Day 120 – 10.27.2018
When a sailor makes plans, they are written in the sand, at low tide…
Up until a week ago, our plans, as they were, saw us casting off the dock lines the first week of November, and sailing our boat south to the cheery Virgin Islands, sitting under swaying palms and drinking pain killers as we watched the kids frolic in the gentle waves under a warm Caribbean sun.
That all changed last Friday afternoon when we took our youngest crew member into the urgent care because we thought he might be a little dehydrated. Roosevelt hadn’t been eating very well the previous day or two and seemed kind of weak and “floppy”. Things escalated quickly and by midnight we found ourselves in the Pediatric ICU, waiting on results from an MRI, a lumbar puncture, and a slurry of other tests and screenings for every disease under the sun. By noon the next day most of the results had come back, all negative, which only left a few explanations for his deteriorating condition. One of these was a long shot, 1 in 2.5 million to be exact, but his symptoms were matching it to a T: infantile botulism.
Unlike adult botulism, which is caused by ingesting the toxin produced by Clostridium botulinum bacteria, usually found in spoiled canned food, infant botulism occurs when a baby, less than one year old, ingests the spores of C. botulinum, which subsequently colonizes their large intestine, and produce the toxin in situ. This can only happen in a baby’s immature intestines, as anyone older than one year, their natural gut flora will prevent the bacteria from taking hold. The toxin damages the nerve endings attached to muscles, preventing them from being able to contract. A weak cry, constipation, and trouble feeding are the first signs, followed closely by general weakness and loss of muscle tone, or as we described it to the ER staff, being a bit floppier than normal. Not long after this, the disease can progress very quickly to the muscles of the respiratory system, which would obviously have meant curtains for poor old Teddy. Luckily, we took him in when we did, and apparently caught it very early on in its progression.
Around noon on Saturday, the doctors decided it was a pretty good chance that infant botulism was to blame, and ordered a dose of a very special, time sensitive anti-toxin, made to order in only in one lab in the country. The $45k vial of medication was produced, and express delivered from California to Denver by 11pm that night, and Teddy was slurping it up through his IV by 11:15. This anti-toxin, called BabyBIG, stopped the botulism in its tracks, combining with all the free toxin in his body and preventing any further damage to his nerves. Hi five for modern medicine!
We’ve been here, at the Colorado Children’s Hospital, for just over a week now, and generally are in good spirits. Teddy has been improving daily, is now untethered from all the wires and IV lines that chained him to his crib, and now only has a feeding tube left to remind you that he is a sick little boy. You would never guess it though based on his constant smiles and bright eyes. We will likely be here for another week or so, but that is much better than if we hadn’t gotten the BabyBIG medicine- kids that don’t get the antitoxin typically have a hospital stay of 5 to 6 weeks. However, even when we get released, it will still be another three months or so until Teddy is back to normal, and all of his nerves and muscles are connected in the right way again. Regardless, he is expected to make a total and complete recovery, with no lingering effects, which we are supremely grateful for.
Which brings us full circle to those pesky plans we wrote in the sand… well, we’re obviously not going to attempt our first season aboard with a recuperating noodle necked child. And in any case, the weather window for heading south will have long since closed by the time Roosevelt is better. Likewise, moving back to our tiny boat with three manic hooligans aboard for a cramped winter on the Chesapeake promises to be about as cold, wet and miserable as it sounds. Which leaves us with the somewhat deflating, but only practical choice, of staying put, here in Colorado for the winter. But I’m making it sound worse than it is- we do love it here, and it will be great to slow down a bit after being on the move for the better part of a year. Teddy’s rehabilitation will be priority number one, reconnecting with friends and family will also be a primary focus, and fixing up our house to rent or sell will likely occupy the rest of our time.
At first it seemed to me like this was a defeat, and that we narrowly missed our only chance after we spent so much time, money and elbow grease investing in this crazy sailing idea, a true horseshoes and hand grenades situation. But over the last week I have come to terms with it, I have come to appreciate the truly fortunate set of circumstances that this turned out to be- really, we would be in a much worse place if this had happened just a couple of days prior or a few weeks after it did, possibly the worst place of all. But now, it’s clear that this will be an invaluable pause to our frantic preparations, letting us regroup, get our full strength ready, and prepare for the final all-out assault on the life of leisure next spring!
Most of the following photos are from random outings in Annapolis during August and September that I had intended to post some time ago, and some are from our time here in Colorado and in the hospital…
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