Community

Waiting for surgery. Chris and I made up a song about
the "Koala Rockets" on her itty bitty hospital gown.

I'm becoming an expert on being in the hospital, sleeping on a stiff foam couch, and listening to beeps all night long.  Sunday afternoon Hannah came home from the hospital after her surgery, and if you are counting, this is her fifth time coming home from the hospital.

We arrived to check in around 3:30 on Friday afternoon and waited in pre-op until almost 6:30 when she finally went into surgery.  It only took about 2 hours.  When I was reunited with her after the PACU (post-anesthesia care unit) around 9pm, she was alert but rather unimpressed with the situation, refusing to give me any smiles or even make eye contact.  Then the nurses bugged her as they got her situated for the night, messing with her IV port, putting on her mini hospital gown, taking her vitals, and administering meds.  Once I was able to swaddle and hold her, she finally felt safe and comfortable enough to sleep.  By Saturday morning she was much happier and smiling again.  She got a little grumpy when her tylenol would wear off.  She loved having a mobile on her crib to look at, and she was wiggly and (mostly) back to her normal happy self by Sunday.  Her surgery went as planned and her wound is healing just fine. Yay for no fever!  Yay for a healthy surgery site!

A little shell shocked after surgery

I was very excited and relieved that Hannah could finally get the myotomy.  I was hopeful that maybe the end to these feeding issues would be in sight and we might find some kind of normal soon.  But I also spent the last week and a half worrying. Worrying that she would get sick before surgery day.  Worrying that I had the right surgeon.  Worrying that he was using the right surgical technique.  Worrying that I had chosen the right hospital.  Worrying that the surgery wouldn't work or would have complications. 

Utah Valley Hospital is 2 miles from our home.  Hannah and I had 2 stints there, and with just one pediatric ward, we got to know the nurses, technicians, and physicians very well.  There are half a dozen attending physicians that alternate shifts, and I was always present for daily rounds and could ask as many questions as I liked.  I felt like they knew me.  Nursing mothers can order a meal tray three times a day, and it is included in the room rate.  The nurses are always asking what they can do for the parent, and they bring drinks, snacks, fill your water bottle, set up the pull-out bed, and help you feel very comfortable.  We went to an outpatient clinic there in January, and the nurses remembered us by name and were happy to hear of Hannah's progress.  Each patient room has a private bathroom and shower for the parent, and I was able to wheel a hospital breast pump into the room with me so that I literally didn't ever have to leave.  As our first hospital crisis experience, it was somewhat of a defining experience for me.  It became a familiar place with friendly, recognizable faces, and was very comfortable.  So part of me was a little disappointed not to go back there for Hannah's surgery.

Safe and sound in mommy's arms

Primary Children's Hospital in Salt Lake City bears the motto "The Child First and Always" and I have learned that this is most certainly true.  They have taken excellent care of Hannah twice now.  PCH only takes children and has considerably more beds than Utah Valley, and therefore has many medical wards. It would be unlikely for Hannah and me to be in the same unit as we were in January, or to encounter any of the same nurses or physicians.  I knew that we wouldn't be familiar faces to anyone.  Most of the time, I never met the attending physician on staff. At Primary Children's the parents largely have to fend for themselves.  The nurses ask if there is anything they can do for you, but they really can't do much besides direct you to the cafeteria.  I didn't receive a single meal tray unless I was willing to pay for it myself.  The nurses never brought me food or drinks.  One time I was determined to find something the nurse could actually do for me in response to the question "Can I get you anything?" and I asked for earplugs, which she did track down for me.

Koala Rockets

Hannah's hospital room had a couch and a bathroom for me to use, but not a shower. (Ugh! First world problems!)  Because of the size of PCH, everything is streamlined.  Rather than having a hospital breast pump in our room, I went down the hall to the pumping room, where mothers can go to use the supplied pumps and then sterilize their own equipment.  Then I took the milk downstairs to the milk bank for the hospital to scan and store and prepare my child's feedings. The milk bank refrigerates or freezes the milk and fortifies it with formula if needed, and then sends the prepared milk back up to the unit in the correct administration (in our case, in a syringe for the enteral feeding pump).  Whenever Hannah's feeding pump was almost empty, the nurses were already warming up the next syringe.

Medically, both hospitals have taken excellent care of my little girl.  I know that Hannah would receive the best medical care in the world at either hospital, but that my experience would be very different.  But this hospitalization is not about my comfort or my familiarity with the nurses and doctors. This is not about me, it is about Hannah.  I made a conscious decision to go to the Children's Hospital where the most specialists are and where they are the most equipped to handle a complication.  I made a conscious decision to seek out the most experienced pediatric ENT surgeon within driving distance. And with that decision, I also had to consciously remind myself that as an expert in his field, he would use whichever surgical techniques he is the most experienced with, regardless of how big of a scar my child might have or how cutting edge another method might be.

She loved having a mobile to look at.

We had some excellent nurses that took very good care of Hannah and were lovely to talk to. We were fortunate to have Katie both nights and Johna both days which was some much appreciated continuity. While I was a little sad to lose the familiarity of Utah Valley Hospital and the friends I've made there, I came to know and love the unique sense of community that Primary Children's has.  For example, the auditorium on the 3rd floor has movie nights on Fridays for the kids, and church services on Sunday mornings (which I have now attended in blue jeans twice). Volunteers from nearby congregations come and prepare sacrament and provide musical numbers and inspiring sermons.  I often heard music coming up from the lobby from a piano or guitar or violin.  There is a school zone room and a play garden that we did not utilize, but I imagine provide wonderful opportunities for learning, exploration, play, and relief.

And the Ronald McDonald Family Room.  What an incredible place!  This room is a little haven on the third floor.  This place has bathrooms and showers and free laundry facilities.  There are computers.  There are books and games, a TV, a fireplace, and soft seating.  You can take a nap in a private bedroom, or even stay overnight with a case worker's approval.  The family room has a fully stocked, state of the art kitchen and a dining room.  If I wanted to, I could have made french toast for the entire 3rd floor using the food stocked in the fridge.  There are chimichangas and burritos and ice cream in the freezer. Eggs and milk and bread and cheese in the fridge.  The pantry has mac and cheese, canned tuna, oatmeal packets, fresh fruit, cocoa, coffee, cereal, spices, you name it.

Kaysville Church of Christ
provided dinner on St. Patrick's Day.

And my favorite part is the volunteers.  The whole place is run by volunteers, and there is a giant chalkboard on the wall that says who is providing a group meal each day of the month. It's companies, church groups, scout troops, clubs, and individual families.  I was at Primary Children's Hospital on New Year's Eve and New Year's Day.  I was there last weekend.  It could have been pretty lonely.  I was so glad that I could go down to the Ronald McDonald room and take a shower, then have a hot, delicious meal provided by happy, serving volunteers. I could meet other parents who were also experiencing a family medical crisis.  The line "What are you in for?" never felt so appropriate.  We all had in common our wearied bodies and worried minds, and could come together over our shared need for reprieve and food.  We could offer encouragement and understanding to perfect strangers that we might see again tomorrow or not at all.

The service rendered by these groups and families inspires me.  One family that served lunch on Sunday said that it was the three year anniversary of their daughter being life-flighted there for emergency medical treatment; the little girl over there twirling in the pink shirt.  Someday when Hannah's crisis is over, I want to bring my family and serve a meal there on a holiday for someone else who is having the first worst day of their life. I want to come sing a family musical number at the church service.  I want to alleviate someone else's loneliness when they are away from their family and their infant is in surgery.  I want to provide a momentary sense of normalcy for another family going through a medical crisis. If I had the opportunity to donate to a non-profit organization, this would be it.

Its been said that it takes a village to raise a child.  This place is part of our village.

Our hospital room.