March 21, 2009

Dispatches from the 5-star hospital resort...

In spite of the hospital's best efforts, Jade is improving.

But maybe I should step back and explain how we got here.

A Disturbing Trend
We're not sure, exactly, what went wrong. After an amazing beginning to the month where she had a bunch of seizure-free days, Jade started moving in the wrong direction. She got lethargic and was having lots of absence seizures and myoclonic jerks. She was gagging on her food. There were no indications that she was fighting a cold or flu. She had no fever. There was nothing obvious to explain why her seizures were getting worse.

The lethargy and staring and twitching started lasting longer and longer - almost exponentially. If you saw her lying on the couch, watching a movie, you would think that she was quite relaxed - except that she NEVER makes it through one whole movie before leaping off the couch to play, let alone two movies.

Through our telephone conversations, the neurology folks were afraid that she was going into "non-convulsive status epilepticcus" which means that they were afraid she was slipping into a permanent state of seizure that doesn't come with any of the body jerking that most people associate with seizures. Have you ever been using a computer when the screen just froze? When everything looked fine, but the mouse wouldn't work and the keyboard wouldn't work? When there were no blue screens or notification messages - just a frozen, pretty-looking screen that looked exactly as you left it, while the hard drive churned and churned and churned away? That's pretty much what non-convulsive status epilepticcus is.

Talking back and forth with the neurology team, and after getting some blood taken at the hospital in Whitehorse (where she got stuck in the arms five times before the nurses called the blood lab for the sixth, successful, stabbing), the decision was made to fly her down to Vancouver.

Flying on short notice
Jade had perked up a bit at the hospital in Whitehorse, but fell asleep on the couch the second we got home. Fawn and I had 45 minutes to pack and prepare keto-meals for Jade (we couldn't trust that they would have any for her at the hospital when we arrived, and we couldn't exactly say, "Oh, no biggie! She can have a cheeseburger tonight!"). I packed and Fawn zipped around the kitchen, focused on making as many meals as possible before our flight. Fawn was an amazing sight to behold as she zigzagged around the kitchen in a flurry of weighing and cooking and labeling. The phone rang incessantly as arrangements were made for the flight. I shoved a couple of pieces of pizza down my throat (ordering pizza the night before turned out to be a brilliant bit of unintentional foresight). Fawn stayed home with Halia, who, by then, was having a pay-attention-to-me-gosh-darn-it breakdown while Karyn drove Jade and me down to the airport.

The flight consisted of Jade trying to nap, having occasional bursts of playfulness, and trying to nap again. When we got to Vancouver, we took a taxi to the hospital and walked into Emergency at 17:00, where they were expecting us.

At this particular hospital's Emergency ward, they have an interesting admittance and triage system. First, you go to Booth #1 where you're asked the reason for your visit. If you're lucky, like me, they'll have a note from Neurology that says they're to be phoned as soon as you arrive. Then, you're directed to Booth #2, where you're registered. Then, you're told to go sit down and wait. Later, you're brought back to Booth #1, where you're weighed and your vitals are taken. Then, you're told to go sit down and wait again. If, after almost two hours of waiting, you let them know that your kid gets worse seizures from sleep deprivation and that she'll need to go to bed soon, they will inform you that their one-and-only ER doctor must see you before the neurologists that were expecting you (and who had left a message for the emergency desk to call them right when you arrived - I know because I saw it) can see you. If, like me, you think that having to see a doctor that you don't need to see before you see the doctors that were expecting to see you can see you is stupid, you call your wife in Whitehorse, tell her the situation, and have her call Neurology. Later, your wife calls you back, informs you that Neurology received the call a half-hour ago - several hours after they were supposed to be called - and that the Neurologist is at the ER now and will see you shortly. Not long after that, the Neurologist will arrive, but it won't be just any Neurologist, it will be a Resident Neurologist, which is a fancy title for someone whose real title should be "A doctor-in-training who's going to ask you the patient's complete history for the millionth time before they take it to the Neurologist-on-Call who already knows the patient's complete history to see what, if anything, they should do about it." When the Resident Neurologist finally gets back to you, you will be informed that you will be staying in the hospital and that a room is all ready - but that it will take a little while to process the paper work...

Thank goodness for my brother- and sister-in-law who brought me food. Thank goodness that I had Jade's food with me.

Jade finally fell asleep at 23:00, four hours after her normal bed time. Other than "some bloodwork and an EEG first thing in the morning", I didn't know what was in store for her.

Our Hospital Room
Our room was the lap of luxury.


When I was five-years-old, or so, I met a kid with a hunched back for the first time. I wondered how his back got that way. He must have slept in the same pull-out chair that I had to sleep in.

The room was a private room in the sense that there was a curtain between us and family on the other side. Unfortunately, it was not a very effective noise-blocking curtain and the family on the other side was loud. The washroom was a shared washroom without a shower. When you're staying at a hospital for an indefinite period with only a few changes of clothes (and one pair of pants), showers a good things for everyone. The door for the washroom was right beside Jade's bed and one of our bathroom mates had urinary problems (and screamed every time he peed, poor kid). The nurses really, really, really wanted to check Jade's vitals every hour, but I wouldn't let them. Let's just say that conditions in the hospital room weren't very good for a kid whose seizures get worse from sleep deprivation.

There was no food for me (which is not exactly true, because there were crackers in the kitchen area and my brother- and sister-in-law brought me some snacks). All of the play rooms were quarantined because of a Norwalk outbreak (so there was nothing for Jade - or any of the kids - to play with).

Let's just say that, on the whole, Jade was probably in more danger of having her seizures worsen at the hospital than she would had we been staying somewhere near the hospital.

(Oh, and if you're one of those parents who takes both of your kids to the hospital because they're coughing and have a mild fever - but are still well enough to run around and play with all the toys - and you're coughing and have a mild fever and your spouse is coughing and has a mild fever, DON'T GO TO THE HOSPITAL! You'll all got a virus. You'll get over it! Don't give it to everyone else!)

Relief Comes When It's Least Expected
In spite of the situation, Jade's seizures improved somewhat. She had her EEG, which went well, and she had her blood work, which also went well (even after all that poking the day before, she still didn't flinch). Her food went down without complaint. She was a little overtired and didn't go down well for her nap (on account of the noise in the room "next to ours"), but was doing fairly well when she awoke.

They wanted a urine sample from her and, since she's not yet potty trained, I had to stick a pee bag to her. The pee bags are nothing more than a plastic bag with a sticky end that covers the parts that eject the pee. I figured that she'd go shortly after waking from her nap, so I picked her up and put her on my lap, that way, she'd be sitting upright during her pee. Unfortunately, the pee bags don't seal things perfectly and I knew it would leak all over the place if she were lying down.

As I said, the pee bags don't seal things perfectly. When she peed, sitting on my lap, it leaked out onto the bed, but also onto me and my only pair of pants.

With the help of a nurse (all of the nurses were very nice), I located the laundry room, which is basically a closet with a coin-operated washer and dryer. Just as I was entering the laundry closet, a guy called me by my name.

"Jade's dad?" he asked.

After a brief introduction, I now found myself standing in the closet-sized laundry room with Jade and the hospital's other neurologist who specializes in the ketogenic diet (our regular neurologist is out of town). I thought it seemed like a weird way to meet with a patient; standing there in pee-soaked pants in a closet-sized laundry room, but judging the doctor's comfort with the situation, this was a preferred way to meet with his patients.

We talked about a plan of action for getting Jade's seizures under control. And by "under control", he meant "eliminated completely". He explained that, with Jade's type of epilepsy, there is a good chance that we can get rid of the seizures altogether. That was the fist time I've ever heard that and it was invigorating to hear it from someone who has so much experience in the field.

I also liked his, "let's do what makes sense and not what's dictated by policy" approach. He listened to my concerns about Jade's poor sleep in the hospital and we worked out a way to keep an eye on her while implementing a day of fasting (to bolster the effects of the ketogenic diet) and doing a medicine wean.

There was a smile on my face when I packed our bags and left the hospital for a nice, quiet room, kitchenette, playroom and shower at Easter Seal House.

Jade slept very well.

I breathed a sigh of relief.

More updates to follow when I can get to them...


Anonymous said...

Thak you Michael for the updated posting. you are a wonderful dad. Take care yourself too.

We love you, and give Jade a big hug from Nainai.

Anonymous said...

I'll echo anonymous when she says to take care of yourself also. Remember that we can't take care of those we love when we're in need of care ourselves (its my "don your oxygen mask before assisting others" philosophy of life).

It sounds like you had a hospital experience filled with bad experiences and one very big good one. Hospitals are bureaucracies, filled with many people running in several different directions at once. Often the only way to ensure that someone gets the good care they need is to have a love one press for it at every opportunity and to help with that care. Such as you are doing.

But they also contain a lot of people who do care about getting people better, and don't my talking about that in a closet with someone who appears to have been incontinent. You seem to have found at least one of those people, and that is great. Hopefully you will be able to eliminate Jade's seizures completely. I look forward to that day for you family.

Take care my friend.

Anonymous said...

Michael, thanks so much for the update. We've been waiting anxiously for more news and realize how busy you've been.
You're the best and Jade is lucky to have you and Fawn as parents.
Love and hugs.
Hello to Nainai

Jennybell said...

Glad to hear she's doing better! Maybe this will all work out for the best.

Carolyn said...

Thank you for sharing Michael and I a pleased that Jade is doing better. Take care of your self.
Blessings and smiles

Every Photo Tells A Story said...

Well, thank goodness Jade is doing much better, Michael. Especially after that experience in the hospital. We are fortunate to have hospital care, but since human beings run them, we all know the "imperfections" that exist. It's unfortunate and frustrating and even scary, but the bottom line here is that your beautiful daugher is improving, and you are all back home where you belong. There are a lot of people praying for Jade, and I'm one of them:)

APF said...

What a trooper she is. Hang in there you guys.

Anonymous said...

Amen to the aforementioned - and when you get a chance, will you try to find out the rationale for getting a father's vitals when checking in a sick kid? Maybe they need to figure out the right dose of sedative to sneak into dad's pizza to keep him docile while working on the kid.

Karyn said...

Its great to hear that Jade is doing better...we have been thinking of you guys and hoping that things are going well. Hopefully things continue to improve and that life can finally return to "normal". Jade's an amazing little girl!

Anonymous said...

Sounds like you found a doctor who's going to take care of business. That's great news!

Good luck!