Maria Rose

Maria’s got another respiratory infection as well as some kind of breakout in her diaper area. She tested positive for both strep and staph infections. She’s on antibiotics, steroids and three breathing medications. She’s out of school for the rest of the year–which is more dramatic than it sounds since the year ends in a couple of days. We don’t know if she’ll be going to summer school or not.

Maria got home late last night. When Maria finally got the OK to leave, the nurses were laughing at how frantically Manolis was loading everything up. One nurse said, “I’ve never seen anyone pack up so fast.” They practically sprinted out of there. Maria slept well last night and it still pretty low key this morning. Needless to day, no school today.

Maria has started eating and drinking, though not as much as the doctors would like. She is still throwing up a bit, but that may just be from feeding her too fast or too much. The fact she’s taking anything orally is a good sign. She may be going home tomorrow (Thursday).

I spent the day with Maria in the hospital yesterday. She was very pale and obviously felt really bad. She wouldn’t take her thumb out of her mouth and I got only one weak smile during the whole time I was there. Every time I’d move her, even something as simple as raising the head of the bed, she’d start dry heaving.

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.

I’m typing this on my Acer tablet and it wouldn’t let me finish the last post… so anyway, she puked, so they put an IV in, which was only mildly traumatic (Richard rocks), so the doc just told me they’re going to admit her to finish IV and work on keeping something down. She said they have a bunch of kids in the hospital with vomiting and fever, so it’s probably just stomach flu. Sigh…

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!

All day Saturday Maria was whimpering and vomiting and had a fever. In the evening I talked to Nanny Sue who said, what if it’s appendicitis? So I called her pediatrician’s cell (Maria’s, not Sue’s), and she said give her tylenol and if she continues the whimpering, take her to urgent care. She got better, then around midnight got worse, and was like crying kinda and bringing her legs up to her chest. So I woke Manolis and we came to the emergency room. Got here before 1:30am and we are still here at 10am.

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

Maria has a new home physical therapist (PT) who she saw for the 1st time last week. She’s very concerned with how Maria’s left leg is–it turns out, she doesn’t like to bear weight on it, it doesn’t straighten out, it seems to be painful at times. She’s also concerned with her scoliosis and thinks both need to be monitored. The school PT has also been mentioning Maria’s leg and wanted to see the xrays. They weren’t planning to take xrays today, but since we’re all concerned about how things are progressing, they xrayed her spine and hips, and gave me a CD.

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.

Recently we got back from a 10-day cruise on the Norwegian Dawn from Miami to several islands in the Caribbean. Maria and Manoli and I went, of course, and we took Nanny Sue also. We stopped at a small island just off the coast of the Dominican Republic, Tortola, Barbados, St Kitts, Antigua, St Maarten, and St Lucia (not in that order), as well as 3 days at sea. We met several parents who have children with cerebral palsy (not with them); when they saw Maria, they really missed their children. Noreen was a hostess at the restaurant where we ate dinner every evening. She’s from the Philippines and she’s away from home for 10 months at a time. Her daughter is 10. She’s going home to see her in a month. Then there was the French Canadian who has a 14-year old daughter who she says looked just like Maria when she was 7. Somehow she got pictures of her daughter at 7 and 14 and gave them to me. People often say they know someone who looks like Maria, but holy smokes–she was like Maria’s twin!! (of course, I think Maria’s prettier, but she probably thinks her daughter is, too). The resemblance is remarkable. We met a woman named Carolyn on Barbados who is an empath and can tell Maria has a good, strong spirit and is an old soul, loves pink, hears everything, should drink coconut water, and will walk and talk when she’s 10. Awesome!

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!

I’ve got a couple of crappy cellphone videos of Maria on her Freedom Concepts bike. This first one is a little frantic because I have to keep running up to steer the bike since the stupid thing pulls to the right, has since the day we bought it, and Freedom Concepts hasn’t ever bothered fixing it even though we told them about it. (I’m hoping Freedom Concepts follows the backlink, sees this post and says, “Wow, we have an unhappy customer. We should fix this like they asked us to a couple of years ago.”)

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.

There hasn’t been an update in a while because Maria has been on vacation. She, Cathy, Manolis, Sue just got back from a cruise to the Caribbean. I leave it to Cathy to fill in all the details but Maria had a lot of fun and everyone on the ship loved her (of course!).

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!