Becca's Schedule - December 2016

Becca's had a hard six months. Something happened over the summer that changed things in a way we haven't been able to figure out. She chokes and coughs more, and has a harder time getting clear. At first we thought she had a cold, but it wasn't like her other colds because she didn't get really bad and she could still interact with us (when she gets really bad her body is so worked up that she can't even seem to answer yes/no questions with her eyes successfully, she just breathes heavy junky breaths over and over until she gets better). We thought maybe it was allergies or something, but it didn't go away.

We've met with the pulmonologist, talked to GI and a couple other doctors but nobody had a good answer. We thought maybe it was due to her scoliosis but the ortho doc did X-rays and said it's not bad enough for that to be causing it yet. We had a percussion vest already because Becca was diagnosed with bronchiectasis (basically a widening of the airways that results in more mucous and easier infection) earlier in the year (she was sick and we were hoping to get a vest to help her out the person reading the x-rays may have known the answer we were looking for and helps us out a bit, we're not completely sure), so they told us to start doing that twice a day and also give her albuterol twice a day. We'd done some nebulizer stuff before, but that took about 5 minutes each time, so the inhaler route sounded a lot easier. I'll post more about that if I remember to.

Anyway, here's the schedule:

4-5am: Wake up. Paula gets up with Becca and does her inhaler and percussion vest for 12 minutes. Originally we were doing this at 7am, but it seemed to be making it even harder for her to not choke on her breakfast so we moved it earlier. Now she sits in her chair afterward and listens to music, listens to an audiobook, or watches her fish tank. If she gets really junky and coughs a lot we put her back in bed so she can clear up a bit.

7am: Siblings get up. They're allowed to get up at 7 and they go hang out in Becca's room until it's time to get up for breakfast.

7:30am: Brian gets up with Becca and gives her breakfast. We ask if she's feeling up to eating by mouth and if not we just do formula and medicine. If she's up to it she picks a flavor of yogurt and I scoop out like three or four spoonfuls into a bowl and mix in some finely-chopped oatmeal to make it a little thicker. On a good day she'll get six bites before she starts coughing too much. She chokes a little on about half the bites, but we try to let her decide when she's done. We have a fan next to her now because when she gets coughing on her bites she gets really sweaty.

8am: Medicine, formula (compensating for how much or little she eats) and miralax in water.

8:30am: School? About half the time Becca is up to going to school. The rest of the time she's got too junky a cough or is too worked up to ride safely on the bus. If that's the case we get her out and let her lay on her side to try to calm down or get more clear. Sometimes she feels up to letting Paula drive her to school, sometimes not. If she stays home she usually falls asleep and sleeps until around 11am.

School: School's about the same schedule. They make sure to get her in her stander. Interestingly enough, they say she's clearer in her stander than in her chair. I don't think a lot of academic work is happening right now, with how hard it is for her to communicate and everything else they have going on in their classroom. She's up and down at school. If she stays home, Paula tries to get her up in her chair when she wakes up and see how long she will tolerate it. Usually she'll stay up for three or four hours before she starts to get junky again. Sometimes it's more like an hour or two, just depends on how bad she is. Paula tries to do things with her, like read a book or sometimes get out of the house for a minute, or watch a show. She talks to her a lot while working around the house too.

4:30pm: Home from school if she took the bus. If she rode the bus in the morning she's usually good to ride it home too. Sometimes Paula gets a call asking to come get Becca if she's having a harder day. Becca's teacher is very patient and supportive, and tries to keep her there as much as she can because they have a good team and can work with her and keep an eye on her, but sometimes she just gets really worked up or her breathing gets too raspy. After a while we do a diaper change. When she changes positions she sometimes does this rhythmic muscular spasm for anywhere from 2 to 15 minutes. It takes away her focus and makes her sweat a lot and really wears her out. It's actually been around for a few years, it used to just show up when she'd get sick or sleep deprived, but it visits us a couple times a day lately.

5:30pm: We still try to do school time. Some days she can interact really well. It's a bit more one-way than is used to be, though, because her answers come in spurts. When she's anxious it's hard to get a response out of her, her eyes roll up and she can't seem to make eye contact. So we watch videos and talk about types of clouds and try to read a word or two. There were times when we could try to answer some harder questions or try to read tricky sentences if I mixed it in with easier fun stuff, but it's been hard to push lately, it's more been about maintaining and just talking about interesting topics. When she's really bad we're lucky to get one or two questions out of her and I'm not sure how much she's following, so we do art things. It's hard because it's clear she wants to engage, and when we work on bigger projects she's proud of them, and sometimes she'll seem so out of it but somebody will make a witty joke and she'll chuckle at it, so I know she's still there, but I don't know how much she can really take in.

6pm: Albuterol and compression vest treatment for 12 minutes. We sing songs and get the other kids to join in.

6:30pm: Dinner. We blend it up just like before. Some nights she says she doesn't feel safe eating (I originally wrote "doesn't want to eat" but that's not true and you have to be specific with how you ask her. She always wants to eat so if you ask if she wants to eat she'll say "yes/no". You have to ask if she feels safe eating. She's very literal, just like her father :-) ) so we just do formula. If she wants to eat she'll get a max of 10 bites in before the bad coughs show up, so we supplement with formula. She usually has to lie down again after dinner, even if she doesn't eat.

7:30pm: Get ready for bed. Melatonin, trileptal and more formula. In the past we've given her two 1mg dissolving melatonin pills by mouth, but when she's bad that causes some really bad coughs and chokes, so we crush them and do it through her feeding tube if we need to.

8pm: Bed. She usually does lots better once she's asleep. Some nights she sleeps on her side if she's had a rough day, it's easier for her to keep herself clear that way. Over the years she's gotten different night lights and stuffed animals from people, so she usually has a few good choices for how she wants to fall asleep :-).