Hospital - your home away from home

When I decided to document various experiences throughout Ty's two-year journey in honor of pediatric cancer awareness month, I intended to include a post about what life is like for a parent "living" behind hospital doors.  Since we have been inpatient in the hospital for a couple of days now, it seems perfectly fitting to reflect on some day-to-day experiences here, in our home away from home.

Here we are again.  In my closet I keep a huge duffel bag that we call "the hospital bag" because it always has a set of toiletries, PJs, change of clothes, etc. for Lou, Ty and I.  We have made ourselves at home, the big bag perched on the shelf and shuffled through constantly.  I recognized two moms in the halls that were here on my very first stay... they've been doing this even longer than me.  Now I'm one of those veteran moms.  There are so many new faces!  So many new kids losing their hair for the first time.  It makes me sick. 

When we checked into Cohen's Children's Hospital, Lou and I met our first family walking in the same shoes.  I was so heartbroken every time I saw their little bald-headed beauty because he was weak and he was tiny, and Ty was going to experience the exact same thing in the near future.  That was when I learned the bizarre feeling of longing for a relationship with another cancer mom, yet instinctually keeping a distance due to the sheer fact that I barely have the capacity to be strong for Ty... how could I possibly be a supportive friend to someone going through the same thing.  I have since learned that I probably can, but I have yet to really do so.  Today, I feel a lot of the newer cancer moms watching me in the same fashion.  Knowing we have been through the ringer already and too afraid to ask any questions because they don't even want to know how bad it might get for them. 

In the hospital I smile a polite smile and look down when I pass the other parents.  I take note of all their faces, I find out the kids names by listening or looking at their charts and I google them to learn more about their stories.  But I don't introduce myself or ask questions.  Is that weird?  There are some children in particular who have left holes in my heart because they lost their battles - even when I thought they were so much stronger than Ty and I envied them for their ability to gleefully walk around the playroom.  The one I just mentioned, his precious face is forever in my memory, and another little boy we shared a room with who reminded me so much of Ty.  They have been robbed of the beautiful lives they deserved and I think about them every single day.  I believe those two boys are what keeps me from making many friends among momcologists.  Because I fall in love with all of these children, just by watching them, and I don't know how much my heart can break before it just crumbles into pieces. 

Tonight a mom stopped me in the hall.  She seemed so nervous when she asked if I was a mom, too.  I allowed myself to engage in a conversation and learned that her 20-year old son was recently diagnosed with leukemia and this is his first hospital stay.  She told me how he cried and cried, "why me? why did this happen to me?" until she took him here and pointed out "why any of these kids? none of you did anything to deserve this."  She seemed utterly confused when I explained that we were here for surgery, Ty's 20th in the course of two years.  Why would he ever need more than one surgery?  What kind of cancer does he have?  Brain tumor.  That confused her even more because she didn't think kids get brain tumors.  Next she asked me how long the doctors said it would be until he was cured, because two years seems like such a long time.  I was so tempted to share with her the marathon quote that I learned from the NYU surgeon, but I didn't.  I wanted to shake her by the shoulders and explain that this will never go away, but I politely refrained.  It was her first day living in the hospital.  I was just like her once and I didn't need to scare her about what lies ahead.  I just said a prayer asking that she be a lucky one.  That her son does well and is cancer-free very soon. 

Living in the hospital pretty much sucks. We have spent more than 200 nights over the past two years (167 the first year alone) with beeping poles, crying roommates, crying Ty, vital signs checked every two hours at night and neuro checks every four (where they wake him to shine a light in his eyes).  It is dark here.  It is depressing.  The air is very dry and Lou and I always end up with sores in our noses/throats.  We eat terribly unhealthy when we are here.  We lose our tempers because we are so riddled with anxiety.  We look ten years older.  Two bathrooms and one shower are shared by 30 rooms of parents.  Day after day we rarely get outside.  A trip to Duane Reade is truly a delight, and I mean that (ever since they remodeled the Manhattan drug store chain, I could browse the aisles for an hour!).  On the plus side, we look forward to our favorite sushi dinners, and this photo depicts a typical night of entertaining when friends come by for a visit :)  There is also some down time for reading and thumbing through magazines because there are no dishes to do, no toys to clean up.  That can actually be nice.

The sink in our hospital room, filled with beer and ice

Oh No!  I have to pee!
I posted this over a year ago, but nothing has changed.  It still perfectly depicts what it is like:
I just thought I would share this with you, because it should be such a simple thing... wanting to brush my teeth before I go to bed... or wanting to wash up with a proper skin regimen and moisturize my face before bed... yet it is the complete opposite of simple when we are here and I'm alone with Ty. If Ty is awake, I have to prepare him for the fact that I am leaving him alone in the room for a few minutes. He is never happy about it. I have to put on a movie, bribe him, etc. Then, as soon as I set foot outside the door, the panic begins... what if he throws up? He throws up ALL THE TIME, what if I'm not there?? When I sneak out while he's sleeping it's even worse because I worry he'll wake up nauseous or in pain and have no idea where I am. My trips to the bathroom are comical. I rush everything. I actually floss in the room before I head down to the bathroom to save time, and I leave prepared in such a way that I can go through my bedtime routine as fast as possible (pajamas, brush, splash water on my face, pee, run back to the room).

The sleeping situation can be rough.  During the long stays it really takes a toll, but a short visit like this one is fine.  If Lou is with me (which is usually the case) one of us sleeps on the pull out chair/bed that might as well be a slab of concrete.  The other is in bed with Ty, crammed up against the railing, afraid to move because of all his tubies and wires. 

We will be discharged today.  Every time we leave I pray that this is our last stay inpatient, but today I won't.  I'll try something new and accept the fact that we will be here again.  After all, it's our home away from home. Maybe then, we won't :)

How is Ty?

This picture says it all.  This is the reality of how he's feeling.  But, you all know why we call him SuperTy.  He is simply one tough kid.  The surgery became more complicated than we had hoped, but he recovered well enough that we can go home today.  The incision site from his surgery in July wasn't healing.  The stitches left a hole that kept getting wider instead of closing up, and surgery was required in order to avoid the hardware from becoming exposed.  When the surgeon re-opened the incision, he said the shunt valve had likely been exposed which is very dangerous (mostly because it could breed infection).  He replaced the valve and created a tunnel under the scalp where the skin was much thicker.  Then he made an incision just under Ty's shoulder and used that to snake the new valve down into the new spot.  He spliced and replaced some of the tubing that runs from the valve into his abdomen and had the plastic surgery team close him up.  So, Ty is pretty beat up.  But he's drinking lots of apple juice, playing Chutes and Ladders and smiling a lot, too.  He even got to join in on Bingo night the other night, which is always a treat for Ty. All-in-all, this was a pleasant stay at the hospital if there is such a thing.