Sunday, November 22, 2015

How Not to Recover From Surgery or How I ended up in Quarantine

I have to admit, I have style. I don't do anything the easy way, and when I do something, I commit to it 100%. Day 2 of recovering from surgery to get my GTube placed didn't go as planned, even if it did start off with the idea that I'd be going home today (day 3), plans can go horribly wrong.

It started off with just normal recovery pain and the day went downhill dramatically from there. In the morning, my mom noticed that I was started to get a rash across the belly. The doctor wasn't sure if it was some irritation from the surgical soap, so we took a wait & see approach. We still planned on going home.

The afternoon came, as it tends to do since it follows the morning, and the rash has now spread to the other side of my stomach. Not only that but I'm having a lot of sinus tachycardia. It's now starting to get to be a bit more of a concern, and the nurse mentioned it to the doctor but the doctor still felt that it was a reaction to something.

Finally, the evening comes. The rash has now taken over most of my abdomen. The nurse put in a call to the general pediatrician team to come have a look and when they do the last thing I expected to hear is what I heard: We think it's chicken pox. 

The doctor gave me a dose of Benadryl to try to calm the itching and rule out an allergic reaction. The rash didn't react to the Benadryl, but my heart sure did. I became extremely dizzy, feeling like I was going to pass out and shaking. I later found out that Benadryl is a potential "conditional" medication for a prolonged QT rate of the heart, which is a fancy way of saying that given the right circumstances, the medication may put me at higher risk of having a "heart event". Benadryl is so not a good idea so I lay here rubbing my itchies on the bed.

By 2am, the doctors has been in to look at the rash about 4 times. They decided that I needed to have skin biopsies done to test for infections. At about 3:30am they took a needle and poked about 8-9 different spots that I had in hopes of getting a sample with enough stuff that they could test. Then they had to send for the IV team to start a new IV after I blew the other, and to get bloodwork at the same time.

4:30am and the IV team showed up, they were able to finally find a vein, which was really exciting for me. They immediately started acyclovir, a powerful anti-viral because I have very little of an immune system left thanks to the medications that I'm on.

By 5am I was finally moved to the quarantine ward as they wait for answers to the question that's on everyone's mind "What's eating Jacob?". Since I was moved to a different ward, of course that means a new team and a new intake which ended with the nurses saying that we could expect some company at 7am to do a nursing shift-change. I think this was about the point in time when I realized that day 2 & 3 were just going to be one very, very long day. I'm obviously not going home today.

I've been vaccinated against chicken pox. Unfortunately for some kids who have been immuno-suppressed like me, can lose their antibodies to the vaccines they have had. This is why it's so important to have vaccinations. Chicken pox might seem like a common everyday illness for most kids, but for kids like me it can be dangerous. My heart hasn't settled down yet so I'm still hooked to the monitors, and the pain in my skin has been awful. The antibiotics used to treat the virus could quickly lead to dehydration which wouldn't be good for my heart. There's nothing simple about this "simple childhood illness" for me.

I may have come for the tube, but I'm staying for the quarantine.


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