Moving on Up

I really am a trickster. The mom’s keep saying that if I want to learn a new trick that I should take up something like skydiving or swimming with sharks – you know, something safe. They also say that if I really miss Sick Kids that they’ll just bring me for a visit; that I don’t have to hold my breath until I get what I want. The truth is I don’t know why I’m back here but it sounds like I’m doing okay.

I finally really woke up yesterday. Between the sedation drugs for my EEG and MRI and trying to get my seizure medications working I had been pretty out of it. But when I woke up yesterday I started to feel more like myself – although a crankier version. I did wake up to a nice surprise though: the nurses in PICU had been laughing at my pigtails because they were done with actual elastics so one of them stopped by and dropped off a package of new hair elastics! So after my bath, where Mama C cleaned off all of the left over tape from the ventilator and CPAP mask, she used the new elastics to make all new pigtails.

The doctors in PICU decided that because I didn’t need any more help breathing and it had been almost 48 hours since my last seizure it was time for me to give up my PICU space. The only issue was that they didn’t know where to put me. At first they thought I would go to the cardiac floor, because that’s where I always go but they only had room for 2 kids and technically my heart is fine. In the end they decided that I would go upstairs to the general pediatrics/complex care area so that I can have 1 doctor who will coordinate all of my care: cardiology, neurology and GI. So, yesterday afternoon they pulled my chest tube out and I said goodbye (hopefully for the last time) to the PICU. Mommy had insisted that Mama C take the afternoon off because she hadn’t really left my room for more than an hour since we got here, so she and I (and then Tricia too) got settled in my new room, met my new nurse and then Mommy said goodnight – the mom’s weren’t expecting me to move so soon so they didn’t have any of their stuff. It’s nice here and I’ve already had visitors! Theresa and Jason brought my Joey to play and 2 of my favorite nurses from the cardiac floor came by to make sure I was okay too.

We don’t know how long I’ll be in the hospital still. The nurse told Mommy last night that if I keep doing so well that I might be able to go home this week but the mom’s didn’t look too happy about that. The doctors don’t know exactly why this all happened and have yet to share their theories with us so the mom’s don’t really want me to go home until someone can tell them that they’re confident it won’t happen again or until they get a monitor and/or a defibulator. They also haven’t really had a chance to talk to the neurologist to figure out how we treat my brain injury – do I go to rehab or is it not so bad that I could just go home and keep working with my OT? I have been having trouble making eye contact, although I will try and look at you if you are in my line of sight. I can’t track anything with my eyes either, which really makes the mom’s worry because I was really good at that before my brain had no oxygen. But the mom’s are trying to be optimistic and so I will try and be too.

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