Wednesday, July 18, 2007

More about that Kraken

This is an addendum to my Beastie post. I read the Vatican letter I linked to, and this article The Vaccination Question, and the bottom line from what I gather is that vaccinating one's children with the illicit vaccines is remote mediate material cooperation with abortion. That's not good. But it's remote, and passive, not direct and active. That makes it less bad. It's not as bad as Elizabeth, anyway. And in cases of "significant risk" this diluted form of moral responsibility might be permissible.

This may not be of interest to anyone who's not a convinced Catholic. (But then, I don't think anyone's reading this blog anyway, and if anyone is, they are probably Catholic or sympathetic to Catholicism). I wanted to write this out anyway, though, in order to make it as clear as I can what the Vatican presently says about this issue.

From the article:

The Vatican paper attempts to address the dilemma parents face. Parents have a sure and certain moral obligation to promote the health and well-being of their children, and vaccination, in general, is part of that parental responsibility. However, the vaccines which utilize these human cell lines derived from aborted babies are immoral. Their manufacture and distribution is morally illicit "as a matter of principle." Using the vaccines represents cooperation with the evil of the original abortion, even if in a remote and passive way. Thus the recommendation that parents make "an objection of conscience," up to, and including, abstention from use.

Except, the paper says, when "significant risk" exists in refusing to use them. This is not an insignificant caveat.......

The "significant risk" gives Catholic parents a loophole. The Vatican letter, I believe, says we "may" use illicit vaccinations if there is no alternative, in those cases.

Were we remiss?

I know many families who don't choose to vaccinate their kids for varicella. Not many with a liver transplant kid though. Were we obligated to immunize our kids?

I pondered this a lot while walking and saying Rosaries by the lake with my precious Aidan.

WERE we remiss?
Were WE remiss?
Were we REMISS?

(Different but equally agonizing guilt nerves twanging with each different emphasis)

I do not know. That Kraken looks just as evil and hungry as it did before. And the original aborted baby was just as precious as Aidan is. (I think I have another angel in my heart now, along with Aidan's donor).

No easy answers.

Tuesday, July 17, 2007

Keeping a Vigil

So much of Aidan's journey has been about waiting. He waited for his transplant. The other day, we waited to talk to the GI nurse, then waited to get Sean to the PCP so he could get the varicella diagnosis confirmed, then hurried down to Children's Hospital .... to wait, to qualify for the Human Varicella Zoster Immunoglobulin.

Then we waited again. Waited to see how the virus took its course through Sean; waited to see if and when Aidan and his siblings would come down with the varicella.

Waiting takes a particular form. Up here at his grandma's cabin, we divide our days between walking with the stroller, walking down to the lake, watching Pokemon videos, playing with grandma's tops, playing in the sandbox, and then of course, meals. I talk to Liam about books and writing. I drive down to run a couple of errands with Kevin; I drop off Liam and pick up Clare, who talks about books and movies and brings a distinctive feminine element to our vigil up here in the mountains. It reminds me a bit of some of Aidan's "frequent flights" to the hospital, but I am not as lonely and here, the natural world is a consolation. It guides waiting into a peaceful cycle. The lake moves from silky tranquility to cheerful choppiness and back to a rosy stillness. More restful than the fluorescent light cycle and 4 hour vital sign check rhythm of the hospital. And there is more room to walk. Walking is a great aid to waiting.

I say lots of prayers. I call home several times a day to remind Sean to take his acyclovir, to inquire about changes for the better or worse, to assess his well being as well as I can over the phone. He never sounds really ill, and after a while, I expect less and less that he will have a difficult course with the varicella. It is Day Six now and the pocks are disappearing.

I make plans to come home.

We wait now for the beginning of the symptoms in his siblings.

Waiting is a discipline. I never knew how carefully you had to balance preparation and watchfulness with quietness and perseverance. It's like the days when we had to give Aidan his many medications through his feeding tube, slowly and with painstaking care, over the course of an hour. Too fast and the whole lot would come out. Too slow and we would be behind schedule, because not long after we got one lot in, it would be time for his next set of meds and we would start all over.

The waiting is like a stream flowing at a tranquil rate. There are eddies underneath, of stress and turmoil, but I have to put them aside for now. It could speed up any time and there would be white water and maybe even a cascade. Or the stream might ease itself almost imperceptibly back into calmness.

Friday, July 13, 2007

Saying Hello to the Beastie

Kieron Thomas, whose middle name puts him under the patronage of a Philosopher, put it elegantly:

"I wouldn't want to be protected from chicken pox if it meant I was safe because of the death of a little baby! That would be like Elizabeth betraying Jack so that she could save herself!"

I really really needed to hear that, because the unspoken Elephant, or perhaps tentacle waving Kraken, in the PCP clinic and then the GI clinic all day was: "So WHY didn't you have your kids vaccinated in the first place?" No one asked. They just worked all day to patch us up and fix our lapse. It is not the role I like to play. I like to be the Super Medical Mom who is the first to notice problems, the last to be an unnecessary annoyance. The GI nurse had to stay with us until 2 hours after her normal go-home time, until the whole hospital was locking its doors for the night.

It made me realize how much our society's virtue is about protecting yourself. I feel it, and I try hard to abide by it, most of the time. Some examples:

  • WHen Sean broke his leg badly when he was eight, when he was riding his bike, we entertained ourselves by counting up all the times the EMTs, paramedics, emergency room staff, hospital ward staff and orthopedic follow-up doctor said, "Riding your bike, eh? Were you wearing your helmet?" (He had been -- but with an 8 year old's logic couldn't figure out what wearing a helmet had to do with your LEG).
  • You strap yourself and your kids in car seats for protection.(and I do)
  • You "protect" yourself from having more than 2.2 kids or kids too early or late in life (boy, I flunked that one).
  • You protect yourself and your kids from radiation by using sunblock, from WNV by wearing insect repellent, and from dehydration by carrying a sippie cup wherever you go. (I do MOST of the time).
  • You are considered a second-class citizen, isolated and disapproved of, if you are a smoker. I saw someone at the airport carrying a case of duty free cigarettes emblazoned with the bold label: "By smoking you are causing harm to yourself and those around you." (I am not a smoker, but I do notice how society is positively Victorian about the dirty weed nowadays)

These examples vary in substance and in sense. My point is that our society equates virtue with being safe and very often, that means putting some sort of barrier around yourself or in yourself to keep you detached from whatever threat it is. But barriers aren't neutral. Their presence changes things. We aren't the same people when everything is about self-preservation.

We sat all day in the GI clinic because of the 37 page document the health care professionals had to weed through in order to give Aidan the varicella-targeted immunoglobulin. The doctor, whose has known us since Aidan's babyhood, said, "This is almost as much paperwork as you need for a transplant!" He went on to explain about how most of it was listing the factors for disqualification, the exemptions, the side effects, limiting the promises of efficacy......

I said, "That's their way of shifting the whole thing over on us," He laughed and said, "There you go! That's exactly it. They want to say, "we warned you!' so we don't come after them. That's what all these papers are about."

It is about protection for the drug companies too. It's not a bad thing all the time, or even most of the time. Most times, it's a good thing. We live in a remarkably safe country. But when you go against that Moral Law of protection, you feel like a bit of a scoundrel, a moral regressive, even if you think you have good reasons. At least I do. I think it is seeing our tired nurse sitting there patiently monitoring Aidan's vital signs. Protecting him from anaphylactic shock. After a day of wading through paperwork and procedural things. Protecting him again, at personal as well as professional cost. Protecting us from feeling the cost of our "mistake". I want to be on the good side of that battle, so it's hard when I'm not. Or seem not to be.

But I think Kieron was right, and I think that if we went back in time I would have to do it the same way, even if the conviction seemed a bit abstruse and thin compared to the bother, expense, pain and worry of these days, not just for us but rippling outwards.

Anyway, we got the VZ immunoglobulin... which cuts the risk of getting the disease down to about 30% -- and may minimize its course if he does get it. Protection again -- and we are grateful that health care professional's discipline is about health set aside from moral judgments, because if it weren't, our own morality would be at the mercy of that of the professionals.

And the little baby whose life was not protected would be forgotten and passed over in the name of Protection. Then Protection would be that unspoken -- but hungry -- tentacle waving monster in the room.

Thursday, July 12, 2007

How to Sublimate a Sense of Helplessness

When a teenager in your family complains of stomach pain and remarks on a few painful red bumps, and new ones keep slowly appearing...

You go and look up all the things that would cause single small red bumps, and you find that yes, the single most likely cause would be chicken pox. Finding that the parent-targeted articles are sort of superficial, you google varicella . You remember that at the time of your little one's transplant, chicken pox was said to be something that you really, really wanted to avoid. You look up "chicken pox post transplant children" and find Dr Punch's article "Infection Risks Post-Transplant".

A new chicken pox infection is a very serious matter for a patient on immunosuppression because the virus can cause more than the usual rash in these patients. It can cause a viral pneumonia or hepatitis, and these problems can be life threatening.
Yes, you had already gathered as much. During the day you keep researching. You still can't tell whether the teenager really does have chicken pox, but you want to be ahead of the game..... just in case. You find that for pediatric liver transplant recipients, VZIG shots after exposure and intravenous acyclovir appear to brighten the odds.

You send out a prayer request to friends that know Aidan's history and presumably will understand an anxious mom's feelings. Yes, they understand.

You do a little research on varicella vaccinations to remind yourself why you didn't get your 3 healthy and unexposed children vaccinated in the first place. You try not to second-guess. You deduce that your teenager most probably picked up the virus, if he DOES have the virus, on the flight back from an international trip where he was sitting separately.

By afternoon the teenager is running a temperature and the spots are more like classic vesicles. You have him call his coach since he is not going to practice. You call Aidan's GI nurse and find that she has left the clinic already, so you leave a message. You make family plans -- quarantine for the teenager and medical intervention for Aidan. You worry a bit about the teenager, because you have found that varicella in the adolescent population carries more risk than for children (he is just on the borderline between the lower and high risk age group).

You send out a more definite prayer request update and get lots more responses. You try to rest in God. And not second-guess, since that is your weakness.

By the next day you are googling terms like visceral dissemination varicella and finding that acyclovir does seem to have considerably brightened the outlook for immunesuppressed varicella patients. Reassuring, but.... there is always that provisional "but" when you are thinking of YOUR precious, beautiful child, who has been on the minority side of the odds so often, for good or ill.

You know that the immunoglobulin shots have some effect up to 96 hours after the exposure to varicella, and you know that your teenager was infectious for about 48 hours before the spots started appearing, so you figure the shot could still do Aidan some good. You are up at dawn steering Aidan away from his sleeping brother and just enjoying his beautiful good health and good spirits, that you have been taking a bit for granted recently.

You wait for the phone to ring. It seems like forever.