The phone rang this morning. It was Dave, Annika's transplant coordinator in Chicago, checking in on Annika. Her lab numbers, never anything to cheer about, are once again going in all the wrong directions.
"But, hey," I said, "She has definite symptoms today--runny nose and a little cough!"
"Wow! That's great news!" enthused Dave.
"Yeah, I know!" I agreed.
Our enthusiasm was definitely not tinged with any sarcasm, either. Dave was genuinely relieved to hear that a cold might be responsible for her recent non-stop fever fest. Unexplained fevers still have an ominous ring for us, with all the many hidden culprits that could cause major fevers unaccompanied by any other obvious symptoms--rejection or an antibiotic-resistant bacterial abscess are just two we have first-hand experience with. There are many other tales that other parents of chronic kids pass around the hospital hallways among themselves, in some strange version of the campfire scare stories. Except that the stories are true, which pretty much drains any adrenaline-rush thrill and instead just feeds our festering paranoiac complexes.
By far the worst stories swapped by parents involved uncertainty--the times when there was simply no explanation for why their child had been struck down. Other times, the cause of the illness was clear, but the chosen treatment involved a series of educated guesses. Having lived near the edge of medicine for a while, I can tell you that a shocking amount of medical practice does not seem to be guided by some sort of official doctoring handbook, memorized during all those long years in medical training, but is instead the ever-changing result of gut instinct, previous experience, and research. All of which still sometimes failed, in terms of determining a course of action. There was a PBS special on children's medicine
being filmed at our hospital during our long months there. One of the stories featured involved a mom having to decide whether or not to relist her son for a liver transplant. A second transplant, obviously, is not an ideal situation. With every successive transplant, the chances for "intraoperative demise" (the favored term used by the anesthesiologist for Anni's first transplant, and, no, I am not making that up) increase, as do the odds for "postoperative demise", for that matter. (Note to anesthesiologists everywhere: I think parents handing their children over to you for an acknowledgedly risky surgery deserve to hear the word "die" from you. Suck it up and spit it out.) For various reasons, his case was particularly risky. The doctors could not tell her what the right decision would be--it was possible that his current problems would correct with treatment, and a transplant would be rendered unnecessary. Or he could suddenly become very sick--definitely too sick to survive a transplant anymore. So the decision had to be made immediately, and the right answer was just not apparent. One of our favorite doctors at the hospital was shown, on screen, explaining that "This was where the science of medicine was gone...this is a human process at this point." This boy's case was a particularly stark one, in which the doctors really could not tell the mother with any certainty what the best course of action was, but during our entire stay I was struck with how often decisions were explained to us in a rough cost-benefit analysis. An analysis being done, I knew, on an incredibly small sample size used to determine the particular statistics on risks. Trust becomes a huge part of your relationship with your child's doctors, in other words.
In the end the mom decided not to relist her son. Thankfully, his problems did resolve and he has done extremely well, given how many obstacles that tough little kid has had to overcome. His mom, on a support group I belong to, always describes her son as enjoying life with unstoppable glee. You can read more about their story here
Meanwhile, Annika continues to prove that she is mostly a normal kid. While swapping hoorays with Dave on the kitchen phone, I watched as Annika pulled up a chair to the kitchen counter. It was time for her 9 a.m. pill, so I was pretty sure that was what she was going for. We keep all of Annika's med's up in an inaccessible cabinet, except for the case that contains her pills for just that day (all 14 of them). That way, I'm not having to clamber up to get down her pills for her 5 times a day schedule, but if a child should happen to get the pills off the counter, there is only a harmless 1-day dose of them available. Since Annika has been doing ibuprofen every 6 hours to keep the fevers in check (and it really is necessary--her fevers quickly hit over 105 without it, which, along with chronically low magnesium levels, puts her at risk for seizures), I also had that on the counter. Annika is not really a great fan of the taste of ibuprofen, but she has been pretty ticked about not getting to go to preschool or the park and various other fun things. Evidently, telling her that the ibuprofen would "make her feel better," translated into her mind as "is the magic potion that will get you back out in the sandbox with Sabrina." I watched in amazement as she pushed down on the childproof cap and gave it an expert twist. I just managed to grab the bottle as she was attempting to pour it into a cup she had placed there. Evidently she had already planned this all out. "But, mom," she protested, "I want to get feeling better!" I gave a little squeak of alarm and grabbed the bottle away. Dave, father of one just a bit younger than Annika, was understanding of the interruption. I, on the other hand, was not ready for this milestone to be reached, even though we've not stored the medicines in an accessible place for quite some time. Ugh.
Just a few seconds later, there was Frankie, opening the lid of the kitchen trash and energetically tossing out sodden, loose tea leaves. At this second interruption, Dave and I gave up, after confirming that Anni was indeed coming for a CT next week, and arranging for follow-up labs. Dave hung up clearly not worried about Annika, and that lack of worry always makes me feel better, too.