Staying at the PCMC…
September 22, 2008 | Updates
Well, things are a little off right now. Samuel and I are actually at Primary Children’s Hospital trying to figure out what is bothering him. Basically, the last month has been spent trying to get Samuel back on a schedule where he is able to stay awake for a full morning of school and then tolerate his home therapies in the afternoons. We were just about there last week when he suddenly starting acting really off.
Tuesday all day, Samuel was pretty lethargic. On Wednesday, I had planned to go to school with him for a meeting I had there. Samuel seemed fine all morning, but about 10:30 am, he was suddenly just staring off into space and no longer participating with us at all. By 11 am, he was sound asleep and we simply couldn’t wake him. I watched him pretty closely all day and was convinced he was having silent seizures that he cycled in and out of the entire day. By 5 pm, I decided to take him to the local ER. Honestly, that was a mistake.
We spent 5 hours in the ER. They did a little blood work and didn’t find anything. I explained to them that he never holds still. But it’s hard to explain just how wiggly he normally is. I tried showing them how when he was staring off in space, his arms were tight. But they didn’t feel tight to them because they don’t understand how utterly limp he normally is when holding still. I tried to show them how he would act normal for a few seconds and then flinch and go back to staring off into space for several minutes. But he would also respond to sound and track them, so they didn’t consider it a problem. In the end, he WATCHED the nurse remove all the tape and IV from his hand without the slightest bit of protest and I knew he was not feeling well, still. But I couldn’t convince them. They sent me home with a piece of paper on how to deal with muscle spasms. If you know Samuel’s history with severe posturing, you’ll know that was about the equivalent of slapping me in the face. In their defense, they don’t know Samuel and don’t deal with kids like him often. But I wish they would learn to listen to mothers more than blood tests - because something just wasn’t right.
Thursday was the same. Samuel was extremely lethergic. I spoke with the neurologist on call at Primary Children’s 3 different times between Wednesday and Thursday and once with our neurologist on Thursday. Finally, I was given some Diastat to give to Samuel on the assumption that if he was having continuous seizures, the Diastat should stop them. The Diastat put Samuel out cold for a good 14 hours. And Friday morning, he seemed more alert. So, we loaded the car and headed out of town for a short trip we had planned weeks before.
By Friday afternoon, it was clear Samuel wasn’t feeling much better. I watched him closely for the duration of the trip. Ridiculously enough, as we packed up to come home Sunday morning, I realized I had a bladder infection and spent the whole afternoon trying to get myself taken care of so we could get Samuel to Primary’s. Then Sunday evening, we headed down to Salt Lake and checked Samuel into the ER. I had done all the begging I could to try and get Samuel in for a neurology appointment without having to go through the ER, but they are scheduled months out and said the only option for seeing them was to come through the ER. So, here we are.
So far, they’ve done an EEG, blood work and urinary samples. We won’t have the results of all that until tomorrow. Basically, Samuel has no syptoms. He has no fever, no vomiting, no cough, no runny nose, no sore through or ear infections, etc. He is just very lethargic…and very twitchy (in my opinion). I am still convinced that it is all due to seizures that are hard to see and fairly silent. Hopefully, we’ll have some answers tomorrow and be home soon. Until then, we’ll be hanging out here.
Honestly, it hasn’t been too horrible. Last time we were staying here was December of 2005 when Samuel had RSV just a few months after we’d spent 8 weeks here. That stay was horrible. I was nearly hyperventilating the entire time scared to death we would be stuck here forever again. This time, I’m just grateful to be here and grateful to have people to are willing to listen to me - despite Samuel’s lack of symptoms. There are doctors here who know him and who know that he is not a kid who holds still. I just can’t tell you the relief to have someone who actually believes there is something wrong and doesn’t treat me like I’m overworrying or crazy. I’m never quite sure how doctors who don’t know him can dare to make any sort of judgements at all. I mean, exactly what standard are they comparing him to? Who knows.
Anyway, keep Samuel in your prayers. Hopefully, our stay won’t be long at all.
Love,
The Jewkes
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