Archive for May, 2008

Nearly Hospitalized Again

Saturday, May 31st, 2008

It’s been an interesting couple of weeks.

Maria developed some kind of respiratory thing, but this was different that ones she’s had before. It was bad at night and kept her parents awake, but during the day she was mostly fine. When it was bad she would wheeze and whine and do that “seal bark” cough that was so high-pitched sounded like a scream. When she slept I could see her struggling to breathe.

Cathy got her into the pediatrician the Friday before the long weekend, and it turned out to be a rough visit. 20+ minutes of Cathy holding Maria while the nurse tried to get her blood oxygen. Then 30+ minutes of Cathy holding Maria while I tried to give her a breathing treatment. Then 20+ minutes of Cathy and me holding Maria while the doctor tried to get a followup blood oxygen. By the end of it, Maria was a basket case. She was freaking out, her breathing was really weird, she was possibly seizuring, and so on. Needless to say, me and Cathy and the doctor were basket cases as well.

Her blood oxygen was around 91 and below 93 is when they put you in the hospital. The doctor said any other kid she would put in the hospital but she knows how close an eye we keep on Maria so agreed to let us take her home as long as we promised to head to the emergency room at the slightest hint of trouble.

The doctor had us give her breathing treatments every 2 hours (instead of the usual 4) and a round of antibiotics. Over the weekend we kept going back and forth about the emergency room but Maria got through.

She’s a little better but still wheezy. The doctor now has her on 5 days of steroids (prednisolone) and if that doesn’t clear it up we will go back in.

We have no idea what caused this. The symptoms are much like asthma, although the doctor pointed out you don’t call it “asthma” unless it happens over and over. For now it’s just reactive airway disorder and clinical pneumonia.

Maria hates the steroid and refused to take any of her medicine yesterday. When we have to fight with her to get the medicine in, there’s that much more of a chance of aspiration.

Meanwhile, we had a meeting with the insurance to evaluate Maria’s chance of walking, still trying to get the walker approved. There was a nurse from DDD and a representative from Cathy’s private insurance. They both seemed pretty supportive of our need but they aren’t the ones who make the decision. The PT was there and worked with Maria in the walker we want and we had lots of video of Maria walking with the PT that we gave them so they can show the medical director. We felt a bit more optimistic after their visit, but the decisions have been so nonsensical up to this point that we aren’t getting our hopes up.

In the meantime, Cathy’s been talking to her attorney about all this. She’s not an insurance lawyer but she is an advocate for special needs kids so wants to help if she can. If this latest attempt to the get this medically necessary equipment falls through we have to go to a fair hearing and we’re not sure what that involves.

June is going to be a very busy month. Lots of doctor visits and the Hydrocephalus Conference. It’s going to keep us old folks on our toes.

Denied, Part 2

Sunday, May 18th, 2008

If I may rant for a few minutes… We received the denial of the appeal for the EasyStand sit-to-stand stander and Miniwalk walker today from the Division of Developmental Disabilities (DDD). It’s 12 pages, in part because they repeated my 6-page letter word-for-word. When they denied the equipment originally, they obtusely gave four reasons: 1. Need proof equipment works for her condition, haven’t received info from doctors or other providers showing this item helps. 2. Services must be medically necessary (that is, it must prevent disease, disability, or bad side effects or prevent the advancing of disease or prolong life). 3. Services must be cost effective, there is another item or service that costs less and works as well. 4. Basic care should be tried first. My letter addressed each point for each piece of equipment. I included letters and reports from doctors and therapists, as well as citing scientific studies.

I thought they’d stick to these 4 items, but no. They say “We have reviewed the [information] and have determined that the member appeal be denied. Our decision is based on [laws cited] that allow only medically necessary, cost effective and federally reimbursable services as covered services.” They go on to say that “it appears that there should have been two separate appeals for two separate pieces of equipment.”, even though I addressed each piece of equipment for each point in the appeal. And, my favorite part, “With regard to the Gait Trainer [Miniwalk Walker], the materials do not indicate that Maria has the potential to walk independently, confirmation of which must be received by the Division of Developmental Disabilities before a Gait Trainer can be provided.”

The only saving grace of this pile of crap is that they are recommending that an assessment be done to determine whether Maria has the potential to walk independently. I’m hoping that all they need to do is to meet Maria and they will see her potential. We’ve experienced time after time that when people read reports and test results about Maria, they don’t have much hope for her; but when they meet her they are always pleasantly surprised at how much potential she has and how well she’s doing.

The DDD’s letter also says the EasyStand sit-to-stand, in its seating position, has the same purpose as the stroller they bought us, and in its standing position, has the same purpose as the Miniwalk, so they’re not going to make a decision on that until they decide about the walker. Granted, the walker is more important, but tell me how a stander has the same purpose as a walker.

The other disturbing passage in the letter, when talking about medical necessity, says “The Chief Medical Officer reviewed the documentation submitted with the appeal and determined it does not appear the request is for rehab reasons (per the physical therapist’s note). As a result, we recommend denial of the appeal.” I don’t even know what that means, but Barb (PT) sure is going to be pissed.

I have 30 days to request a fair hearing, which I will do, although I have no idea what that entails–do I need a lawyer, for example? In the mean time, I’m going to call the DDD Health Care Services on Monday to get the ball rolling on this evaluation that they’ve recommended. Of course, as Barb said last week, if Maria’s feeling good during the assessment, she’ll do awesome; if not, then not. I’ll just have to video tape them in their next session (in 3 days) and hope Maria’s doing well, so I can show that to them. Of course, now that there’s only a few days left of school, Maria seems to be feeling a bit under the weather. She slept a whole lot of today and is coughing a bit.

And in the middle of all this, we’re filing a Petition to Remove Conditions on Residence for Manolis. He has permanent resident status (which is only good for 2 years to make sure we’re married for real and not just for a green card). It’s due 3 months before his resident card expires–although we filed the renewal of his work permit card 5 months ago (!), and haven’t received that yet, so who knows if it will be done in time. We finally got an appt with Immigration this Friday, so we’ll see if they can tell us anything about the work card. I don’t know if they’re massively backed up or if I screwed something up when filing the papers. Their instructions are so hard to follow–even for me, an English-speaking, semi-intelligent person. The challenges we’re given…..

Barb, the PT, is going to experiment with some “intensive dosing” this summer. We’ll do PT, focusing on walking, 4 days/week for 2 weeks, then take 2 weeks off. We’ll do that a few times and see if that helps because obviously walking with Barb 1 hour/week isn’t cutting it.


Saturday, May 17th, 2008

The big news with Maria is that the state has denied to appeal to pay for her walker and stander. Their reason is that they don’t believe she will ever walk independently.

Even if that were true, and none of us believe it is, that’s completely irrelevant. As her PT pointed out, does that mean they don’t pay for a cane if the person is unable to walk with a cane? The first issue is that she needs to do more weight bearing for the health of her hips and spine. The other benefit is that the ability to move around on her own in the walker will increase her cognitive development.

So we now get to have a hearing. We will certainly bring her PT as well as video evidence that Maria is showing interest in walking. The PT recently helped her walk back and forth over about a 30-foot stretch over a dozen times! We will also bring any other medical or therapeutic support we can to argue our case.

And every day that they jerk us around, Maria’s hips and spine get a little bit more deformed.

As someone who worked for health insurance for ten years, I generally side with the insurance companies. Most people have an utterly absurd idea of what medical insurance is then they get mad at the insurance for not living up to their fairy tale fantasies. However speaking as a medical insurance professional, this situation is just utter crap. This should have been a rubber stamp approval and they are dragging it out month after month.

Meanwhile, Sue has this thing in her ear and the doctors don’t know what it is. It’s some kind of fluid sac and they are utterly baffled by it but they are going to do some more tests then go in through her skull and cut it out. Sounds like fun. It also means she won’t be able to take care of Maria for at least a week.

This coming week is Maria’s last week of school. I think she’s going to miss it because she really seemed to love school, but it’s not long until it starts again in the fall.

Nearing the End of the School Year

Sunday, May 4th, 2008

Things have been pretty busy over the last couple of weeks. Cathy’s been traveling, Sue’s had some health problems, and Maria’s had a few issues too.

Maria had several Vitalstim treatments last week to get her in the best shape possible for her barium swallow on the 1st. Despite the treatments she still did quite poorly, aspirating several times during the test. Although they didn’t mention a feeding tube, they recommended that we give her honey-thick liquids only – no food. We are stubbornly continuing to give her food, but it’s still the mushy stuff. She has trouble with it and we have to feed her slowly but we still think it’s best. We go back to her regular feeding therapist this Thursday so we hope she has some good advice.

We closed out her current IEP this week and set up goals for next year’s. The meeting had her teacher and all her therapists so we could discuss progress and goals. Her teacher talked about how they were afraid to leave her alone for even an instant at the beginning of the school year but, as they’ve gotten to know here, they’ve become more confident and realized that Maria often makes the most progress when people back off and let her do it herself. That’s a lesson we are still learning after four years.

We talked about how Maria is becoming more communicative in her way. Cathy and I have notices how Maria lets us know when she’s in pain, even if we can’t always tell what hurts. In the past she might jump if something happened like getting a fold of skin caught in the belt buckle, but after that she’d just sit happily. Now she has long-term reactions to things and lets us know when she’s not happy.

The last day of school is coming up and it’s going to be a bit hard to go back to having her home all the time. The teacher tried to get her on the year-round school but it was decided that she’s not likely to lose her skills over the summer so she doesn’t qualify. They will see how she does in the fall. The teacher thinks (and I agree) that it will take Maria some time to get used to being back around so many kids again and that could be enough to qualify her for summer school next year.

She has a follow-up with her neurologist this week along with, as mentioned, her normal feeding therapist. She got a couple of blessings at a Greek Orthodox monastery yesterday, so we’re covering all the bases.