They weren’t trying to feed her since she can’t keep anything down. They were giving her Pedialyte through the g-tube, and IV fluids. They gave her medicine at noon and she almost immediately vomited it all up. Later in the day they switched to half Pediasure and half Pedialyte and she seemed to be tolerating that well. Still nothing orally though. They say they want her to start eating or drinking before they will let her go home.

She was very dehydrated when she went to the ER and was still dehydrated when I was there. That makes the nausea worse, which makes her eat/drink less and vomit more, which makes the dehydration worse and so on. They were mostly focused on getting her hydrated and stabilized.

They don’t know what it is. They’ve done some blood tests but they are looking for major stuff. The resident said there are so many different stomach flu bugs you can’t really test for each one. Nausea and vomiting are symptoms of, well, almost everything so it’s hard to pin down a diagnosis. It’s not the shunt, but that’s about all they know.

Back when she had her hip surgery back in July she tested positive for MRSA (antibiotic-resistant staph). Once you are on the MRSA list everyone freaks out. She has to be in special clean rooms, the staff has to put on gowns and masks to come in, she can’t leave the room, and so on. To get off the list you have to get two negative MRSA tests. The problem is we’ve never been able to get the hospitals to retest her. Cathy and I were being pushy about it but nobody seemed to know what to do. Apparently the testing protocol changes so often the hospital staff doesn’t keep track so they were calling Infection Control to find out what to do. I suspect we’ll have to keep nagging to get them to follow through.

We have no idea when she is coming home. The doctors aren’t even making predictions. All we can hope for is she will abruptly start eating and drinking and then maybe they can let her go.

At least she’s finally asleep. Wish I could get a wee nap… I think manolis is going to spend the night with her tonight. If I let him. Sick kids should be with their mama usually. Damn it’s freakin’ freezing in here!

They xrayed her tummy, did a head CT and shunt series of xrays to rule out a shunt problem, urine sample to rule out urinary tract infection, blood for electrolytes. Gave her anti-nausea med with pedialyte and when she was almost done, puked

He said that 5 or 6 years ago, they wouldn’t have even done surgery on her left hip–it was that bad. He had to do a lot with it, then there was the break on the same side, so that set her back too. He’s quite happy with the xrays and how it looks, how it’s healing. All he said is, be cautious and keep working with her. He’d like to see functional range of motion, doesn’t need to be more than that (range of motion for the sake of flexibility, or something like that–in other words, we don’t have to overdo it, do just enough). As far as getting the metal plates out, he said we should do it within a year or two, so it’s not critical to do it exactly in mid-July this year, which is good. I think. We’ll see him again in early August or so and see how things are.

Her scoliosis has increased to 45 degrees (last number I recall was 15 degrees –yikes). He said with all she’s been through the past year, he’s not surprised. I’d like to know if there’s any way to reverse that. I’ll ask the PT. We’ve got an appt to get a new scoliosis vest — just in time for summer, yippee.

Oh yea, he said in time, as Maria grows, her left leg won’t be rotated out so much. That’s why he does it like that. He set it so the bone goes firmly into the hip socket, which is more important than the rotation now. So the surgery was more to prevent future pain and other problems, rather than being so great right now.

Thursday is back to the pulmonologist.

We swam with stingrays in Antigua, fed green monkeys in Barbados, and took a train ride around St. Kitts. We laid on the beach and swam in the ocean and ate well and went to most of the shows on the ship and made a lot of friends. Oh yea, and we got totally ripped off by Simone in St Maarten when she braided Maria’s hair, then Sue’s, charging “only” $2/braid; which isn’t bad unless it’s 37 braids in Maria’s hair or 22 in Sue’s… Rip off. But it looked so cute on Maria (really really bad on Sue, but good on Maria!) It was a nice, relaxing (sorta) trip. The ship was nice, the crew was fantastic, the food was good. Oh yea, and Sue won $238 playing Deal or No Deal. I’m glad we got an accessible room–Maria’s wheelchair didn’t fit through the regular cabin doors.

Here’s a tip for anyone traveling with a child in a wheelchair–don’t take the primary wheelchair, take a back-up one, preferrably one that folds. The airlines and buses and taxis are hell on wheelchairs!! Fortunately, after washing the cushion covers and getting the wheelchair tuned up by the place we got it from, it was almost as good as new!

MariaBike1

The second one is more stable but badly lit since the sun was behind her. I found a wider sidewalk so the bike’s steering wasn’t a problem. She was at a standing start and I waited for her to start pedaling on her own before starting the video so there is no Uncle Andy interference at all in this one.

MariaBike2

The videos are in a weird format I’m not familiar with but they should play when you click on the links. I wanted to do some kind of cool embedded video but that means uploading them somewhere like Youtube and I didn’t feel like messing with that.

Maria’s been doing great on the bike, pedaling a lot and going faster than before. She’s been taking more steps when we walk and carrying a lot of her weight, which is good for her feeble Uncle Andy’s aging back. I wish the state would get us a new walker because I think she’d do great in it. The current one is so small we don’t even bother trying her in it anymore.

We had an interesting incident the other day. I had Maria out on the bike and some guy drove up and asked if I was her father. I said I was her uncle. He pushed $60 in my hand and said, “Give this to her family with God’s blessing,” and drove off. Nice to see Maria’s finally earning her keep!

Her breathing treatments have been pretty ridiculously involved but the new schedule is much more reasonable–just one treatment per day, with more if she starts showing symptoms. We can live with that.

In addition to losing her PT, her OT is making noises about the number of sessions Maria has missed. The central office is starting to enforce the cancellation schedule that says if you miss 4 sessions in one quarter then they can dump you. Maria just missed four sessions and is going to miss two more later this month. I see their point–there is a long waiting list and lots of kids in need–but it’s frustrating since it’s not like it’s Maria’s fault. I got the impression that it really comes down to the fact they are trying to get rid of the kids on DDD and treat more kids with private insurance. Less paperwork, less bureaucracy, and better rates. The OT loves Maria, of course, and will do everything she can to keep her on but it’s not up to her. Again it would be very hard to replace her because not only is she great, but it’s hard to find therapists with open slots outside of school hours.

I know I’ve said this before, but enough drama for a while. Let’s get back on schedule.