Archive for January, 2015

Maria’s Second 911 Call

Saturday, January 31st, 2015

It’s been four and a half years since her first 911 call and now she’s had two.

I went to see Maria today, my usual Saturday visit. When I got there she was asleep on the floor and she was shivering. I asked Cathy, “Why is Maria vibrating?” I thought she was having a weird dream or lying on one of her vibrating toys or something but Cathy realized that (duh!) it was probably a seizure.

We sat her up. Her entire body was shivering like she was cold. It was mostly in her arms but I could feel it in her core and at one point her teeth were chattering. She didn’t feel cold though. She was kind of responsive but still half-asleep so it was hard to tell. Cathy gave her a Clonaizpam, her emergency seizure medicine, and it did nothing. After five minutes we talked about calling 911; when I realized her lips were blue that pretty much decided it.

The ambulance came and these very nice guys came in and started checking her out. It’s a little bit of a blur at this point but her oxygen was OK by the time they got there. Her blood sugar was low but they figured that was because of the seizure — her muscles were working overtime and burning up her fuel. The biggest surprise was that she had a fever. Cathy and Manolis have been sick all week but have been careful to stay away from Maria. She hasn’t been sick at all.

I rode along in the ambulance while Cathy followed in the wheelchair van. Manolis had to go to work since he doesn’t really get time off, and it was probably better for him to stay busy instead of fretting at the hospital. Maria had stopped shaking by the time they got her in the ambulance but she was still kind of sleepy and cranky. I figured she was just worn out from whatever had happened but Cathy was more worried. In the ER it took us a good hour or more but we finally got them to give her some Tylenol, which calmed her down but didn’t break the fever, and then they gave her Motrin and that finally took care of the fever.

They took blood — took them a LONG time to get it but the nurse was really careful not to hurt her and Maria was very quiet and cooperative. They swabbed her nose to check for flu and they sent her for an MRI and a shunt series just to be sure it wasn’t her shunt.

Good news: her shunt is fine. Bad news: positive for flu. Great news: they sent her home! We figured for sure they’d hospitalize her, but they sent her home with a prescription for Tamiflu and instructions to keep a close eye on her and give her plenty of Tylenol and Motrin to make sure the fever doesn’t come back, which could bring back the seizures. She’ll probably be out of school the whole week though.

It was 8 hours all told from the time I got there and noticed it until the time we got back home. Long day but it could have been worse.

DME Woes. Again. Still.

Sunday, January 18th, 2015

Maria is 10 years old. In her short life, we have gotten wheelchairs, standers, gait trainers, bath chairs, and other stuff. Every piece of equipment is needed for her quality of life (and the quality and safety of us, her caregivers). Every single piece of durable medical equipment (DME) is a struggle. The state (Medicaid insurance) denies almost everything the first time. Sometimes they deny it again. Every time I try to figure out how to make the process easier. Most every time it doesn’t matter. They change the process, they change the players, they change the requirements. Never have I been able to get anything in writing. Never have any of the people in the vast network of agencies and organizations and companies been able to answer my questions or help facilitate the process. Don’t get me wrong, we have found a lot of very nice people, but they appear to be as clueless as I am as to what to do or not to do to speed along the process. It is ridiculous!

As I’ve said in the past: we aren’t doing this for fun, we aren’t doing this because we are bored or just to see what we can get. All we are doing is trying to keep Maria safe, healthy, and not regressing. I’m sure they are trying to save money, but are they really saving money with all the effort it takes from doctors, therapists, and others to work on the appeals?

When Maria was 3 years old, I resorted to calling Laurie Roberts, a newspaper columnist. It worked. Do I need to do that every time? Should I contact the (new) governor or my congressman? They’re all Republicans, so I’m not sure how sympathetic they’d be. I just don’t get it. It would be bad enough if I never asked anyone what the process is, but I do. I ask every single person we deal with what to do, who to contact, what to include. So what the hell?! Sooooooooo aggravating!

Currently we are trying to replace Maria’s wheelchair and stander. They both got denied, for different reasons, niether makes sense. I spent hours, literally hours, on the phone this week trying to get to the bottom of it. I think I know the next steps, but it will take many more hours of calling, coordinating, and preparing documents. I do have a full time job. Did I mention this is aggravating?!

Lions Camp 2015

Thursday, January 8th, 2015

The registration is open for Camp Tatiyee, the Lions Camp that Maria went to a year and a half ago that we had mixed emotions about. We’ve been trying to decide if she should go back this summer or not. I was looking at their website out of curiosity and found something they added that caught my eye. It’s always said that the youngest camper is 7 years old, but now I noticed that they added age 3 as the youngest mental age. So that answers the question of whether Maria is going back to camp. Like ever. I’m not sure if I’m relieved or pissed.

And on another note, one of the organizations that Maria gets her therapy from sent out a Survey Monkey. Boy did I have a lot of pent-up pissed-off-ness to vent at them. I like the therapists, but they never return calls, they don’t have enough equipment, they don’t have enough therapists — I could go on and on. I even put my name and address, think they’ll contact me? They haven’t up to this point, why should they start now? (insert falling out of chair laughing emoji).

Christmas and New Year’s!

Tuesday, January 6th, 2015

Maria had 2 weeks off from school. We had plans to go up north to see the snow, but it didn’t snow; to go see the Butterfly Wonderland, but decided not to; to go to the zoo, but it was too cold. It was unseasonably cold here, so we just pretty much hung out at home and chilled. Maria slept a lot. I worked on and off. Manolis got a few days off in a row. As usual, Maria got lots of clothes and stuffed animals for Christmas. She’s been very healthy so far this year. I’m glad we didn’t try to go to NM, since they had to shut down I-40 in both directions one day because of the weather.

I did discover something rather disturbing–Maria has been sleeping on her tummy with her right hand in the left side of her mouth. I’ve been noticing for a while that her teeth are getting crooked, but just the other day, I noticed that the gums around one of her first molars on the top left is receeding so badly that you can almost see the root of the tooth. I think it’s from the pressure of her hand rather than from too hard of brushing. I noticed it because it was bleeding a lot when I brushed her teeth one day. We’re going to see the dentist soon to see what the what. And I put a brace on her arm to disuade her from putting it in her mouth, and only succeeded in her rubbing a large raw circle into her chin. Perfect! So I had to write one of my long descriptive emails to her teachers explaining the chin, the tooth, and the bite marks on her arm. Awesome!