26
November
2010
Another long delayed update.
First off, as hasn’t been mentioned here, November is Prematurity Awareness Month. I don’t really hold too much with ‘awareness months’, because generally they’re about something that most people are already quite aware of, thank you.
But in this case, aware of doesn’t really mean understanding. So I thought I’d link to the post Eliza Grace’s mom Anne wrote earlier in the month. She does not overstate the situation; if anything, the impact can be far worse than described.
Now, on to less depressing subjects.
Nurses Eleven and Twelve are still with us and things are going good with them. We’re especially pleased to have a reliable competent day nurse (Twelve), as this is quite a novelty for us. In fact, it’s the first time EVER that we have had such a person in the over two years we’ve been home.
The agency had called a couple weeks ago to say they might have found us another nurse to cover one more night a week (a search that has been ongoing for months now). However, this elusive person was supposed to come for a meet and greet a week ago and this did not occur, so I’m assuming they have disappeared again in a puff of smoke.
* * *
At the end of October, we finally decided to take a big step and trial just how long we could go without any supplemental oxygen at all. It appears the answer was idefinitely, as we haven’t had to turn it on again since!
Dorrie had an appointment with Doctor Optimist the day before Thanksgiving, and she issued new orders to the nurses that we need only do spot checks with the pulseox during the day (mom and dad, of course, were long taking it off when it was getting annoying with all the movement-induced beeping). A couple days before that I had spoken to the RT from the vent-supply company, and we both agreed that it’s just silly to have giant tanks of liquid O2 sitting around evaporating just in case we need them, so they’re going to come and take the tanks away. We’ll continue to have pressurized O2 tanks in the house which we can use in an emergency and for long enough that if we needed longer-term O2 back they would have time to arrange a delivery.
* * *
Back at the beginning of the month, my mom’s sister was visiting for the weekend, so Grammy and Auntie Grammy came over and we all went out to lunch. Dorrie was extremely well behaved, and sat contently in her chair while we ate, just looking around at everything in the restaurant.
* * *
Dorrie’s school has been going okay, though November and December are both terrible months, with lots of random holidays and days off. The schedule, as a result, has been thrown into chaos with teachers coming randomly and needing to reschedule at different times. For the most part she hasn’t missed too much, but I’ll be glad when things settle down again.
Her new favorite activity is to draw (with a lot of assistance) with markers on a whiteboard. She gets very excited when she sees the colors appear on the blank white board. I was at work the first time they did it, but apparently she became very upset when they took out the eraser and tried to get her to help them erase the scribbles she had drawn. She’s definitely getting more opinionated about when she’s done and not done with an activity — more than once she’s gotten visibly upset when something she was still interested in playing with is taken away. And she’ll also get upset when she’s left with a toy or activity she’s tired of doing. Unfortunately, she’s still not able to tell us exactly what she wants, so we’re left with presenting her choice after choice until she finally settles on what she’s looking for.
* * *
We finally got her stander adjusted to accommodate her increased height, so she’s been trying to use that again. The stander is more difficult than the chair, since she has to do more work, and it can be harder for the person with her to engage her attention on an activity — a lot of the time all you can do is try to convince her to hold her head up.
Everyone keeps saying she’s improving, lifting her head up more, getting stronger. But there hasn’t really been any significant progress along those lines that I can see. Maybe I’m just waiting for a dramatic change to convince me, but we certainly aren’t there yet.
* * *
After not being able to work on it for pretty much the entire month of September due to everyone being sick, we redoubled our efforts this month to finally finish up the painting project in Dorrie’s bedroom. We really want to get her sleeping upstairs by the end of the month.
The painting project is pretty much finished now; maybe a tiny touch up here and there will be needed, but we’re going to let it sit and we can see what imperfections bother us and which ones we can overlook.
It came out so much better than even I had expected it would, and I knew (as Grammy didn’t) how good of an artist Bob was. He did a fantastic job sketching out the scene and then transferring the outlines to the wall. And an even more excellent job on the detailed areas that I didn’t even want to touch. Once the room is totally done (we’re now in the process of tidying and organizing the medical supplies) I’ll put up a better series of pictures.
Posted: moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
2
June
2010
Dorrie’s recently started to show a very strong preference and interest in certain television shows. All flavors of Sesame we get (Sesame Street, Play with me Sesame and Plaza Sesamo), as well as Angelina Ballerina are her favorites, and often cause her to absolutely crack up.
Even though she can be quite ‘chatty’ at other times, for some reason when she laughs, it’s very rare for her to make a noise. Instead, if she’s sitting in your lap you can feel her body shaking as she laughs and laughs.
(PS. The nurse didn’t show up again today. And they didn’t bother to tell us until we called to inquire.)
(PPS. The snotmonster seems to be nearly departed.)
Posted: nurse or no nurse, our little witch, trying to stay healthy
27
May
2010
Miss D has had a cold since last Friday night. Knock on wood, it’s thus far been confined to her head, and has not interfered with her breathing or oxygen needs. We have though gone through nearly 3 whole boxes of kleenex, and her poor little nose is alternately red or disgusting.
Aside from very poor sleeping (down for a few hours, up for a few, tired looks the whole day) and crabbiness last weekend, she seems to be handling it all right in other ways too. We have had a few minor puking incidents precipitated by gagging on post-nasal drip, but much fewer than you’d really expect.
In unrelated developments, she’s gotten a bit more demanding recently trying to get someone’s attention. Especially if she’s on her vent, she’s able to make quite a bit of noise until someone who may be occupied elsewhere looks over to see what it is she wants.
Nursing woes continue (the big surprise will be the day they haven’t). Our night nurse is retiring in July and they have yet to find any hint of a replacement. Our other nurse has apparently injured herself in some way and will be out indefinitely. We’ve had a new (day) nurse testing the waters the past couple of weeks, but he (yes, an actual guy!) can’t really do the schedule we want, so it’s a stop gap at best.
All of the people from the school have now paraded through. They’re supposed to have their reports ready for next Friday, when we have a meeting to discuss them. Then they will go off and spend 2 weeks writing the IEP so we can have another meeting to actually go through that. Hopefully that’ll be the end of the process.
We’re also in the process of investigating setting up a special needs trust for Dorrie. In order to keep her Katie Beckett medicaid waiver, she can’t have any assets in her own name. But if we set this up then money can go to the trust instead. (Or directly to us, which is easier, but doesn’t work for everyone.)
Posted: moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
28
April
2010
And the answer to the question of will the nurse show up is
NO
All those who had that choice in the betting pool may collect your winnings. :P
Which finger was I supposed to stick up, Grammy?
Posted: nurse or no nurse
27
April
2010
Did I mention that we’ve gotten rid of the overnight feeds? I’m sure I have, but it bears mentioning again because it’s so wonderful to THROW AWAY the stupid feeding bag at 9:30pm each night.
Puking is currently at an all time low. I’ll probably jinx it by saying so, but we’ve only had 4 pukies in the whole of April. 4!
Vent weaning continues to go all right. We’ve spent April at ~11 hours off a day, and once it turns to May we’ll go up to 12. We’re almost at the point where we can consider the logistics of having her sleep upstairs in her own room.
It’s already much much easier to move her around in the house. Last week we brought her upstairs to our room so we could tidy it up before a guest came on Friday. And then mom and I brought her upstairs on Friday so we could tidy up -her- room, which had somehow turned into storage central with piles of unopened and partially opened medical supply boxes everywhere.
Friday was quite busy, as I look back on it. The morning was spent at the elementary school where we had our initial IEP meeting. Aside from me and Dorrie’s 3 therapists, there were also the special needs preschool coordinator, a preschool teacher, visually impaired teacher, teacher for the deaf, SLP, OT, and PT. The meeting was mostly for them to get information from me and for them to go through the motions of determining that yes, there was a disability here and thus evaluations were called for. Over the next few weeks most of the school system people from the meeting will visit the house in conjunction with Dorrie’s EI therapists and do some evaluations. Then we have two more meetings (at least). One to discuss the findings and then one to discuss the actual IEP once it’s written.
Hopefully it all goes smoothly. Dorrie’s case is not particularly unclear — it’s mainly a question of how much they’re going to say they can provide vs. how much we want and how close that comes out to be.
Dorrie is doing well. Aside from going upstairs a couple of times last week, she’s also working with her stander again. It had been in desperate need of adjustment, and neither her PT nor I could manage to do it. Finally someone from the equipment place came and they had to practically disassemble it to get it to the proper configuration.
Now that she’s comfortable in the stander again, she’s back to enjoying it as she had been originally. She even discovered a new and highly amusing game with daddy, ‘disappearing pinwheel’. Daddy would wave the pinwheel around and then suddenly yank it down underneath the tray. It never failed to crack her up.
In nursing news, we got a second weekday nurse a few weeks ago. Or supposedly we did. She came one day, then had to take off the next week for some unknown reason. Then last week she just didn’t show up at all. Supposedly this was the agency’s fault for not calling us (…) but I’m still putting it 50/50 that she’ll show up tomorrow.
Posted: little fat fairy, moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
4
March
2010
I know I have spent a great deal of time in the past complaining about the nurses we’ve received.
It makes me sad, because the vast majority of nurses we had in the NICU (and especially Dorrie’s primaries and honorary primaries) were fabulous. Competant, reliable and trustworthy. I did not like having to leave her with them, but with only a very few exceptions, I did trust them (and the RTs and the NNPs and the doctors). Part of that was because I had to, but mostly it was because they had their act together. It was clear that they knew what they were doing.
Our first nurse when we came home post-trach, DramaNurse, was also pretty competant. All of her problems stemmed from her insane personal life; I didn’t have any fears about her ability to react and handle an emergency should it have arisen. Our original night nurse was wonderful — a combination of competant and responsible and not-insane that made me comfortable to be around her.
After DramaNurse left, we had a couple of very temporary nurses, one of whom we dismissed ourselves because we didn’t need her and one who came to orient and then fell off the face of the earth. Finally we got a more stable situation, AnnoyingNurse, who drove me absolutely bonkers but who obviously enjoyed playing with Dorrie and who Bob found tolerable. And so she stayed. After a while we rearranged my work schedule so I had to spend as little time with her as possible which improved things a good deal.
But she was still annoying. I decided that I would try not to write about her on the blog because I didn’t have anything nice to say, but she seemed like a very nice person — just one who grated on me. And she still did not project the air of ease and comfort that would have made me (both of us) feel able to leave Dorrie alone with her without Bob or I supervising. Since both our workplaces have been so accomodating, this wasn’t necessary, and so she remained.
Until last week. I am still not sure what exactly happened; the explanation we were given was entirely inadequate and did not fit the actual events. She came to work acting oddly, but not so oddly that I couldn’t pass it off as her usual irritating qualities. Then things got very very weird. The OT came and the nurse said she needed coffee, so I let her leave to go get some. Except she came back without any coffee. Puzzling. She said a few strange things and was acting bizarrely enough that the OT this week told me she had been very uncomfortable with the behavior she witnessed. Enough that she had considered calling the nursing agency and had spoken to someone at her work about it.
The OT left and the nurse began to make Dorrie’s lunch. It looked unmixed in the bottle when she brought it out and then she spilled a great deal of it trying to pour it into the bag for the pump. She wandered (and I do mean wandered) off to wash her hands off while I cleaned up the mess and actually got the feed started. I found that a lot of the food was still in the bottle and still more of it was left in the jars in the kitchen, as she had done a very poor job of getting the baby food out in the first place.
She returned and sat down on the mat next to Dorrie, saying nothing (unusual — she is a chatterbox). She sat there sort of patting Dorrie for a while while I watched getting more and more weirded out by her behavior. Eventually she decided to change Dorrie’s diaper. And here’s where the weird took a turn into freaky. She seemed to have lost the ability to control her hands. She pulled at the diaper tabs ineffectually for minutes, unable to figure out how to get them to close. Eventually, with the diaper still unfastened, she began to try and pull Dorrie’s pants back on. At that point I jumped in and fixed things, then asked Bob to come home. I didn’t know what to think. I asked her if she was okay and she was able to answer — she said she was fine. (Obviously untrue!). I thought she might have been having a stroke, but her speech was clear.
She began to try and read Dorrie a book and was stumbling through that when Bob came home. He had trouble getting her attention. At that point I was too freaked out and went upstairs for a couple minutes. Eventually, Bob and she decided that she would go home because she was worried about the ‘power being out’ (power had been lost in some neighboring towns). She managed to exit the house and make it to her car. It took her a while to get into the car, but once inside she didn’t seem to have trouble driving away. We were nervous about letting her drive and discussed if we should alert the police. In the end we didn’t, we just called the nursing agency.
In any case, after much discussion and the aforementioned inadequate explanation, she is no longer on our case. I’m pretty concerned that she’s still apparently working. There is absolutely no doubt in my mind that in the state she was in, she could never have replaced a trach and might not even have been able to fix a more minor problem like the circuit coming apart.
So now we will see what sort of new nurse we get.
Posted: nurse or no nurse, wtf, people
26
October
2009
No, none of us are sick — thankfully. However, both of our nurses are sick all of a sudden, which means that our normally well-organized weekly schedule is going to be thrown for a loop. The night nurse is only scheduled for Monday and Tuesday, so we are not really expecting to see her at all until next week. The day nurse is scheduled for Monday and Wednesday, as well as Thursday night, but we have had no word yet on what she thinks she has or when to expect her back. She was out today, and suffice it to say, if she has anything that might be contagious, we probably will not see her Wednesday either — and even if she thought she were healthy enough to come in, we would probably prefer she take an extra day anyway, just to be sure. So, the overall list of activities that this development will disrupt:
- Shopping Monday night
- Mom’s schoolwork Monday and Tuesday nights
- Our ability to get more than five hours of sleep Monday, Tuesday and Thursday nights
The only silver lining is that I have a major project I am trying to finish for work, and Dorrie usually behaves well enough for me during the night that I’ll be able to work on it while she sleeps. (Mom is the opposite way — she would prefer it if Dorrie were awake, since once it is late enough, Dorrie can usually entertain herself and let Mom do her work, whereas once Dorrie decides to go to sleep, she usually requires Mom’s constant attention.)
Posted: nurse or no nurse, our little witch
5
October
2009
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.
Me: Oh?
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!
Me: *stares*
Posted: medical morons, nurse or no nurse, our little witch, tales of interest
15
August
2009
Almost nothing at all happened the week before last. I’m not sure if I even got many new pictures to add. There was no word on the stroller, there was no advance on the trach collar, there wasn’t even any PT, since she was on vacation.
This week we finally got the ball rolling on several fronts.
Stroller
This has been an endless source of frustration for us. The stander was delivered to the equipment company in May and we got it in June. It’s now been 2 months since we got that. 2 months since we heard the stroller was approved. So this week we started harassing everyone: we called the equipment company, we called the PT, and finally we’re told it’ll be delivered on Monday. I’ll believe it when I see it, but at least we have a promise of action. I hope it’s as nice as I remember!
Trach Collar
After the fiasco a couple of weeks ago, the head RT came to our house and brought some additional materials and showed me how to set up the mask in a more reasonable fashion. Finally, last Wed, he and Dr. Optimist’s nurse came to the house and we were able to try it out. Dorrie was much calmer this time without the Moron Twins messing around with her ventilator and she handled it very well. She sat in my lap and kept an eye on the people in her living room while we had the mask on her. After we’d had that on for about 30 minutes, we switched her to a simple HME with oxygen attachment, and we were finally at the point where I wanted to be. Oh, it was lovely to have her attached to just a tank with a nice light tube.
We also got a chance to see how she would do just on room air — switching to the trach mask entails a near complete disassembly of the ventilator circuit, because we use the same humidifier. So we tried just pulling her off and letting her sit while the RT put it all together. She did great! I was nervous because the only other time she’s off oxygen during the week is for her trach change and she always drops like a stone. But apparently that has much more to do with the fact that she hates trach change and screams bloody murder when she realizes that’s what’s about to happen than it has to do with being disconnected from the oxygen source.
Our biggest problem with the collar (either way to do it) is suctioning. I don’t know what other babies are like, but when Dorrie is awake and active, she can need suctioning as often as every 5 minutes. This is generally fine because we have suction in line with our vent circuit — it’s never detached from her and remains as ‘clean’ as the rest of the circuit’s interior. The trach mask just has a hole where you can thread a catheter in and suction directly. The HME has a little flippy door where you can do the same. The question is what to do with that catheter when you’re not using it. If she only needed it every 30 minutes or so it’d be one thing, but it seemed like we were always pulling it out, and I get more and more tense because it just feels so dirty. Plus it is a huge pain in the butt!
So I think what we’re going to do is leave the inline suction on and attach the HME to the elbow of that. Hopefully it’ll work, because otherwise I think mummy is going to have a breakdown over the suctioning. We’ll have to figure out what to do with the suction when she’s on trach mask at another time. For now we don’t intend to use that much — disassembling the vent circuit while we’re by ourselves and trying to keep track of her is really not a great option.
It’s probably an even worse idea when we’re not alone and there with the nurse. I’m not going to get into too many details but suffice it to say she got very flustered on Wed and when the RT told her to reassemble the vent circuit after we finished with the trach mask it almost proved too much. She spent the rest of the day in a fog.
Dorrie with one of her preemie outfits.
She loves her tennis boys.
Posted: little fat fairy, moving forward... or not, nurse or no nurse, our little witch
23
May
2009
I am not sure that people fully understand how tightly scheduled our days are. Basically, our nursing agency has a real shortage of vent/trach certified RNs who are willing to do overnights. Probably because they do not pay as much as a hospital would nor do they offer benefits, but that is another discussion. All other nights we have to watch Dorrie ourselves. Over time her sleeping has improved, but she is still not a sound sleeper and she often needs suctioning during the night, not to mention food and medicine. So whoever is watching her does not get the opportunity for good sleep. Sometimes not any sleep.
A typical day looks like this:
7AM – morning meds
8AM – set up pump with some water
9AM – Dorrie wakes up, water finishes, switch oxygen monitor to other foot, clean her up, give inhalers
9AM-12PM – play with Dorrie, do leg and arm stretches, have her sit in her chair, work on hand and head control. If therapy is coming it’s usually during this time.
12PM – hook Dorrie up to pump for lunch
12:30PM – lunch finishes, disconnect pump
2PM – hook Dorrie up to pump for mid-afternoon snack
2:30PM – snack finishes, disconnect pump, throw away bag, hopefully time for a nap (Dorrie’s)
3:30PM – med
4:30PM – more food
5:00PM – more food done, clean bag
5:15PM – dad gets home from work
5:30PM – dad takes over watching/playing with Dorrie while mom makes dinner
6:00PM – start pushing 2oz water
6:30PM – mom and dad eat dinner while keeping Dorrie entertained
7:00PM – start getting everyone ready for bed. Dorrie’s bath, clothing changed, trach ties changed + neck washed, med due, get Dorrie’s bed out and set up
8:00PM – more food, dad goes to bed
8:00PM – 11:00PM – depending on her nap and mood, Dorrie goes to sleep at some point in here.
11:00PM – meds, wash food bag
12:00AM – start overnight feed
2:15AM – dad gets up, mom and dad change over
2:30AM – mom goes to bed
3:00AM – add med to feed
Add in there suctions on average every 15m during the day and once an hour at night, plus intermittant gas attacks once she’s gone to sleep. She finds farts amusing during the day but at night it’s the end of the world.
Basically, the choice was: we can both sleep in the same room with her and both be up and down all night, or we can split the night up and both of us get possibly less sleep, but uninterrupted. We went for the latter. However, as a result any little thing can throw our schedule off.
Last weekend was super busy. Not for Dorrie, but for mom and dad. Mostly mom. The end result of dashing around, getting 4 hours of sleep on Sunday and then working for 9 hours was that on Tuesday I got sick. A cold that had been nibbling at the edges of my stamina for quite a while finally got a foothold and that was it.
One of us being sick is no picnic, because we try to isolate Dorrie from the ill person. Since our day nurse had taken Wednesday off, that meant dad had to take the day off from work. He would have had to anyway, I think, because I was in no shape to look after her. But he did this after already having had to spend the whole night looking after her, which is an impressive feat of stamina. Grammy was nice enough to come over on Wednesday night and stay all day Thursday so dad could go to work and mom didn’t have to contaminate Miss D. She came back on Friday to do the same during the day there.
So I have been sick and miserable and guilty for being sick and miserable. Dad has been harried and worried about missing work. And any time something like this happens I wonder how much longer we can keep this up. It’s wearing. I’ve spent less than 200 minutes alone with my husband since January 2008 and the longest stretch of that was about 100 minutes on New Year’s 2009 when we went in the basement and watched a movie together while we had a night nurse.
The problem is that the nurses we have had recently are just not that great. Our current night nurse is an older woman and she moves very slowly. She knows what to do, but I have no confidence that she is actually capable of taking physical action quickly in an emergency. So dad will continue to sleep on the sofa on nights when she is here, just in case. And our day nurse, who I have complained about before, is just not a calm person. I do not trust her not to lose her head. She is too easily flustered in non-emergency situations for me to feel comfortable without having seen her deal with something important.
On top of that, it’s just so discouraging that Dorrie hasn’t made more progress. She is still not sitting up, and worse, she still has not really gotten the whole head control thing mastered. Tests have been done and there is so far nothing anyone can really point to to say that this is why she’s so far behind, and why she hasn’t made any strides at all toward catching up. As we move further away from the month she spent in the sedative coma, it’s harder to think that is the root cause.
Posted: moving forward... or not, nurse or no nurse, our little witch, trying to stay healthy
