A Day in the Life

Today marks my 60th day in the hospital.  I’ve come to realize that this is a really long time because even my favourite nurse, Shelly (who comes to visit and play with me whenever she’s working, even when she’s not my nurse) has told me that I really need to go home and not come back for a long time.  She says that I can visit whenever I want when I come to clinic, but that I should really get a life outside of the atrium walls.

But the thing is, my life here, minus all the poking and prodding, isn’t really so bad.  I know, in all my rambling, that it can seem like we’re not having a lot of fun and sometimes that true, but most days I’m actually feeling really well and we try and keep me as entertained as possible.

Most mornings I like to wake up around 6:30am.  I like this the best because it’s just before the nurse changeover happens, so unless something is wrong, a nurse won’t come in and bug me until at least 8am and probably closer to 8:30am.  This means that I get some serious snuggle time with the mom who has spent the night with me.  We like to sit in the rocking chair, hook up my Ng tube for some breakfast and watch tv together.  Since it takes me an hour and a half to eat, it’s a really nice way to spend the first part of my morning.  If it’s Mama C who’s stayed with me, right after breakfast means that it’s time to clean up before the day nurse comes to check my vitals.  We either have a quick bath or just a wash down before the dreaded hair time begins.  My hair has gotten very very long and since I’ve decided to take up permanent residence here, the mom’s haven’t been able to get it cut.  It also gets tangled very easily if we leave it down, so while I scream and scream, Mama C works out the tangles and then puts it my pigtails.  They’re very cute (I’ve seen the pictures) but I’ll be happy when the bottom layer is a little longer so that we can do something else.  Then the day nurse comes in, fawns over me for a bit (if I’m feeling happy, I’ll totally throw them some smiles so that they think I’m extra cute) and then I get weighed and all checked out.  By that time, I’m totally exhausted and I usually settle down for a bit of a catnap.  Mama C says that I sleep much MUCH better at home, but because I spend so much time in my bed here, short ones are okay.

When I wake up, the doctors are usually coming around to tell the mom’s and dad’s how their kids are doing.  This is Mama C’s favourite part of the day.  She says that sometimes the doctors use bigger words with each other then when they’re explaining stuff to the mom’s one on one, so she listens carefully to understand what’s really going on (and not the dumbed down version).   This is the part of the day that goes by the fastest, because the doctor’s all come back again after rounds to actually check on how I’m doing and make plans for what they’re going to do with me next.   At some point in all of this madness, the mom’s get out my seat and we work on drinking from the bottle so that my tummy can be nice and empty before my OT Lisa comes in the afternoon.  Spending time with Lisa is my absolute favourite time of the day.  She gets out the big mat and spreads my toys all around and we just get to play! She brings toys that light up and toys that make noise and she puts on music and we sing and bounce.  I’m so tired when we’re done that sometimes I fall asleep right in the middle of the exercises and Lisa and the mom’s laugh at me.  I think when we leave here, I’m going to miss her the most.

The rest of the day is a little quieter.  The mom’s and I spend some time cuddling and playing.  Today Mommy had me playing with her on the mat and we both ended up falling asleep right on the floor! Mama C was already having a nap on the bed, so we had a nice family sleep all together.  When the one mom goes home for the night, then we start to settle down.  We eat dinner and play quietly until I start to drift off.  Sadly, the night nurse always seems to come in to her check on me just as I’m about to fall asleep or just as I drifted off, so normally I wake back up again for a little bit.  Mostly the mom’s leave me alone at that point, because if they hang out at my bedside, I think that it’s time to play again and I start smiling at them and they can’t help but get sucked back in.

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