PICU

I was stressed about it happening since I got the text.  My stress was nothing compared to the stress of the family sitting there, caring, wondering and taking every bit of strength left in their already worn down minds.  Instead of celebrating Christmas, sitting in the Pediatric Intensive Care Unit (PICU).    

How many of us who live this life with the medically fragile child have been there?  Most of us.  This was an unexpected one.  A simple procedure that went south very quickly.  And this lovely family, friends of ours, had been dealing with the admission for many weeks, nine weeks to be exact, and two holidays.  It’s hard to survive one holiday upon admission but two are cruel.  Not to mention that many days of wondering and waiting for answers, not the usual, much more waiting than normal.     

I worked all day, dreading the initial walk in.  There are no words to explain the vision and horrible reality of seeing a very small child, small in physical body like ours with Wolf-Hirschhorn Syndrome laying in a hospital bed.  It just swallows them up.  Laying there with so many tubes and IVs in them that you wonder how they can even tell each tube apart.  A nurse there almost constantly.  Checking, poking, turning, moving.  It is the fact in your face that things are very, very serious.  Tubes with blood circulating, cannulas over their face.  And the sweet little face covered and not able to make any eye contact.  They are sedated and hopefully dreaming of a better atmosphere.  The scene is so very difficult and heartbreaking.  

I wanted to go visit but did not want this happening to them, to Lily.  As I drove down I-94 I turned on my stereo, not wanting Christmas music, Christmas has passed, not for me but for Lily.  I wanted real life to be back for her.  The stereo played Guns and Roses.  “Every rose has it’s thorn . . . . ”  The lyrics played through my stereo.  I thought how appropriate that was for now.  I listened to the song just for Lily just for what she was going through.  I prayed for her, I asked for her to stop having these “thorns.”  Funny how a song can take on a whole new meaning. I made all the lyrics fit Lily.  My eyes welled up with tears.  I had to suck them back in so I could drive.  There was no traffic.  It was  a holiday week and I thanked the stars for this.  It was nice not to fight traffic and emotions.  

As I entered Mott Children’s Hospital I again, felt the feeling that this could be us, has been us, and I hated and hurt that this family has been there so long.  I just kept thinking the care is here, she is getting the best care.  I found an awesome parking spot, that was nice.  

I gave my name at the desk and got my badge to wear.  I went up the elevators.  I knew it would be emotional on the most intense floor there.  I reminded myself we are Warriors.  We are born to do these visits.  We are groomed from the time the child is diagnosed for the reality of many hospital stays.  Like we are military people on deployment.  We go into action and we use our trained skills.  We push through it.  We take out our armor and shields and we use them.   

I knew it was room 10 but they all had a “10” on the room.  I asked someone where the room I was looking for room Floor 10 Room 10.  Then I saw Lily’s dad.  I saw him coming toward me.  It hurt immediately, I did not want them there and it was real that he was coming to get me to walk me there.  We stopped in front of Lily’s bed and the tears poured.  The only thing I could see is this tiny little face with all the stuff described above.  Mom came over, sweet wonderful Nicole.  She tried to distract me, (and probably herself from the reality), “Look at her awesome braids, look how pretty they are.”  She had these long, elegant and perfect braids going up on the bed with the cutest headband with a bow on it.  The braids laid down on th white sheet looking more beautiful than you can imagine.  She had a fleece blanket (the ones we all get when our kiddos are in the hospital for far too long) and the machines hummed and the staff on the floor scurried about.  Tears rolled down my cheeks and we all hugged.  I did not want to get too close to Lily but I did say hello and I loved her hair., I told her sweet little face that she looked great. She had been heavily sedated to keep her still.  Our kids with WHS are fighters, they take a lot to stop moving.  

We went over to the window seat, which is doubling for mom’s bed.  We talked, and dad offered me a slush.  I thought to myself, how sweet and kind this is. They are the ones bearing all this weight on their hearts.  They are offering me a beverage like we are home in their living room.  A slushy?  “Sure, I said let’s have slushies while we talk and catch up on Lily.”  Nicole and I began our catch up on all that had transpired.  Needless to say, it was a horrible whirlwind of events that just landed her in the PICU.  

A normal procedure went south very quickly.  Mom was told that Lily had been whisked up to PICU and they hoped she could see her soon. Nicole had to move (or thought she had to) move items from a room full of unopened Christmas gifts so that she could go sit vigil with Lily in the worst floor of the hospital for your child to be moved to. Luckily the nurses helped her get organized and let her know she could just store those things.  I can’t imagine the stress of it all.  One minute your in a private room full of Christmas gifts awaiting all to come up and do Christmas at the hospital and the next few hours trying to move your whole life that was in the room for weeks to go sit in the PICU? Good Lord.  This is heartbreaking.  

We continued to catch up and then the doctors came to do the daily night round.  Nicole went over to listen.  Soon she came back and was crying.  We just sat there and waited, good?  Bad?  What are the tears from?  We know that things can move so quickly on this floor.  Your child looks great and but they may come and say that things are bad with the latest test, labs, proding, whatever, it can be so much.  Nicole tells us that Lily is doing so well that she will be moving off some of the equipment soon, maybe by morning.  Oh, yes!  Yes and more like, hell yes!  An excellent report, and excellent prognosis.  Not anywhere near out of the hospital yet, a ways to go.  We will take any progress and love and embrace the improvement.  

This is Lily.  A strong reminder of her strength and endurance.  But let’s keep in mind our Warrior mother.  One of our own.  She is working from the bedside on a laptop, she is showering only when the “time is right.”  She is eating when the time allows, worrying all the time, thinking what life might be like when the time comes to leave.  Thinking about another grown child at home that misses her.  Trying to make Christmas happen still when Lily is awake and there is not an atmosphere of seriousness around her. All the things that come with these times when we have to pull out our swords.  Say a special prayer for all those involved.  This is their life until it is not.  Nobody knows that date.  I’ll be visiting again soon and keep all of you lovely readers posted.  Hats off to Nicole and her family for doing this that nobody ever wants to do.  But we do because we choose to, we put the strength into it. We are Warriors.

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