8
July
2010
I haven’t posted too much lately on here about the puking situation, mostly because it’s been significantly improved over the past year or so. For the past 6 months we’ve often gone a whole week at a time without a vomit.
This week has been bad, though. Three days in a row of pukes. Today’s was the worst, as I’d taken her upstairs and I really didn’t want her to throw up on her bed or her bedroom carpet before she’d ever actually gotten to spend the night using either. So I ended up racing her downstairs with her in my arms and the puke cradled between us.
It was gross.
After removing her clothes and half of my own, I cleaned her up, but we ended up changing the trach once dad got home just so I could clean her neck underneath it (naturally, it all pooled in and around her neck.)
About a week and a half ago we upped her intake of goat kefir, and I’m wondering if that’s finally starting to catch up with her. If that’s the case, then we may have hit a wall in our efforts to get completely off the Neocate. We’ll see how the next week or so goes.
Posted: moving forward... or not, our little witch, trying to stay healthy
16
June
2010
After a hiatus of a couple of months, we headed once again to DHMC last Monday for our long awaited eye appointment. Plus many others.
Dorrie was very pleased to be in the car for the first half of the trip, and was all smiles. But she must have realized that nothing good can come of being in the car for a very long time, because eventually her mood deteriorated and the square tongue came out.
She calmed down once we got her out of her car seat, and was delighted to be in her chair. We proceeded to our first appointment of the day, dermatology. We had to wait a little while, but were then ushered in to a largish room where the nurse apologized and said ‘the appointment was booked wrong’. I was starting to debate whether I needed to be annoyed or concerned, but the doctor came in anyway and she was one of the people who had already seen Dorrie last year, so I’m not sure what the big deal was. She examined the thing on her arm and said even though it looked different it still looked like [some long word I still can't remember] — basically a calcium cyst. We’re to let dermatology know if she’s going to be put under for anything else, and then they’ll remove it.
5 minutes, in and out. Very swift. So upstairs we went for our next appointment. Which, surprise, was with Dr Optimist! She hadn’t been on our schedule at all, but we hadn’t seen her since Feb(!) so this was not a problem. I went off to have some lunch, because we were told we’d have to wait 30m before going back to a room. Typically, Bob and Dorrie were called back about 5m after I left.
I returned to find Dorrie, to her extreme displeasure, had been MEASURED. She was still calming down from this dread experience and Bob was trying to get in between her flailing limbs to change her diaper. We managed to calm her down enough to get the diaper done, and then had a much more calm weigh-in. (Stats: 35″, 28.6lb, which tallies almost exactly with the numbers we’d taken at home)
Then Dr. Optimist arrived, and Dorrie eyed her with great suspicion. But she still had her clothes on, so I think she felt relatively safe, and so the stethoscope was endured without much trauma. We talked about her meds and her growth and about weaning and what to try next. I wanted to try and wean oxygen during the day before worrying about the vent at night, so that’s what we’re going to do. Nurse L wasn’t there, so everyone wimped out and labs were postponed once again, until July.
Then the eye nurse came in and put drops in D’s eyes, which she did not like at all. But she got over it pretty fast when no further indignities were immediately forthcoming. Sporting her awesome sunglasses, we moved to a different exam room.
And then a miracle occurred. The eye doctor came in and Dorrie smiled. And she continued to smile and laugh and be perfectly happy to stare at him and through his little lenses and at his light. So unlike last time, where he managed a 2 second peek in each eye, just barely long enough to confirm her retinas were properly attached, this time he got to stare and stare.
What we learned: no cataracts or other issues like that. Cornea and lenses are clear.
What we didn’t learn: anything about acuity. The laser surgery left too much scar tissue on the retina for shining a light manually to let him measure the reflection and figure out what kind of correction she needs.
But he agreed that based on her enthusiastic response to the things he was holding up and her excellent tracking, she certainly sees, and probably sees pretty well. We’ll keep trying to get a more exact assessment.
So that was appointment three. We headed to yet another exam room for appointment four. Unfortunately, Dorrie’s eyes were still dilated and this new room had no dimmer, so we had to try and keep her sunglasses on. She didn’t like that much, as she was tired of them (and tired in general.) The last appointment was neuro, and she wasn’t especially keen to have her reflexes tested; it had been a long day of people looking at her already by this point.
Neuro didn’t have any super helpful recommendations. I’m not sure what I expected him to say, but it’s discouraging to have no particular idea of how to improve her delays beyond therapy therapy therapy. Which is ok but it’s slow and hard to get.
Dorrie was not impressed by Neuro at all, and while we were talking, she finally convinced me to take away her sunglasses. So she sat there instead with her eyes closed and very soon fell asleep. And then the second miracle occurred. She remained asleep as we left the office, rode the elevator and bumped our way back to the car. She stayed asleep as we stuffed her back into her car seat and got her buckled in. She slept while daddy made phone calls from the back seat. She finally woke up shortly before we stopped for gas, about a third or half of the way home.
Amazing.
Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy
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
3
April
2010
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.
Monkeys!
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.
Posted: hospital crack, moving forward... or not, our little witch, trying to stay healthy
17
January
2010
Last year for Christmas presents, I made a little book of 2008 with some text summarizing each month and lots of pictures. I made the same thing again this year, and now that nearly everyone has seen their copy (just one left to send out), I’m free to recycle the text in a lovely year in review post!
(For the interested, here’s a page that shows a preview of the books from 2008 and 2009. Ignore the bits about what to buy and just click on the ‘preview book’.).
January 2009
The year began with not a bang, but at least something nice: Dorrie had officially been home more days than in the hospital.
The rest of January was fairly quiet. Nursing coverage was stable and everyone remained well. Dorrie was teething quite a bit and her face was pretty chapped from all the drool that she kept getting all over her chin and cheeks.
She had started to show more interest in her toys, finally, at nearly 18 months actual. There was still not much effort to play with them beyond getting them to her mouth (and that was pretty hit or miss) but she knew they were there and that she wanted to eat them.
This month also saw Dorrie’s first real encounter with snow. I put some in a bowl and brought it inside to show her. She was highly suspicious at first, but curiousity got the better of her and her hand drifted toward it. Much to her dismay, it was extremely unpleasant to touch and worse, it stuck to her fingers making them cold!
February 2009
Dorrie’s interest in her toys continued to develop this month, as she suddenly discovered the joys of mobility. Still unable to sit or stand or crawl, she found it was possible to push herself around on her back. It was slow going, but it allowed her to see her small world from a new perspective and chase down toys which had gone out of reach.
We found this out one day before her bath, when we gave her a Christmas toy we’d held back — a Fisher-Price Little People airplane. Given her fear of large toys in the past, we were worried that she would not enjoy having this one. But I also thought she might like to bite the people, so we brought it out and stood the people nearby. The plane we put a safe couple of feet away. But she spotted that plane and lunged for it, taking us all by surprise.
She also started to show some interest in books, as we began to read more of them to her. It still wasn’t clear just how much she was understanding, but she definitely enjoyed the experience of listening, looking at the pictures, and being given attention by whoever was reading. She also enjoyed ‘reading’ on her own.
And, most exciting of all, she suddenly learned how to hug.
March 2009
March blew in with woes amongst Dorrie’s staff. Her overnight and sometimes day nurse had a family emergency and had to stop working most abruptly. It took us nearly a whole month before the agency was able to dig us up a new night nurse.
Otherwise, the month itself was was pretty average. Dorrie had her sleeping issues, which were compounded for us by the lack of night nursing. Toward the end of the month, she finally started to wean the PEEP on her CPAP — one tiny step closer to getting off the vent.
April 2009
April was another healthy month. Easter was uneventful, and Dorrie was in a mood to perform, so spent the day lifting her head up and scooting around on her back. She was also introduced to a new friend: Ducken.
While we all soon got tired of hearing him sing his chicken dance song, she found him endlessly entertaining. The only problem was that his activation button was too difficult for her to press on her own, so we had to keep pressing it to make him go.
Toward the end of the month, Grammy finally got one of her fondest wishes and was able, with daddy’s assistance, to take Dorrie for a walk in her stroller. The two of them packed everything up and rolled out, making their way down to the mailboxes and back. A few days later, we also dragged Dorrie and all her stuff closer to the sliding glass doors so she could see outside. Neither time was she especially enamored of the sun, though she did not find it as fearsome a foe as the dreaded SNOW.
At the end of the month, Dorrie celebrated an entire year home from the hospital.
May 2009
The month of May was a sickly one around here. Dorrie got an ear infection at the beginning of the month, and then mom got sick in the latter half of the month, followed by dad. Dorrie didn’t entirely escape either, and was placed on antibiotics.
Because of all the illness, there wasn’t too much else going on. Dorrie held steady and got through her infections with no major setbacks, and that was all we could hope for.
We were able to place some orders for new equipment for Dorrie this month, to give her more options for sitting and being supported in new positions. She also continued to show an interest in watching mom and dad eat and drink, especially in our cups. But this didn’t translate to wanting actual food or liquid for herself.
June 2009
The first bit of new equipment arrived in June: the stander. This is just what it sounds like, a contraption that allows Dorrie to stand up straight. She’s held in with straps and padding and has a tray upon which she can have toys while she’s busy standing up.
She also continued to outgrow her orange Tumbleforms chair which we had borrowed from the OT. But the new seat we had ordered did not arrive this month, and so we had to keep squashing her into the small one.
Due to the antibiotics in May, June was a retchy, pukey month compared to others. We made little progress on the nutrition front at all. A couple of small steps were made on the respiratory front, however, and by the end of the month, Dorrie was on a PEEP of 5, which is about as low as the vent can handle.
July 2009
Dorrie did a lot of standing in July, working on keeping her head up and getting used to the sensation of having a bit of weight on her legs. It soon became clear that with the assistance of her arms, she was actually quite good at keeping her head from flopping forward. Her endurance improved rapidly and soon she could spend an hour or so in the stander.
Her digestion also returned to normal, and so at the beginning of July she began to get some pureed food through her tube instead of formula. She started with prunes, and when those were a success, we added carrots and pears. She also started using her mesh feeder a little more frequently, after she figured out how to start scraping bits of carrot off of a larger chunk. The feeder kept the scraped bits from making her gag. She was also more agreeable to tasting other foods, as long as she didn’t have much to swallow.
She proved she had made some additional progress when, as the weather got hotter, she was able to endure her clothing. The cold mats and ice packs remained retired and naked baby did not return.
Dorrie spent her second birthday with daddy and grammy, because mom had to be out of town. She was forced to endure many forms of torture, including ink on her hands and ice cream on a spoon. Going down a slide also proved to be traumatic.
The next week, Dorrie received some sparkly purple hearing aids. When they’re first turned on, they play a little tune, and she found the sound of it hilarious.
August 2009
In spite of our intentions, Dorrie, since she lives right in front of the tv, sees a lot more of it than we would like. She began to get into Sesame Street over the summer, though it had always bored her before. She’s also a fan of anime, particularly “Tennis no Oujisama” (The Prince of Tennis).
We were able to add additional foods to Dorrie’s schedule during the month of August, as green beans, pears and turkey were proved tolerable. The introduction was going slower than we had hoped, but she was tolerating the real foods wonderfully.
Dorrie’s chair finally got to the equipment company at the end of July, but we weren’t able to get it adjusted and here until the second half of August. But what made this arrival even more exciting was the fact that we were finally able to get Dorrie off the vent for small periods of time each day. She was still attached to oxygen (along with her sat monitor and suction), but no more vent! We began with 30 minutes, then quickly went up to an hour. Things were astoundingly quiet in the house with the vent turned off.
September 2009
Now that Dorrie was finally spending some time off the vent and the weather was still good, it was time for a road trip. My grandmother, Dorrie’s only still living great-grandparent, had never yet been able to see her. So when mom’s work plans fell through on Friday when dad had already taken the day off, we decided it was time to go visit.
Grammy came with us, as an extra driver, Dorrie wrangler, and because her car was larger and more comfortable. We set out around 10am and drove to Clifton Park through several surprisingly violent rain showers. Dorrie was an extremely well-behaved little girl. We brought her new chair with us (great-grammy’s house has a wheelchair ramp) and were able to leave the vent in the car while we went inside. The cats were out of the way and we all gathered in the bright front room of the house.
Dorrie wasn’t entirely sure what to make of her great-grammy, but she seemed more curious than scared or upset. She got held, she played on the floor a bit, and then it was time for us to go again. We piled everyone and everything back in the car and then drove back to NH. It was a really long day, but it went as well as possible.
October 2009
The swine flu was in full swing by October, and vaccine was still nowhere to be found. We were on high alert for illnesses all month long, but fortunately they were avoided by us — the nurses weren’t so lucky and both were down for the count.
Dorrie finally tried out the swing, companion to the evil slide. The swing was less traumatizing, and she tolerated it for some time before she was taken out.
She also got another new chair, a bumbo-esque chair meant for older children. It has a high back and arms, which gives her a bit of support and helps her to sit in it with minimal assistance. It’s much easier to get her in and out of than the full blown rolling chair, though it’s probably not nearly as comfortable.
Dorrie began to get more and more opinionated over the fall, preferring certain books over others, certain tv shows over others, and wanting everything just right. One of the things she decided was just right was dad singing her to sleep. Mom, not so much, though she did find it amusing to listen to the alphabet song.
November 2009
In November, Dorrie’s sleeping schedule deteriorated to new levels of inconvenience. After growing more and more difficult to coax to sleep every night, both she and mom decided independently that they weren’t going to deal with that together any longer. Dorrie started staying up until it was daddy’s turn to get up, reinforcing his identity as Sleepy Guy.
But a girl who stays up until 2am can hardly be expected to wake with the dawn, and so Dorrie began to learn the joys of sleeping until noon. Since the morning was previously her time of greatest activity (due to it also being her time of empty stomach), this started to cause problems. Her use of her stander and her chair plummeted during this month, as she would wake up just in time to eat her lunch. Several times she had to be woken up to participate in PT or OT.
The introduction of real food continued, and in November Dorrie added sweet potatoes, apples and corn to her diet. The RD finally arranged a visit, and we started to come up with a plan to eliminate the nighttime feedings.
Dorrie was increased to 6 hours a day of time off the vent, which she took in stride. She also finally received her first cuffless trach, and so every other week was suddenly much more able to find her voice.
After some more ridiculous vaccine drama, the month ended with Thanksgiving and the return of the Christmas tree to Dorrie’s living room.
December 2009
December started off very well: Dorrie officially rolled over for the first time, from back to front. She had managed to flip herself quite a few times, but this time was different because it was very clear that it was deliberate. She pushed herself up onto her side, and investigation revealed that she was looking quite pleased with herself. So after making sure none of her tubes were going to get pulled, she was let to do what she wanted. Slowly, she eased over the rest of the way to her stomach. And then, the clincher, she struggled until she pulled her trapped arm free so she was fully flat.
It also seemed to us that she was beginning to understand some of the signs we’d been working on with her. After many months, she seemingly understood the sign for ‘book’ and for ‘all done’.
The rest of the month was quiet. Quieter than we’d hoped, actually, as we’d been anticipating a visit from Grandpa and Uncle Steve that had to be postponed due to illness in WI.
Dorrie was increased to a total of 8 hours off the vent each day.
As can be seen in the pictures from this month, Dorrie’s diet, heavy on orange veg, started to lend a distinct hue to her skin which became very visible around Thanksgiving and after.
Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy
29
November
2009
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.
Posted: medical morons, our little witch, trying to stay healthy, wtf, people
28
June
2009
This week was our first full week with the stander. We’re still working on perfecting how to keep her legs fully supported — the pads that go around the knee are great, but the leg grooves(?) are much larger than her legs are, so the pads don’t actually hold her in place. So far it seems like shoving some rolled up blankets in between the pad and the knee may work to fill up the extra space. More importantly, Dorrie continues to enjoy going in the stander, at least for the first few minutes. Her enthusiasm definitely wanes after that, though she is at least stoic and endures until we take her out.
The PT told us that her stroller/chair had been approved by insurance, so now we’re just waiting for the equipment manufacturer to get it shipped out. Woot! In anticipation, we’ve rearranged our entire living room to better accomodate the increasing amount of large stuff we have to have around. We’ve also had to discard the area carpet we had in there; somehow some pukie did not get cleaned up 100% and began to stink and worse, it looked like it was growing something!! Gross! Bob cut out the spot with the carpet knife, but a hole in the carpet just looked too trashy for words. So we got an el cheapo replacement at Home Depot. Hopefully next year we’ll be in a position to replace these floors. The tile is really hard.
Dorrie has been a very boogeriffic baby the past few weeks, dating back pretty much to the beginning of May, when she had an ear infection. Then both mom and dad got sick, and Dorrie seemed to have a lingering ick herself. A couple of weeks ago her eye suddenly got very gooey, so we were alloted some drops by the ped. The goo did not completely go away and then suddenly it was coming out everywhere — her ear, her nose, her suctions. (Gross again). We started another course of eye drops and somehow it seems to be helping everything, so I’m hoping we’re finally seeing the last of this ick. Now if only daddy’s cough would go away.
Dorrie has made some significant progress with her arms in the past month. She is much more able now to direct her arms to where she wants them to be so that her hands make contact with desired objects and people. It’s clear it still takes her a lot of effort and concentration to do it, but the movements are much more deliberate. She’s enjoying a toy a brought back from IKEA — one of those things with looped wires holding wooden beads to move back and forth. Trying to get her hands and fingers on the beads is very good practice.
Posted: moving forward... or not, our little witch, trying to stay healthy
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
19
January
2009
It’s been quite a while since an update. I was hoping that perhaps Bob would write one, but he’s been pretty busy.
For me, we’re in a part of the year that has a lot of very bad anniversaries for us. The first time Dorrie stopped breathing at home, the helicopter ride, the second time, the cold she got, the month she spent sedated in the PICU, getting the trach… none of these are things I want to remember, but of course, it’s impossible not to.
Alexa and Anne have recently made some posts that touch on the same subject. With Dorrie still on the vent, it’s hard not to (and perhaps appropriate to) feel that we’re still in a very precarious position, healthwise. She’s really only been sick sick 4 times in her life, but 3 of those times she nearly died. So we scrutinize all of her secretions, watch the sat monitor, watch her breathing, feel her forehead, and obsess about whether or not she’s coming down with something. I tense up when I hear the nurse cough in our house, wondering whether she is sick and has now spread germs to Dorrie that are going to kill her.
The 13th was the anniversary of Dorrie’s first visit home after being discharged from the ICN, and on the 3rd or 4th, she had officially been home for more days than she was in the hospital. As of the 17th, she is 18 months old.
But something in me hesitates to write about good things like that because I’m afraid to jinx it by talking about it. Once we get through March, I’m hoping I’ll be able to relax a little bit more.
Posted: moving forward... or not, our little witch, trying to stay healthy
4
December
2008
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.
Posted: hospital crack, moving forward... or not, our little witch, trying to stay healthy