Archive for June, 2014

10 Years Old!

Tuesday, June 24th, 2014

Today is Maria’s birthday. I woke her up to drag her out of the house for her 3rd excursion or so in as many weeks. I took her to the OdySea Mirror Maze in Scottsdale, next to the Butterfly Wonderland. It was the perfect thing to take her to, because it was something totally different than she’s ever done and it was short.

First we went into the OdySea Aquarium office to get passes to the new aquarium that isn’t yet built. We have Lifetime passes to the Butterfly Wonderland, and I wanted the same to the Aquarium, because it’s supposed to be super awesome. They’re much more expensive, so I just got a lifetime pass for myself and an annual pass for Maria. The special is you get 2 years for the price of 1, so that will be pretty good for a start. Can’t wait!

Then we went through the maze. Since it’s a weekday and it was early, we were the only ones in there, which is good because it was very tight quarters for a wheelchair and I wouldn’t want kids running by and into Maria. The guy was super nice, gave us a discount and also gave us passes for the laser maze– you know, like you see in the movies where they’re trying to steal something and they have to pick their way through the laser beams. That would be super cool for able-bodied kiddos. It would be a great place for a birthday party!
Mirror maze
I think she enjoyed the maze. I was getting a little worried we wouldn’t find our way out, and then, there was the exit. Whew! Got some cool pics. Wish I’d taken more!

Elisa (school aide) came to see her with flowers and a nice book. DDD (state agency) came to see her at 3 for our quarterly visit. Manolis got her a cake from Nothing Bundt Cakes — only the best cakes ever! I got her a huge bunch of balloons. She loves balloons! BalloonsHer play date with her birthday-twin-best-friend, Sydney, was cancelled because they’re sick. So nice of them to not want to get Maria sick. Sue came over with cute clothes and a Hello Kitty mermaid, so cute! I think she had a grey nice birthday. She actually ate her cake without choking much, which is shocking because she has been choking a lot.

10 years old. Wow.

Doing Better

Friday, June 20th, 2014

I saw Maria yesterday and I’m finally starting to see some improvement. Her pain is less and she is going longer between doses of hydrocodone and Valium, as long as 12 hours or more. She definitely still has pain and muscle spasms but not as badly as before. Because she’s less drugged, she’s more active. She was trying to move around, roll off the mattress, get to toys and so on. She’s taking a little bit by mouth now — some applesauce, a few ounces of milk thickened more than normal — though she’s still getting most of her stuff through the g-tube. Her color is better and she’s generally a bit happier and more vocal. She’s less pale. I noticed she has more bowel sounds now; she had almost none during my last few visits. She’s still a little grumpy but that might just be because she misses seeing her friends at school.

Speaking of which, she’s had at least one play date since school ended and she has another one for her birthday. She’s going to be TEN in a few days. Double digits, baby! The doctor approved her for swimming so Cathy is going to try to take her to the special needs pool. It would be nearly impossible to get her in a regular pool safely, but they have a lift there. They are also thinking of letting her sleep in her new bed for the first time this weekend. Up until now she’s been sleeping on a mattress in the living room, and Cathy has been sleeping next to her.

Home for a week

Monday, June 9th, 2014

Maria has been home for a week and I’ve only seen minor improvements. I suppose I should go back to the July 2011 blog entries to see how the hip surgery healing was, in comparison. Of course, I’ve all but blocked it out (except of course for her hospital stay when the IV placement and pain was such a big mess. That I remember like it was yesterday. I still have PTSD from that).

She does seem to be just a tiny bit more bright-eyed the past day or two, so that’s something. Yesterday, I felt like she needed her meds every 4 hours (Rx says every 4-6 hrs). I’ve been trying to stretch her to 6 or 7, but no way yesterday. Today’s better, although the worst thing today and yesterday is she gets phlegm stuck high in her throat and can’t or doesn’t cough so it’s hard to breathe and it freaks her out and she almost panics. Not fun to watch. Like Andy said, we have a doc appt this week, so we will see what they think!

We slept in my bed last night, so I got a much better night’s sleep, and she might have also. That won’t be possible when manolis works (he’s off Sunday and Monday). We went to The Dump (a store, not an actual dump) and bought her a new bed yesterday, one that we can use the lift with. More $ than I wanted to spend, but it seems very strong (not like the Ikea bed she now has). So thanks to Craigslist, I’m in the process of selling her old one before the new one is delivered Friday.

I tried to use the lift by myself a day or two ago and I think I hurt her, she sure was hollering; the placement of the sling didn’t quite seem right. The
new lift is SO much better than the original one they sent us. It can lift more than 300 lb. maybe we should try it. Haha

Since I slept, I actually got a full day’s work done (telework). Thank goodness my supervisor is so understanding about this!

Recovery Update

Saturday, June 7th, 2014

Maria’s still on the road to recovery. I saw her yesterday and she’s not a happy little camper. She still seems to be in pain and I think she’s getting muscle cramps. She is getting hydrocodone and Valium for those respectively. She mostly just sleeps, which is good because that lets her heal faster. She’s not taking anything at all by mouth so we are grateful for the g-tube. She is also really constipated, a combination of the drugs and not moving at all. When she’s awake she absolutely wants to be in physical contact with someone at all times. She hates being alone, which is understandable. She had some kind of weird lip swelling this week that seemed like a drug reaction but the doctor wasn’t too concerned and it went away. She might have just smashed her lip or something. She still likes sleeping with her mouth pressed against her hand or anything else. Cathy was worried because Maria is having trouble controlling her hands, like to get her thumb in her mouth, but I’ve seen that before. She’s just exhausted and drugged and so on. She’s sleeping in the living room and probably will for a while but eventually she’ll head back to her own bed, which will be tricky because the lift they got won’t fit under the bed frame. Right now it would be nearly impossible for one person to lift or move her safely while that massive incision in her back is healing over. She goes back to the doctor this week so we’ll see what he thinks.

Maria’s Home!

Tuesday, June 3rd, 2014

As Andy mentioned, the last several days have been up and down, as you can imagine. After her “rock star” performance through the surgery and the day after, we went through several days of too low blood pressure, too high heart rates, a fever the night before she was supposed to go home (urinalysis showed no infection), an X-ray of her belly because it was so distended and starting to get rigid (“just” stool, nothing more traumatic; I, of course was imagining more surgery for a bowel obstruction), really good lung sounds throughout her visit, more feeds, less feeds–just the usual ups and downs of a hospital stay for a special girl who just had major surgery.

Maria sitting in her wheelchairThey did fantastic on the pain control for the first few days, then with her bowel issues, they were backing off the pain meds, which is not the way I would have gone. That’s why I finally wanted to get out of there, no more morphine pump, and no more oxy and Valium given like clockwork, so when Maria is writhing in bed waiting for meds, that’s not ok. Since we’ve been home, I’ve been trying to keep her comfortable, but right now is the first time she’s sleep peacefully since we got home at 5pm–so it took more than 12 hours. Yes, I am so sleepy.

Diaper changes are still very challenging. We are waiting on a sling for the hoyer lift that will actually work for a child who just had major back surgery. Should take a couple of days. And the guy who is not a PT who has not been very effective or patient with us is coming over again to adjust Maria’s wheelchair. We lucked out on Sunday, the PT who visited knew how to adjust Maria’s chair, so she adjusted it well enough to get her home, but it’s not right yet.

Somehow we have to get Maria in the shower today. Not sure about eating. For now I’m feeding her through the gtube–some formula; some spinach-mango-yogurt-protein powder concoctions for fiber and vitamins; and some probiotic drinks, trying to get those bowels moving again. I’m also giving her poop goop and doing some Jin Shin Jyutsu flows on her.

So we are all about comfort, pain control, bowel movement, and then we can figure out how to move her off the mattress on the floor. I know getting her up will hel the bowels and lungs too, but it will be tough before the sling comes…..Maria laying on the mattress in the living room

She’s Home

Tuesday, June 3rd, 2014

Maria got out of the hospital last night. I don’t know much more than that but wanted to let people know she was back home and apparently doing great.