to take place. So since we’ve been here and she’s been on the road to recovery, we’ve been harrassing our doctors to harrass audiology to try and get us in before we leave once more.
It seemed like it might not happen, and we’d even gone so far as to make a regular appointment in June, but suddenly on Thursday they called up and within an hour someone was here to try and repeat her ABR test. We gave her a bunch of versed to try and quiet her down enough to do it, and for a while it seemed like she wasn’t going to let us, but at the last possible moment she went to sleep and the test was successfully performed.
The result was that the ABR patterns observed suggest that she has auditory neuropathy (also called auditory dis-synchrony). Unfortunately, that’s all they can tell from the patterns; they do not know how to read them to judge if she has any associated hearing loss, the severity of the AD/AN, or anything else. The diagnosis is very specific and yet extremely vague at the same time — it boils down to: we’re pretty sure she can hear sounds, but we don’t know how well she hears them or when she does, what she hears (ie, if what her brain is told is what the sound actually was). And we can’t really find out until she gets old enough to indicate these things to us.
It’s possible an MRI of her ears might give us some more information, but we haven’t talked to the ENT yet (he was on vacation last week) to hear what his opinion about physical causes might be. We’ll have a follow up visit with audiology over the summer sometime to see if we can get any more information. She may be old enough by that point to at least look in the direction of sounds to let us know she’s hearing them.
Posted: moving forward... or not, our little witch, trying to stay healthy
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