Neverland Without a GPS

Caleb got very sick this weekend and quickly reminded me of two things: 1) the only time he will cuddle with me is when he’s sick and 2) the minute he’s sick I scramble all of my medical knowledge and treatments with the dizzying speed of the Avengers assembling.

I’ve written before that for the first two years of his life, Caleb was sick for at least two weeks of every month. I mean 105-degree-fevers-that-sapped-all-of-his-energy sicknesses. The hallmark of 22Q Deletion Syndrome is a missing thymus, which is 1/3 of a healthy immune system.

Without the thymus, Caleb is extremely vulnerable to viruses, but any illness can typically attach and hang on for much longer than it would in a healthy person. Because he can’t communicate well, I have to pay close attention to whatever symptoms are obvious and try to treat them.

Every illness takes me back to those two years and I find myself bracing for the worst news. I never want Caleb to feel anything but protected and safe, while I crumble inside fearing what is next.

Caleb’s language is extremely delayed and disordered—most people can understand a word or two that he says, but he also speaks like someone who is native in another language. He leaves out articles, only knows male pronouns, and usually only knows one tense of a verb.  With me, because we are together all the time, I can understand almost everything he says.

It sucks when any kid is sick. Every parent feels that helplessness and that unfulfilled wish to take their kid’s place when they are in pain. But with Caleb, each illness could potentially put him in the hospital. Each illness stirs up fear and dread, and I know from its onset that I won’t sleep until he’s better.

This language barrier makes it extraordinarily difficult to treat Caleb when he is sick. Even though he is 6’2” a doctor has to treat him like he is a toddler, who can’t say exactly where they hurt or what is wrong. Caleb is the antithesis of Dr. Theodore Woodward’s precept of:  “When you hear hoofbeats, think of horses not zebras.” Dr. Woodward wanted to teach his medical interns that a simple diagnosis is more likely than a rare one. This is not the case with my sweet Caleb. He is always, always a zebra. What may present as an ear infection in a neurotypical kid will likely be a urinary tract infection in Caleb.

The way Caleb’s medical history has worked out is that he gets a pediatrician, it takes them a year or two to understand the zebra approach, and then, for various reasons, we have moved. He has seen his current pediatrician, whom we both adore, for almost two years now, but she informed me on a recent visit that he will age out of her practice next month. I understand—there are one day-old babies, toddlers and elementary school kids, and then my gentle giant and I walk in. I’m hoping to get one more visit with her tomorrow because she totally and completely understands how to approach any illness with which Caleb presents.

Last night, Caleb developed a cough in the late afternoon and asked to go to bed a half hour early. This morning, he woke after sleeping 15 hours with glazed eyes and a voice which my daughter lovingly likened to the late Joan Rivers. At that point, his fever was 98.9 (his normal is 97.5), so I gave him breakfast, lots of water and tucked him back into bed. He slept a few more hours then came down to eat lunch and have more fluids pushed at him. A little while later, on my millionth hand-on-the-forehead of the day, he was burning up with a temperature of 101.6.

Because he can’t regulate his body temperature on a good day, this climbing fever is bad news. I am fully anticipating a 2:00 AM wakeup call where his fever is over 103. The immune system shuts down a bit during the night and this scenario is all but guaranteed.

My arsenal of treatments for Caleb is extensive. Whenever he enters our home from anywhere, he washes his hands. I sterilize door handles, faucet handles, remotes and light switches once a week. I have backups to already-full containers of acetaminophen, ibuprofen and Benadryl. I have unopened containers of cough medicine. There have been times where I couldn’t get him to a doctor or urgent care office, so I have to be prepared to nurse him through a day or two without formal treatment.

Today I had an epiphany that makes me want to slap my forehead like those poor people in the V8 commercials. Caleb can’t swallow medications so for 8 years I have run to the computer for every fever, trying to calculate the correct dosage by weight of children’s liquid pain relievers. These are gloppy, heavy liquids and sometimes Caleb would need 6 teaspoons or more of one, then 6 or more of another (ibuprofen and acetaminophen don’t work on their own against Caleb’s inability to regulate his body temperature, so I have to alternate doses every two hours).

Today, voila, I finally figured out I could crush the adult pills, like I do with his other meds, and put them in a shot glass of chocolate milk. He was incredibly relieved to take meds this way and I sat there scratching my head and wondering what took me so long to come up with this one.

About 98% of the time, when we do go to the doctor, Caleb has a viral infection. He receives regular flu and pneumococcal vaccines, and he received one for meningitis. Without these vaccines, Caleb’s weak immune system would be far too vulnerable. With them, he still gets sick, but it seems to be a less life-threatening illness for him. I expect when we see the doctor tomorrow she will tell me it’s viral, but on the microscopic chance that it’s bacterial, we have to act early and get ahead of it so that it doesn’t become too strong for Caleb to fight. A few years ago, Caleb contracted a virus that lasted 21 days. I never want for him to have to go through something like that again.

Caleb’s been sleeping beside me as I write this and I marvel at how well he listens to his own body. How many of us, when we’re sick, tough it out or act like we are so strong we don’t need to rest? He is so much wiser than me and I’m sure if I had posed the problem of liquid medication dosages to him, he would have figured it out 8 years ago.

For now, I am praying that all he is doing to take care of himself works and that he is back to his happy, joking self very soon. The house feels way too quiet without his laughter.