Maria Rose

I’ve had to go back to work a few days this week to monitor a new class we developed. And of course, this is the week that Maria chose to be sick! Yesterday they called me from school to say Maria had vomited a couple times, so I left work to go get her. They said in the 15-20 minutes it took me to get there, she vomited a few more times. I think she vomited a time or two last night, heck I can’t even remember, it seems so long ago. I feel like I’m getting a head cold and I have a wicked sinus headache, so we’re wondering if Maria’s getting a cold also and is trying to pre-emptively get rid of the mucous. (gross, I know)

Today, of course Maria stayed home from school with Nanny Sue. She (Maria) vomited so many times that Sue was traumatized by the time I got home. She said she did laundry all day, bathed Maria twice, everytime she turned her head, Maria stuck her fingers down her throat and puked. Nice, huh? I used to be able to hear her across Maricopa County if she was sticking her fingers down her throat to vomit, but she’s getting much quieter about it — in fact the only time she did it this evening was when she was laying in my lap!!! I didn’t even catch her until it was just a little too late. Sure hope tomorrow fares better. For all our sakes!

Yesterday we started giving Maria Artane, which is similar to Baclofen; both are for muscle spasms, but Artane interferes less with seizures (Baclofen lowers your seizure threshold). Haven’t noticed any changes yet. But if there are any improvements, we should notice them soon. So now in the mornings she takes 4 meds (4ml, 2.5 ml, 2.5 ml, and 2 ml) and in the evenings we add fish oil, so that’s the 4 meds + 3ml — that’s a lot of syringes!! (We’re still using the ReliaDose to give her her medicine. I still think it’s the best invention ever. I heard the manufacturer wasn’t making them anymore, so I’ve been buying them like crazy on eBay!)

Maria’s still doing well at school. Only slept once in the 8 days she’s been there. I went to the school and had lunch with her yesterday. Gives me a chance to chat with her paraprofessional. I met the afternoon para, but only talked for a minute. She’s wearing her AFOs all day and her vest (TLSO) from 8:30am to 12:30pm or so. I told them to keep it on as long as she’s comfortable, eventually working up to having it on all day.

Friday we’re going to look at some wheelchairs. It’s been 2 1/2 months since our first visit; I thought it was all worked out. I should just call the guy with all my questions, but I’m a better emailer. He’s not so much–drives me crazy not to get answers to all my questions. I’m sure it’ll all be clear Friday — like what are the next steps, how long should this take, what else do I need to do, and most importantly, when do I need to get a van. Rosanne asked me if I was going to keep my car. I hadn’t even considered doing that, but since it’s paid off, I just might do that. That way, the van will always be here to transport Maria, we won’t have to worry about whether Manolis or I should be driving it for the day. We’ll just have to juggle the cars on the driveway, the street, and the garage.

And since we’ve had more than 2 or 3 calm days in a row, something had to happen. My belly button incision is infected. It’s been hurting for a while, getting worse by the day. Last night I had myself pretty worked up. Today I spent quite a bit of time on the phone trying to get an appointment; finally got one for tomorrow morning. The redness around my belly button is getting larger, so I traced around it with a pen to see if it gets any bigger tonight. It really hurts. And it looks pretty bad. I’m actually fairly concerned about it, but probably a course of antibiotics and it’ll be ok. I just hope they don’t have to open me up again…. It seems to have given me the dropsies — I dropped 3 glasses of water today. THREE! I never drop glasses of water. Annoying!

A couple nights ago, I heard a noise at 10 or 11pm. Both cats were with me, and it sounded like it was coming from inside the house. So I walked down the dark hall, heard a noise coming from Maria’s room, walked into her dark room, reached down to turn on the night light and to my surprise, there was my cutie patootie, out of bed, on the floor, across the room, next to the freezer. But that’s not all, she had unplugged the freezer!! I guess it was too loud for her…

The rest of the nights this week, she’s slept well. She’s been awake every day at school, has eaten all her lunch, loves the pet rats in her general ed class. We’re using chocolate kisses to encourage her to use the Big Mack switch (communication device), and it seems to be working. She’s getting better with it.

She’s still not drinking as much as I would like, but is eating very well (and not just the kisses. vegetables too.). Dunno if it’s 1st grade, the new medication, or the change in seizure meds, but whatever it is, it’s been great!

Today was Maria’s first day of school. I didn’t get a call from anyone until the end of the school day — amazing! Last year I was with her at school all day the first day to tell them about her (since she’s non-verbal), and I got lots of calls over the next few weeks regarding her actions and whether they were normal or not.

One of her special ed teachers, same one from last year, said Maria had a great day, didn’t sleep at all, ate all her lunch, took her medicine, spent most of the day in the general ed classroom getting to know the other students. The only not-so-great thing is she only drank 4 oz all day (nothing before school, even). She looked great when she got off the bus! Not smiling, but eyes wide open. She’s been in a good mood since getting off the bus and drank a whole 8 oz, which made me feel better.

The speech therapist was the other one who called at the end of the day. Said she met Maria today, she’s so cute, and she’s already fallen in love with her. She’s new to Maria’s school, they’re still trying to decide which therapist will see which kid, but she asked all the right questions and they’re already using the Big Mac switch. See seems much more what we need than the last year’s therapist. I’m feeling so much better about school this year than last! It really helps when many of the adults working with her already know and love her.

Today was my first day alone since my surgery, and I slept all day! Hope that helps speed up the healing.

We started Maria on a new drug this week — one of the ones her physiatrist prescribed in March. It’s Amantadine, originally an anti-viral and for Parkinson’s patients. It’s supposed to help her hearing and cognition. Monica (my friend visiting from WA to help me out) and I noticed a difference almost immediately! She seems happier, more mobile (rolls/army crawls across the room to reach me or someone else), pushing up to a crawling position more, she almost sat up from laying down once. Lots of things!

Thursday evening we went to the school for “meet the teacher” night. We met her new general ed teacher, special ed teacher, and nurse. Didn’t meet the new speech therapist. Found out she’ll have the paraprofessional we liked from last year, plus another one they say we’ll like. All-in-all things went well. Her gen ed teacher placed Maria at the end of a table near where they do reading. She seems to be integrating Maria into the class as a forethought, rather than an afterthought like her Kindergarten teacher. We liked her, but this one seems better (or perhaps I’m more relaxed?). The other comforting thing about this teacher is her husband and brother have seizures, which isn’t good, but she’s not as freaked out about Maria having seizures as some teachers might. Her sister is Maria’s school physical therapist, so she’s had more experience? with special kids.

It took Maria a little while to relax when we went to the school, but when she saw Sara (special ed teacher from last year), she was happy; and when we got home, she was in a really good, goofy mood. It was cute, really.

Friday I spent about an hour with her new nurse giving her all the prescriptions Maria might need for the year, when to take what, and how. She’s an RN, used to work at another school, very experienced. Seems like she’ll work out well.

Monday I’m going to send Maria off to school on the bus alone. (Last year I spent the entire 1st day with her in school by mutual agreement. And I rode the bus to school with her when she started riding it a couple weeks after school started. — ahh what a difference a year makes!). I knew last year would be the intense year; now that I know some of them and they know me and Maria, we’re all a bit more comfortable!

Monica left today. I was sad to see her and my sis go. I’m still not ready to lift Maria up, so tomorrow night I might have her sleep on the floor…although that could put her off a bit the night before school…. We’ll see. Nanny Sue is going to come every morning next week to get her ready for school and will be here when she gets home until she goes to bed. Surely by next weekend, I’ll be ready and able to lift her again? I have a follow-up appt Wednesday, so we’ll see how that goes. I’m still feeling quite punky and am not convinced the pelvic pain is gone, but trying not to be too depressed too soon.

I went in for my pelvic surgery yesterday, thinking it was going to be out-patient. That morning they even said I’d be in the recovery room for 1-3 hours. For some reason, they decided to keep me overnight, so we had to scramble and have nanny Sue stay the night with Maria and Rosie stayed with me in the hospital–none of us with jammies or toothbrush or anything. Kind of annoying. As it turns out, I’m really glad I stayed in the hospital with a morphine drip because I was in pretty wicked pain and w/o the morphine, I hate to think how I would have felt.

They found no endometriosis, but took lots of samples for biopsy, only found one spot of scar tissue, which they removed. The primary thing he did was cut some nerve that goes to my uterus, so if my primary problem is pelvic pain from cramps, then I shouldn’t be able to feel them anymore. Downside is I wouldn’t feel contractions if I got pregnant, but since I’ll be 50 in October, that shouldn’t be an issue. My sister was pretty excited about them doing that. I don’t know what I am…. All I know is the bowel prep was much worse than I remember it the past 4 or 5 times I’ve had surgery for my pelvic pain, and I’m in a lot of post-surgery pain. I have 5 incisions, which look big to me, and a very swollen belly. I got no sleep last night because everytime I nodded off, I breathe so shallow that the apnea alarms would go off waking me & Rosanne up. They gave Rosanne earplugs, but I didn’t use any; then at 2am I had a mini-nervous breakdown because I couldn’t sleep and I was in so much pain, so they gave me a percocet on top of the morphine and oxygen through a canula, and that seemed to help a bit.

It’s going to be hard not to lift Maria for at least 2 weeks. I sure wish Manolis was here, but with Rosie here for a week and my friend, Monica, for another week, and Sue and Andy most days, it should work out. It’s just a bit more complicated with sweet Maria around….. All I can say is thank goodness it’s over and I sure hope it worked….

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.

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.

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.

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…