Warning: this is a rant. If rants bother you, please skip.
Kate attends a special district-sponsored speech preschool once a week. Since it is a public school thing, she needs proof of immunizations which I dutifully collected last spring. Recently, I was annoyed to get a notice stating that she would soon be excluded from school if she didn’t provide proof that her immunizations were current. I called her pediatrician’s office and they reassured me that she is up to date and won’t need more shots until she enters kindergarten. I tried to contact the nurse to learn if there was some mistake–but this proved to be difficult–she is only there once a week! By the time you forget once, and remember after 3 p.m. once, well, it’s about time for them to start excluding your student from school. Thankfully, today I finally reached her. She explained that Kate’s records were unacceptable because she had a record of receiving only 3 of the Hib vaccine and Kate now needed a fourth. I begged her to stay on hold while I called the pediatrician’s office. (I can’t believe how easy it is to make a conference call on my new cellphone. Very cool!) With a surprisingly short delay, I soon got a nurse on the line who confirmed again that she was current on her immunizations and had had all 4 Hib vaccinations at this point.
Then the sticky part: the school nurse needed the date of that 4th immunization. The nurse refused. Because of HIPAA, she could not disclose the date of that immunization. Her explanation was ludicrous: someone could steal Kate’s identity with that information. Um, no. Look, I don’t want you to tell me her birth date or her social security number, all I want is one piece of information: What was the date of her 4th Hib shot? No way. The nurse was adamant. I could make a copy of my photo ID, download a form from their website, and fax it to them, or I could come in person to their germy office with my photo ID and fill out a form and pick up their printout. I said thank you, far too curtly, and ended that part of the call. [Pmom: Please remember it is not right to take regulation aggravation out on the messenger. Her explanation of the reason for the Hipaa rule was ridiculous, but it is probably true that legally she was not allowed to release the information you sought.]
The school nurse and I were then alone on the line and I continued to have the blaming the messenger problem: Pmom (aggravated voice) “So, let me see if I’ve got this straight, despite the fact that I just did this 6 months ago, what you want me to do is drive to the pediatrician’s office, haul my children inside with the germs, and pick up the form that confirms what we already know?” The nurse was nicer to me than I deserved. She said that since she had heard that Kate’s immunizations were complete, I could wait and pick up the record the next time that I was at the pediatrician’s office. That was a good common sense solution to this mess. (I wonder though, if I hadn’t been using my aggravated voice–as let me be clear, I should not have been–would she have offered this solution? I also wonder why the pediatrician’s records that I collected just six months ago were not sufficient. Was some part of the paperwork lost or did Kate get shots during the summer that I forgot about?).
Anyway, given the public’s interest in knowing that school children have been properly vaccinated, it is ludicrous that vaccination records are protected with the same security that we rightly accord to pregnancy and AIDS tests. Vaccinations have become so secret that it’s tough to make sure your child has been properly vaccinated.* The school already has my daughter’s birthday and social security number; let them have access to a big national database where they can check her immunization records directly.
(*Of course, under the same regulations, there are better and worse ways of doing things. I miss Kaiser Permanente–they automatically give you a printout of your children’s immunization status at every visit. Every doctor should do that. Let’s make prevention easy).
Not feeling very interested in Kate’s privacy today,
but yep, Kate isn’t her actual name (is that odd?),
grumpy, but feeling better after blogging about it,
P.S. In honor of November and the intent of this blog: I am thankful that the greatest hurdle to my daughter being properly immunized is my own memory. I am blessed with good insurance and excellent access to medical care so I have much to be thankful for. I am also grateful to people who are nicer to me than I deserve. I need to try harder to be nicer to other people than they deserve.
I threw away three bars of cream cheese yesterday. I feel guilty. Indulge me in my explanation:
My cumulative efforts to be healthy are rather modest. But I do try to avoid buying desserts that I could make myself–no packaged cookies or cakes, and no cheesecake. Cheesecake–you know the one. The large round cheesecake that Costco stacks in the refrigerated case by the dozen. The one I must pass on my way to buy milk. The one that calls my name. The one with the tempting little cut marks that suggest that one could somehow limit oneself to just one narrow slice. Thinking about it makes me want to go shopping RIGHT NOW. But here’s the thing: I don’t buy it. Because every time I pass those big plastic domes and glance at the fatty goodness within, I offer stern self-remonstrations: there is cream cheese at home! It’s just getting old in the fridge! If you want cheesecake, make your own! Do it homemade. I tear myself away and head to the milk room, safe for the moment, but destined to return soon to face the cheesecake again. Having a goodly supply of cream cheese in my refrigerator (it lasts for months!) helps me through it.
What do you say?
There is a new senator in Massachusetts. He is Republican. It hasn’t happened since 1972. Martha Coakley was supposed to be a sure thing. She wasn’t. I have been trying to figure out what I think about this. I posted something about it on Facebook and thought it was interesting to see my friends–some extremely conservative, some much, much more liberal–line up on opposite sides of the fence. Apparently, either Coakley’s defeat and Brown’s election is an answer to prayer or it is a sign that we didn’t pray hard enough.
I find that I am not of one mind. I can’t celebrate the election of someone who supports waterboarding as an interrogation technique and opposes a path to citizenship for illegal immigrants. It is hard to feel happy to see the chances for more Americans to enjoy health coverage decrease. On the other hand, I didn’t like the looks of the “reform” bills coming out of the House and Senate. While these bills accomplished things that were important to me, (for example, no denials based on pre-existing conditions and healthcare extended to more people) they seemed to do it the wrong way. Where are the promised cost savings? How will these plans be sustainable in the long term given ever rising medical costs? How will we pay for it? I am frightened and appalled by our massive debt and deficits.
Unfortunately, the healthcare reform I favor–public option and rationing at a minimum and hopes for single payer in the future–isn’t politically possible. The question becomes: if we can’t do healthcare right, is it best to do it wrong and try to fix things later or is it better to stick with the status quo? Without healthcare coverage, many Americans are suffering greatly today. With massive debt and a messed up health care system, we will all suffer in the future. Being realistic about what is possible politically, which way is best? I don’t know. That’s why I don’t know what to think about Scott Brown.
I do know that I was surprised to see the citizens of Massachusetts ( supposedly a U.S. model for universal healthcare coverage) vote as they did. I need to learn more about why.
I am a latecomer to blood donation . I regret this. I have always wanted to be a person who donated blood. The 4th grade teacher I idolized, Mr. Dunkley, took us on a fieldtrip to the hospital and donated blood before our eyes. He was so noble! so brave! I wanted to be like him. Later, in high school, Hawkeye Pierce and the gang, my M*A*S*H friends, were always ready to lie down and pull up their sleeves when someone needed them–and someone often did.
Well, I don’t live in a war zone, but the Red Cross tells me that every 2 seconds in the United States someone needs blood. I can donate as often as every 56 days, but my blood’s shelf life is only 42 days. In fact, last year a study suggested that patients who are transfused with blood older than 28 days are more likely to suffer infections. So, the fresher the blood, the better. That means the more donors the better. The difficult part is that donors are hard to get. Less than 38% of the U.S. population is eligible to donate blood. Of those eligible, most don’t donate. There are a lot of us who are squeamish and afraid of needles!
But if you are someone who can donate, consider the cancer patients, the new mothers, the car accident victims, etc., who may need your blood. Some day you could be the one who needs blood or your mom, sister or daughter, your dad, your brother, your boss, or your best friend. Or several of you. One thing is almost certain: if you can donate regularly, you will help people. The need for transfusions is rising 6% every year, and the number of donations isn’t rising that fast. We hope for artificial blood, but it’s still a hope for the future. Today what’s true is that if you can donate blood, YOU ARE NEEDED. If you can’t donate, you can help by volunteering, organizing a blood drive, or my personal favorite: babysitting for someone who wants to donate! (The donation process takes almost an hour start to finish and no one wants to take small children to a blood donation center).
I don’t know if she actually did; I couldn’t see. But Pdad thought so. After she got Kate’s IV in, I did hear her say several times, “That’s why I’m an adult nurse!” I think she actually did a great job. The IV went in on the first try. We all held our breath–last week Kate had to be pricked a third time after a vein collapsed, so we didn’t want to tell her that it was over and she was done, until it was over and she was done. But the vein performed and the test continued.
The nurse was under pressure. Kate is young (not yet three) and little. We had mentioned last week’s three tries with the IV. It seemed like a whole room of people was looking on. I couldn’t have put a needle into Kate, but the nurse’s tenderness still surprised me. None of us want to hurt a defenseless little person who has to trust us.
At an earlier point yesterday, the lights were off, the high tech monitor was on, and the specialist studied it. I lay next to Clara in the bed, trying to give comfort with my presence and my touch, wishing I could see, but knowing that I wouldn’t be able to understand anything I saw. Pdad and the two technicians watched the specialist. I could see her face as she studied the monitor. I wondered if she would be able to see what she needed to. I wondered whether she would be distracted by all of us watching her. I wondered if she would have to order further, more traumatic tests to be able to see better. I wondered if Kate would have to be sedated again today, whether it was truly safe, and whether we were making the right choices for her. As the specialist silently scanned the screen, I wondered whether she had the ability and the experience to make the right call. I had never met her before that morning; she seemed both competent and compassionate, but I didn’t yet know if she deserved my trust.
The day before, our pediatrician had called me from home on his day off to recommend these tests. I was baffled. Our medical odyssey began with the intermittent tremor we noticed in Kate’s hands and arms. Last week the focus was her brain. Thankfully, the MRI didn’t reveal any obvious bleeds or tumors. So why were we now looking at an echocardiogram of her heart? The pediatrician had a difficult task. He wanted to reduce my anxiety by explaining that there was no cause for concern and that the tests likely wouldn’t reveal anything that wasn’t normal. At the same time, he wanted to communicate urgency for performing the tests. The contradiction gave me anxiety.
A too-brief midday conversation with Pdad confirmed our shared mental status. The pediatrician wants more tests. Are we certain that seeking more medical intervention and study is the best course for our daughter? No. Are we certain that it isn’t? No. Do we trust that our pediatrician knows the best way to proceed? No. Do we trust that he cares about her and wants what is best for her? Yes. Do we trust him and go forward? . . . ?
It is curious to me how our situation as parents in the hands of the medical system mirrors Kate’s. To a degree, we are helpless. We can only trust or not trust. Our situation is different than Kate’s though, in that we know a little more, and we have the aching burden of decision by proxy. Perhaps that nurse could shed a few tears for us too. Perhaps she already did.
P.S., Kate’s heart looks great! It is normal and healthy. There are no holes. She was very brave in getting her IV and was miraculously cooperative and even sleepy through all the procedures which allowed her to avoid sedation. We appreciate your prayers. We are very thankful for good test results so far. The plan now is to simply wait for our appointment with a pediatric neurologist near the end of January. The good test results have done nothing to explain her tremor, so the mystery and a reasonable dose of anxiety continues.
The line for the H1N1 Vaccine at the Health Department wrapped around the block this morning. I was stunned. They started administering the vaccine at 9, and we got there by 10. I wanted to get my kids vaccinated, but we had to leave because we hadn’t dressed warmly enough to spend an hour or more (probably a lot more!) in the cold! I hope to go back tomorrow or later day, but given the line I saw, I suspect they will have run out of vaccine again by then. I wonder which is riskier: waiting in that huge crowd of people with so many young children or not getting the vaccine?
Given my recent interest in pandemics, I have become convinced of the importance of vaccines. I have been dismayed to see so much Facebook chatter about people afraid of and avoiding the vaccine. It is true that H1N1 is often mild. It is true that people with pre-existing medical conditions are often the ones who get in trouble. But it has also killed otherwise healthy people. However mild, it is a pandemic and most of us will be exposed. Getting the vaccine can help us stop the spread, it’s that simple.
On the other hand, I don’t think I’m ready to wait in that block long line . . .
Updated to Add:
Don’t miss this really helpful info about the vaccine: