New School Year

So yesterday was the first day of school for the new year.
Technically C. is in 7th grade and attends our town's middle school. C. seems happy to be back; she is a girl who likes her schedule, and summer is a bit disjointed with a few weeks of camp, a few weeks of vacation, a few weeks of staying home with Dad and/or her nurses. Of course sleeping in until 9AM or later was nice. Here is the new school routine:
5:30am 1st alarm, I get up and feed her breakfast: pediasure via g-tube. Then I go back to bed.
6:15am 2nd alarm goes off. This time I am up for good. Time to start waking C. Roll her over onto back and check diaper (usually dry in the AM). Prepare AM medications. Get clothes ready. After C has had a few minutes to get used to the idea of waking up, I begin getting her dressed and up into her wheelchair.
By 6:30/6:40am she's usually out in the living room, watching TV. We give her AM meds, perhaps a little more formula. Start putting on her AFO's.
6:50am and we're waiting for the bus. Supposed to come at 6:55, but these first two days it has been about 10 minutes later and I'm not complaining; extra time is good.
Then C is off to school for the day. More on her School routine later. She returns home around 2:45pm. If I'm not working, I am often here, but generally her nurse meets and retrieves her from the bus. They usually go for a walk in the neighborhood, although C has been so tired these first few days, the nurse has been taking her straight to her room for a little rest. She chills out to a movie or music for a while before going on their walk. Sister L, starting 2nd grade this year, is home around 4:00pm and generally either HPEmom or I are home by then.
So far, so good. No vomitting at school or at home, just the usual gagginess and congestion.

Discomfort

One of the more difficult things to deal with in raising a child who cannot express herself in words, is when she is in apparent pain or distress. Last night C clearly flinched and cried a cry of pain a few times when I tried to reposition her in bed. But it is so hard to tell what/where the pain is. Is it a hand or foot? Arm or leg? Is it the G-tube? When I physically manipulate her arms and legs I was unable to elicit the pain again, which makes me think it was more internal. At any rate, last night was an uncomfortable might for C. She actually slept OK, just cried out a few times. She had two large BMs yesterday, but still was having some gas at bedtime, so perhaps something bothering her gut. No vomitting which is always the big telltale sign that something is truly wrong, but we'll have to watch the pain meter.

Blood in stomach

So we've had a few days now where C has been gagging alot and coughing up lots of mucous and phlegm. It gets worse in the afternoons as she gets tired, and is particularly bad whenever she has to lay on her back - like for changing diapers or clothes. On Wednesday afternoon (2/4) she gagged and spit up a large amount and the emesis was dark brown. We checked the residual in her stomach and drew out lots of dark brown liquid. It is not unusual for C to have streaks or brown gobs in her residual, and I normally associate it with her needing to have a BM. This was different - the entire stomach contents was dark brown. Nurse says it is most likely blood, so the question is where is it coming from. We know C has a history of gastritis from stomach acids irritating her esophagus and it could be she is having a flare up of the inflamation. We did not rush to the doctor, but took a wait and see approach. The brown residual was gone by 7pm. Overnight she slept OK but seemed to be grinding her teeth a lot. Yesterday morning when we got her up for school and checked residual it was brown again and she again was having lots of gagging. The school nurse called in the afternoon to say C was drooling excessivley, gagging alot, and just not herself - even whimpering a few times. They vented her g-tube and drew out lots of frothy mucous. I went to pick her up rather than chance her throwing up on the bus. At home I checked residual and there was no blood. She had a decent afternoon, was happy and enganged with the nurse. Lots of drooling, tongue thrusting, and some gagging but not excessive. So as of this morning she is back at school. Residual is still clear of blood. There are so many things that could be bothering her. Perhaps she has a sore throat (although nurse said her throat looks OK). We know some 12-year molars are coming in and perhaps they are bothering her. Or one of her recent spit ups caused the inflamation in her esophagus to flare up. Probably all of these things. But she's not in obvious pain and as long as the brown/blood goes away, I'm not too worried. Will keep the Dr. Sahgal appointment today for Botox and perhaps another baclofen adjustment.

Medicaid and stuff

Morning began with C. doing a lot of gagging. Shortly after giving her meds and getting up in her chair she got the red-eyed, nauseous look that says "I'm gonna lose it!" Which she did. Only about a 1/2 cup worth, but then we were faced with the question of whether to re-do her medications. Ended up giving about a third of a dose of the DDAVP again, just to be sure. The log says this is the first vomit since Jan. 20th. Not bad in our world.

Saw this news item today about Medicaid. I'd just like to mention how in a case like mine, Medicaid is absolutely vital. As I mentioned here I am currently out of work and seeking a job. But given the difficulty of finding childcare for C, getting her enrolled in Medicaid and the HomeCare Waiver program to provide nursing care was absolutely critical to me being able to commit to a job when (please, oh please!) I get an offer. So here is a case where you can look upon Medicaid which pays for nursing care for my daughter as a true economic stimulus - it will allow me to look for and accept work, pay taxes, receive an income so we can resume our rightful place in the consumer society.