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.

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