In which I open up and share the, not so fun, experience of Lucien coming down with a rare autoimmune disease.

At Least It Wasn’t Lupus, Part 1

1633 words about life — 18:25 · 4th Jan 2014

The post you’re about to read was not the post I had originally envisioned, obviously. But I thought it would be more honest to actually share and tell the story, than try to pretend everything was fine when it clearly wasn’t.

At the same time, I had already written most of what I had originally envisioned. Which is why I decided to post both, in two very distinct parts. This is Part 1, the story of what actually happened. In Part 2 you can read the post as it was originally meant to be, unfinished as it may be, this way you get to decide if you want to read both or not.

Because there’s no distinct “Yes, this is where it started”, I’ll just start from the day Lucien showed the first of the many symptoms that were to follow.

25th of December, Christmas Day

On Christmas Day we all sat down to eat supper but Lucien seemed more irritable and tired than usual, not wanting any food. He went to sleep without having eaten, which wasn’t much cause to alarm as he tends to do that, when he’s coming down with something like the flu. His eyes seemed a bit red, maybe it’s Conjunctivitis.

He got a fever and woke up a lot that, and the few following nights.

The next few days his fever kept going up and we kept giving some Paracetamol to get it down again and to ease the suffering he seemed to be in. He was couching a lot and secreting phlegm everywhere. It looks like he’s got Conjunctivitis.

We didn’t really do much else these days and soon enough it was weekend. We had thought about calling our GP on Friday to get him checked up but since he was only on his second day of fever we didn’t.

29th of December

Sunday things took a turn for the worse as he started complaining that he couldn’t move his head and that it hurts. At this point we noticed that his cervical lymph nodes are swollen and we conclude that we’re definitely calling his GP tomorrow.

30th of December

In the morning, as I walked to work, I called to book a same-day appointment for him and got one at their—further away—health station. I called my wife, Rebecka, to tell her about this and found out that she was feeling ill as well and wouldn’t be able to take him to the—further away—health station so we agreed that I would take him instead. Talking to a co-worker I told him how Rebecka was also feeling bad and we reassuringly joked that “At least that means it’s not cancer or something autoimmune.”, since it seemed like Rebecka had gotten whatever Lucien was having.

It was raining and Lucien still had a fever but thanks to Steve, and his car, we didn’t have to walk to the GP. Good thing too since when I go to pick him up, he now has a rash as well.

I hate waiting rooms.

After the GP had looked at Lucien, poking and prodding as they do he asked us to go out to the waiting room again as he wanted to consult his paediatric colleague or someone like that.

My first and only thought was, “This is not good. It’s never good when they need to ‘consult’ anyone. Okay, Carlos, deep breath now.”

I really hate waiting rooms.

This is the point where the story starts getting a little less defined, a little more blurry. This is the point where the GP mentions rare autoimmune diseases as he hands me a letter to take with me to the nearest hospital. They’re expecting us, he says.

Expecting both of us to go back to work, Steve had been graciously—That reminds me now, I owe you a lunch Steve—waiting in the car outside the health station but now he got to give us a ride to the hospital instead. I’ve never answered the question, “Has he had all his vaccinations?”, as often I did in the first 24 hours.

His temperature gets measured, I can remember that I think it’s quite high and he’s been having a fever for 5 days now. He cries in defeat as they put in an IV in his left hand—days later I think about how I should have told them to put it in his right hand as we think he’s left-handed—and I put on a DVD of Toy Story for him, to distract him from the chaos I’m trying to make sense of. He might have Scarlett fever. He might have Kawasaki disease. He’s getting admitted to a larger hospital. I haven’t had any breakfast or lunch yet and it’s 15:30, or maybe 16:30 I’m not really sure, but a sandwich and a bottle of Still Spring water does me good.

Lucien lying in a hospital bed.
At least he got to wear this Spiderman shirt.

31st of December, New Year’s Eve

After an insufficient night’s sleep—we were both exhausted but they kept waking him, who in turn woke me, to give him various medications—we wake up in at Tunbridge Wells Hospital. This one so big that it has its own Costa Coffee—Thank [deity] for that—on the ground floor.

I have the second raging migraine within a week but “At least I’m in a hospital”, I think before asking for some painkillers. Turns out, I’m obviously not their patient so they’re prohibited from giving me anything, but this hospital being as big as it is, has a pharmacy on the ground floor. I go there, explain myself and leave with Ibuprofen 400 mg and Paracetamol 500 mg and instructions to take one of the former and two of the latter.

An hour later I’m more or less migraine-free. Seems like I’ve been under-medicating myself all these years.

The doctors have a few candidates for what he might have, one of which is Kawasaki disease but want to keep him admitted so they can observe if he has any more temperature spikes. So, we wait. He responds well to analgesics and they say that Kawasaki patients are usually unresponsive and generally “miserable”, so their prime suspect becomes a Streptococcal infection.

Kawasaki disease is a rare autoimmune condition in which the medium-sized blood vessels throughout the body become inflamed.. It is also known as mucocutaneous lymph node syndrome.

As the rest of the world celebrates the passing of another year, we don’t celebrate anything.

1st of January, New Year’s Day

Another night with unsatisfactory sleep but at least I don’t wake up with a migraine. Lucien appears to have a bit more energy as he requests toast when asked if he wants anything for breakfast. But he only eats a quarter of a slide. The DVD player built into the big fancy TV doesn’t want to read most discs but I get Toy Story—the fifth or sixth watching at this point—to work again.

Knowing I need to stay strong—even though I’m just terrified—I go to the downstairs cafeteria to eat lunch. I have found that it’s important to stay well-fed in situations like these. Whether you want to eat or not.

2nd of January

Lucien’s second day of being considerably more miserable than before, the doctors decide that he probably has Kawasaki disease. I find the lack of self-assurance reassuring. He’s on his 8th day of fever. They say that they will start the treatment later today. I feel like I can exhale a bit.

They put a new IV into his right hand before removing the left one. He cries just as much this time but at least I hold him tighter knowing he won’t like it. At least this time there’s no nurse hovering around me, trying to distract him with a stupid book. Its blinking lights and obnoxiously pedagogic noises only served as a confirmation—None of us care where Peppa Pig is—of the seriousness of the situation last time.

The treatment takes longer than I expect it to but I feel like we both get a “good” night’s sleep for the first time in a while.

3rd of January

He somehow seems better, more himself. The treatment seems to have worked. The doctors say that there’s still complications that can arise as a consequence of Kawasaki disease, which means a visit to another hospital—later on—in London to look at his heart but other than that, he is getting discharged today. I try to figure out how to get home from here and settle on trying our luck with an hour on a bus. Lucien wants to finish watching Deal or No Deal before we leave, I let him.

We’re home—with a bag of medication he’s meant to take for a while—and can finally sit down on the floor for a family hug, neither of us has seen Rebecka since last Monday.

We still have appointments to go, doctors to see but at least the worst part is over, the not-knowing. The waiting.

Continue to Part 2 of At Least It Wasn’t Lupus.

You’ve just read At Least It Wasn’t Lupus, Part 1.

In which, 10 years ago, I wrote 1633 words about life and I covered topics, such as: year-in-review , and father and son .