Chapter 29 - Because life doesn't stop being ridiculous....

I’m in a time warp, or its simply true what they say about time moving SO much faster the older you get.  We are quickly cruising into 2013 being HALF over! -- what???   I suppose time warped, sped up and stood still for us (rinse, repeat as needed) during the past few months mainly because of my son’s surgery.  Without getting into too much medical  detail, he had to have surgery on his kidneys for a condition he was diagnosed with a year ago.  I write about that now in a quick easy sentence as if it wasn’t an awful and scary thing for my husband and I to debate, discuss, research and finally (and rather quickly) agree upon.  But, agree upon it we did and from there, things moved very fast.

My son’s urologist is one of the best, and therefore, getting an appointment with him sometimes takes a while.  With several offices in New York and NJ, and two days a week in the OR, the man’s time is hard to get.  Because of this we were expecting the surgery to be scheduled sometime in the next couple of months, so when the surgical booking staff called us to set up a time, we were shocked when she said, “how’s next Tuesday?”  One week and one day after we were told JD should have the surgery, we were at the hospital checking in for it. 

Because life does not stop being ridiculous, even in the tense and trying moments, I’m going to focus on that.  For the purposes of this blog, I won’t get into the complete and utter wreck we were watching our son go through this.  Also, now that we’re on this side of it and he has recovered SO well, it’s much easier to think about it, write about it and laugh about the crazy moments along the way.

JD’s surgery was at a hospital in New York City a couple of blocks away from where we used to live, but since we no longer live there, we decided to stay in a hotel the night before.  We booked a room at what I later found out was called a "boutique hotel".  From the moment we checked in to 2 weeks later when we had a family toast (juice boxes and champagne) while JD threw his meds in the garbage, we had our fair share of ridiculousness…it is afterall, what we do best.

JD throwing away his meds!

First off…the “boutique hotel”:  Tony must have said this phrase 20 times while we were there.  Granted, the man is clearly more traveled then I, as he travels all over the world for work.  But, every time I remarked on something I thought a bit odd, he had to say, “well of course Sue…it’s a boutique hotel”.  (I could have made a drinking game out of it.  “It’s a boutique hotel”  “DRINK!”)  So, according to Tony, that is the reason why 

a) we rode in a black alligator-skin elevator to get to our room (yes, alligator-skin walls)

b) there was an ill-cut zebra print carpet everywhere that didn’t quite cover the slanted and bumpy floor
c) we needed to use our key card to turn on the electricity in the room 

d) there was no shower curtain or shower door (hence a soaking wet floor post showering) and 

e) there was a maintenance man in our room 3 times during the night to turn on (then off, then on again) the heat because we could not do it ourselves.  Apparently it required a maintenance man and tools.  Tools.  It wasn’t broken (so they said), it just required the use of tools to turn it on and off.  What??  

oh, and
f) There was a giant white pleather headboard with large metal studs that went all the way up to the ceiling (and I’m so angry with myself for not taking more pictures!). 

  I do have at least one picture that captures the disorienting carpet:  (and the cutie in the mirror)  This dizzy carpet runs through the entire hotel.  Rooms, hallways, lobby....everywhere...

So, we slept in our boutique hotel, showered (while soaking the entire bathroom floor), then started walking to the hospital a few blocks away.  It was raining (of course), and at one point Tony actually turned to me and asked, “you didn’t put any make-up on?”.  He wasn't really implying that I should be wearing make-up, he could care less -- but rather he was surprised that I was walking around the city without any, so I mention this asinine question of little relevance only because it falls squarely into the category of “ridiculous”.  I'm not a person that wears make-up everyday, and if I did put any on, I certainly would have cried it right the hell off in the hours to come, so Tony’s question was nonsense on many levels.  But of course, he was as nervous and delirious as I was, and quite possibly dizzy from the busy zebra carpet and the maintenance man's cologne.

The day of JD’s surgery is fuzzy, as were most of the days we spent in the hospital.  We got him checked in, we cried, we prayed, and then they let me put on an awesome body suit and carry him into the OR.

Once JD woke up from surgery, we spent a few hours in the post-op ICU, where a very puffy little nugget slept on top of me while we took turns giving him oxygen.  He was connected to 4 different wires (heart rate monitor, catheter, IV in the hand, Epidural in the spine) and had an incision across his entire abdomen, so picking him up was a tangled balancing act that Tony and I bickered about each and every time we did it, much to the annoyance of those around us, I’m sure.  After a few hours there, we were moved to the pediatric wing of the hospital, which was our home for the rest of the week.  We were in one large room that had 4 beds and a nurses’ station.  The highlight of sharing this room with three other patients was listening to the little girl across from us watching videos of "Uncle Moishy" on her parents laptop.  I became obsessed.

Tony and I slept on a big chair across from JD’s crib/cage (that’s what we called it because it was a big metal contraption that unfortunately looked like a cage).  I left our 8 foot square area as little as possible,  to go to the bathroom, and once to a vending machine. That’s it.    Unfortunately it was during one of my trips to the bathroom that the lovely people from “Soaring Words” came to give all the kids a beautiful gift of a decorated quilt and pillow.  Look them up, it’s a wonderful organization, and the gifts they gave to JD were very special.
http://www.soaringwords.org/

Anyway, while I'm in the bathroom, JD starts screaming so Tony tries to pick him up and calm him down.  In doing so, he somehow unhooks the clip from JD's catheter bag, which spills all over JD, all over Tony, all over the floor….  just as the “Soaring Words” people come around the corner, full of smiles.... “We have a special gift for JD!!!!!”, to which Tony, soaking wet looks up and says, “Can you get a nurse!?!” –

But, once everyone and everything was cleaned up... he did enjoy the nice gift ;)  Thank you, Soaring Words

It's funny when you're in these life moments, the details you remember and the ones you leave behind.  Try as I might, I cannot get the image out of my head of carrying JD into the OR, and worst of all, having to leave him there.  That was without any doubt one of the most difficult moments I’ve ever had and a visual that won’t ever leave my memory, though it is easier to reflect on from here, blissfully on the other end of this experience.  But there are good things too... I can very clearly hear the Uncle Moishy songs playing in the background the first time JD sat up and tried to eat something, I can remember the exact look on his face when Lily came to visit him with a toy from Build a Bear and how he sat up and smiled when someone came to the room to play Disney songs on the keyboard, I can remember the way Tony cried when I left to take JD to the OR, and the way he looked when we sat down to talk to the surgeon after it was all over, his body sinking into a chair and relaxing for the first time that day.  I can remember the nurse laughing at Tony after the catheter mishap and calling it a "typical dad moment", and I remember the way JD never let go of his Mickey Mouse, even when he was fast asleep.

So, of course a lot of silly images float up to the surface of my memories of that week, but I guess that's how we deal with things, maybe that's just a way to process the more difficult moments.   I can't put into words how lucky I feel that my kids are healthy and that JD did so well in surgery and in recovery, and in between the overwhelming gratitude I feel, I can't help but laugh at some of the nonsense along the way.  Sometimes being able to joke about a nauseating carpet or a "typical dad moment" helps keep us a little sane and a little grounded.  I joke about the nonsense that follows me around in life, but at the end of the day, I'm so so very thankful for it.