Monday, April 18, 2016

about an mri, an eeg, and a wheelchair heist

Our day started at 4:15 am in an attempt to beat the Boston crazy commuters. It was non-successful (don't you people sleep!?) but at least we made it to our appointment on time. 

The MRI was rough.

We'd attempted an unsedated MRI a couple months ago, which was a big fat fail. The terror memories were lingering in Trevy's mind and it didn't take long before he was begging us to "go home now" and telling us "I hate this so much!" There is no balm to make this process easier for him or us.

It never gets easier to sedate him. Even for simple procedures like MRIs.

I know the staff are trying to be helpful when they say things like, "Well, that went pretty well compared to last time." I know the intent is to be helpful, but it misses the mark. There is not a singular moment that doesn't suck about this. Kids aren't supposed to be in hospitals. They're certainly not supposed to be scared out of their minds one minute and in a drug induced sleep coma the next. Trevor is supposed to be hiking, throwing rocks into the sea, shooting hoops. Not this. So if you really want to know, no, it did NOT go well. Not compared to anything.

Jonathan thought I was crazy because I decided to kill the three hour wait between MRI and EEG admission by heisting a hospital wheelchair and walking the streets of Boston. Technically, I had permission. When I asked the nurse if we could wheel him outside of the building she may or may not have thought I meant to another wing of the hospital. I decided not to clarify and use the opportunity to explore instead! Something a rookie hospital parent would probably never dream of doing. But we aren't rookies anymore! Maybe people wouldn't have stared so hard if Trevy weren't in hospital issued jammies with an IV peeking from under his blanket. Let them stare, I said. We've done this too many times and I knew once the paperwork was signed we would be hospital hostages.

The EEG hook up was difficult too. Trevor's sensory sensitivities are through the roof right now. We're not sure why. In that moment, it didn't even matter. All that mattered was helping him feel safe. He was convinced the glue was going to drip into his eyes and it scared him. 

More than once I was thankful I had Jonathan with me. I don't know how parents endure this stuff solo. I'm a wimp.

Once he was all hooked up, we had smiles again. 

Trevor definitely makes "mummy head" look adorable! He was charming the socks off all the staff.

And I must say, Tufts has a wonderful VEEG suite. It was spacious and private. They rolled in a cot for one parent. The other parent had a special "parent room" to sleep in. They can't promise the parent rooms will be open, but we've been to several different children's hospital and this is the only one to offer such a thing. 

Thankfully the discharge wasn't as painful as it could have been. For those that haven't had the pleasure of being in-patient, the discharge process moves like molasses! We were home, and reunited with our other children, by 5pm.

Hopefully these tests help us figure out why Trevor's been in a touchy place and thank God this is done for the next year! 

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