The Good, The Bad, & The Ugly

I guess when you are the part of any system for an extended period of time you get to see all sides of the situation.  First you are so excited to have all these resources at your fingertips and all these experts championing for your child.  Then you get frustrated by lack of communication, having to fix the same issues every day with medicine schedules or meal deliveries, and general falling short of expectations for things as basic as emptying your trash (I had to ask repeatedly for it to be emptied yesterday as his garbage was so full I couldn’t fit another diaper in there).  Finally you not only start to learn what is broken, but you also start to feel broken yourself as bigger issues rear their ugly heads and the reality of your neighbors truly sets in.  This is where we are right now.

So the good.  We love the therapists we love.  They are working so hard for us and personally I really enjoy seeing them.  In fact I have crushes on his PT and his OT, and the fact that his speech pathologist was my sorority sister at Michigan just makes me feel like my team is truly on my side.

The bad.  When my team members aren’t available it can feel like we struggle just to make it through the sessions.  One hand doesn’t always know what the other is doing, and progress seems to come to a bit of a stand still when they aren’t here.  Very frustrating for me, and I end up having to sing for an entire hour just to keep him semi happy to get to the end. We’ve rolled over, but we still aren’t sitting up on our own and tummy time really pisses us off.  His elbows are getting stiff as we are reworking the elbow splints our OT at home, Kate made us, and his hands have been stiffening up since all the focus has gone to the lower body.  And now we are just over a week from our release date and I’m starting to feel like my expectations were too pie in the sky.

The ugly.  Last week Aleck threw up 4 out of 5 nights in a row, his entire dinner.  In just a week he lost 8 ounces on his teeny little frame.  He started having more trouble during his therapy sessions, unable to get him happy, and therefore not making any progress. We scheduled for a GI appointment for Friday and were trying to hold off getting crazy until then but on Friday the GI had to reschedule until Tuesday, and I just lost my shit completely.  So I threw in the towel, and we put a feeding tube, an NG tube, up Aleck’s nose that empties into his tummy.  I cried all day, and so did Aleck.  But in less than 24 hours he gained back all the weight and then some.  The tube is actually what got him to start rolling over since he was trying to rub the tape off his face (Big PT goal met!).  And in a place like this I have nurses to hook him up and disconnect him with every feeding, and he’s just one of many kids with a tube out their nose.  We are certainly in good company.

And that’s the thing with this place.  Whatever ails you, not only do you have company and other parents to discuss the ups and downs of the feeding tube with, but very often the story around the corner, or even in the bed next door helps to put it all in perspective, like our roommate here at the RIC does for us everyday.

Kayla is 18 years old, she celebrated her 18th birthday here, and she’s been here for a while.  You might think that’s so unusual, to pair an 18 year old with a 12 month old, but unfortunately for Kayla its the perfect pairing.  While walking home from her job at McDonald’s Kayla was hit by a drunk driver, his 3rd DUI.  She can’t talk.  She can’t walk.  She can’t eat. She can’t go to the bathroom. She can’t move the majority of her body minus a thumb movement of thumbs up to help the staff figure out her desires, and she’s still working on getting her eyes open to make eye contact.  Kayla doesn’t even resemble the poster boards of pictures of the Kayla before.  When her dad comes to visit, about once a week since they live south of Joliet, he sits in the room in the dark holding her hand and crying.  It’s heartbreaking.  She has made progress since we’ve gotten here, and the staff is very hopeful she’ll continue to make progress, but as her brother says, she won’t be the same Kayla they knew and loved.  And as I try to say hopeful things to her dad or her friends when they stop by for a visit, I barely believe them myself.  And even worse, I know her dad is questioning why she even survived the accident, would she have been better off…

I simply can’t say it or type it.

I try so hard not to think about it as I go to sleep.  I try not to think about it as the staff comes in every four hours to take her AFO’s or braces on and off, every 6 to do her feeding tube, every 3 for her various medications, every two to change her diapers, every hour to check her breathing, everyday to bathe her and dress her.  Though against hospital policy, I’ve been keeping an open bottle of red wine in my room to help knock me out and relax through the night, keeping me asleep through many of her nightly visits.  Craig is amazing when he’s here, opening up the curtain between our sides so she can look out the window, asking her what television channels she wants to watch so she doesn’t just sit in total silence, and we both bring Aleck over for a little extra stimulation when we can.

As ugly it got here with Aleck last week, as frightened and worried I was for his little body, his tiny organs, his sweet little heart, it’s nothing compared with what’s going on in the bed next to us.  A feeling I try to hold with me throughout each challenging day.