Archive for July, 2010

Not much news

Friday, July 30th, 2010

Quick update to say things have been blissfully uneventful. Maria’s been fine. We are still trying to get the EEG glue out of her hair but it’s really just a matter of waiting for it to flake away.

She’s getting her first big girl tooth, but her new dentist wasn’t particularly helpful with advice on things like what we should do when her baby teeth get loose. With her history I could see her choking on a tooth that’s fallen out.

Cathy has her surgery in a few days. Rosanne is coming in to help her out since Cathy won’t be able to pick up Maria for at least two weeks.

Home from the PEMU

Friday, July 23rd, 2010

Maria got home from the PEMU last night. She’s been energetic and happy today, clearly glad to be home.

She never did have a seizure during her stay. She had a number of behaviors as they cut off her medication, including the open mouthed thing we’ve always assumed was a seizure, but the neurologist said there were definitely no seizures on her EEG. There was one sort of “near seizure” but when he reviewed the video there were no behaviors he could point to. She can still get overwhelmed by things, and that leads to unusual behaviors like the open mouth, but these are either deliberate or muscle-based, not brain-based.

However the EEG clearly showed she is a seizure patient so he restarted her meds. He replaced the Trileptal with Keppra, a drug he said is more effective on her type of seizures. Unfortunately there is an insurance glitch so the pharmacy gave Cathy a small, short-term prescription until that can get worked out. They can’t give small amounts of liquid – it’s either the whole bottle or nothing – so they had to give us pills. Of course Maria can’t swallow pills, plus the pills are 500 mg and she should be taking 200 mg, so we’ve been messing around with grinding them up and figuring out how to give the drug to her.

Right now the biggest problem is how to get the glue out of her hair. The EEG glue is pretty nasty and she has big clumps of it. They recommended olive oil, mayonnaise or peanut butter. I tried the olive oil and it helped some but I had to grease up her whole head to do it. She still has some large patches even after all that. I think it’s going to just be a matter of waiting for it to flake out on its own.

Now we have to wait to see how the new medicine works out, which of course delays yet again those new medicines prescribed many months ago.

Medication Malfunction

Sunday, July 18th, 2010

A very bad thing happened last night. Maria got an extra dose of one of her meds. I thought I’d already given it to her and said something, but the nurse assured me it was time. Like the sleep-deprived mom that I am, I gave it to her and then called Andy to confirm that she did indeed have her evening dose. Why didn’t I call him BEFORE giving it to her? Dunno? I called the nurse into Maria’s room and told her what happened, she checked the chart, and saw that I was right. It’s along story why it happened — the usual perfect storm where 5 things in a row go wrong. She called the doc who said she’ll be ok and we’ll cut the dose a bit in the morning. She had to write an incident report. This morning the doc apologized on behalf of the hospital and said he hoped it didn’t damage her career. Yikes!!! It is pretty serious business….

I slept in Maria’s bed most of the night. I think she felt like crap and wanted me near. Neither of us got much sleep. Her heart kept racing and setting off the monitor alarm. The doc assured me the extra med didn’t cause it. So, why only last night then??

This morning the doc said Maria still hadn’t had any seizures, which he said gives him more good info. We agreed to halve one of the meds and see what happens. He’s not crazy about that drug, he would have given her another one mor targeted to her type of seizure. I want to know what to tell the teachers when they say she’s having several seizures daily. I want to know what her seizures look like today. I want to know what to do when Maria exhibits her behaviors or seizures or whatever. All these answers take time. We will tackle them 24 hours at a time. To an untrained eye, Maria’s eeg looks different to me today than yesterday. We’ll see what he says tomorrow.

I was planning to go to work this week and have Andy or Sue watch Maria during the days, but if I don’t get any sleep, I don’t know how I can work, and if she does start having seizures, it’d be best if I were nearby.

Day 2 of PEMU

Saturday, July 17th, 2010

We’re at the end of our 2nd day at the pediatric epilepsy monitoring unit. So far, no seizures. I’m not surprised because Maria hasn’t had any seizures since “The Big One” or “The Event”, as it’s sometimes called. Her neurologist has seen inter-ictal spikes, which just basically means she’s prone to seizures, as I understand it. He doesn’t want to stop her meds, but I hope he decreases them some because we need to see what her seizures look like now, and if she never has one, what are we doing here and how long will we need to stay?

Maria wasn’t at all happy Fri morning when we came. She hasn’t been eating or drinking so great, but she did love the Taco Bell bean burrito and her usual organic milk-Pediasure mixture I brought her this eve. I hope she lets me get a little more sleep than last night. Between the bed being extremely uncomfortable and Maria continually grabbing wires — I got very little sleep! The one time I did sleep she managed to pull her little turban thing almost off, so now her hair is a mess! It’s so hard to be fashionable in the hospital!

Uncle Andy came today to give me a little respite. I took a shower, a 1-hour nap, and got a 90-min massage. I feel almost completely refreshed. My little “girlie problem” has been raging the past couple weeks. In a mere just-over-two-weeks, I’ll be back here getting my little girlie problem taken care of, with my body parts still in tact. I hope. We’ll see! After 8 months of this crap, I’m ready for it to be over!! Regardless, it’ll be good to see my sis and friend, Monica!

It’s been an international weekend anyway — Maria’s day nurse is from Russia, night nurse from Ghana, and my massage therapist from Yugoslavia. They’ve all been great so far…

4th of July

Saturday, July 10th, 2010

We headed to Albuquerque to see Grandpa & Grandma Ida over the holiday weekend. We went via the Beeline Highway, for a change. It was pretty, but because of where we live, it’s soooo much better to go I17 to I40. We’d driven an hour going the new way and were still in town!!! The road goes through many small towns with traffic lights, road changes from 1 lane to 2 lanes and back again, several turns onto different roads to get to I40. I much prefer 2 lanes, divided highway, interstate, cruise control, no muss, no fuss. First time ever–Maria slept almost the entire way!! In fact, she woke up right about the minute we were supposed to arrive at Grandpa’s, if we hadn’t gotten stuck for 2 hours behind a fatal accident on I-40. Yikes!

We had a nice, lazy time in NM. Great visit with the cousins and Aunt Louise. Small group, so we got to visit more and longer. Sure wish we saw each other more often! I forgot Dad & Ida have a pool at their place, so I took Maria swimming. She had a great time, kicking her legs, moving her arms. I think she knew the day we were leaving because that morning she was fighting to get into Grandpa’s lap. She really loves him! I tried to get some current photos of them; too bad Maria wasn’t cooperating. I have many cute ones of them, but nothing recent.

She slept great Fri and Sat eve; yet the night before we left, she did her usual sleepless night thing. (It’s been a week and I’m still not caught up on my sleep….) Not only did Maria sleep most of the way to ABQ, she slept much of the way home also — I don’t know what got into her. She NEVER sleeps in the car, and this trip she slept several hours each way! Our little girl is growing up!

The 11-year old daughter of one of Maria’s special ed teachers catsat. It worked out great! Cats were happy, new catsitter loves them! It’s so sweet how Bella and Kijana get along with each other and with Maria and with the new catsitter. I’m thrilled that it worked out so well!

We went swimming this week, and Maria was kicking so much, I had to really hold on tight! The coolest thing, though, was yesterday when Sue said she was going to put the vest on Maria and we both heard her say “no”–plain as day!! Sue also heard her say “no” last week! Sue was sick 2 days this week so I had to stay home and work while taking care of Maria. Not a good thing. I’m thinking I may need to find someone else for a few hours a day and see how it works…

The other big event this week was our quarterly meeting with the state. State person was less of a bitch than usual and the best news–she’s passing us off onto yet another coordinator because their unit is splitting into kids and adults and she’s staying with adults. I found out that she’s never had a kid as “involved” (disabled) as Maria. Now I understand why they think we’re trying to take advantage of the system. Often Maria’s asleep when they come, plus they rarely pay her any attention, so obviously if she and others don’t have experience with someone like Maria, they don’t get how much help she needs. Why the hell did it take me 6 years to figure that out?!

The funniest thing of the week was this afternoon while Andy was feeding Maria, he told me Kijana finally caught the gecko that’s been hanging out in our house (that’s not the funny part). I caught it and put it outside (it was still alive, fortunately). A bit later he said, “I let her eat the lizard’s tail because I figured it wouldn’t do any harm.” (or something like that). It’s Friday, I’m exhausted, so naturally I thought he meant Maria, not Kijana! I couldn’t figure out what the hell he was thinking letting Maria eat a lizard tail! hahaha. hmmmm, guess you had to be there…. still makes me chuckle!