Tuesday, June 26, 2012

A Grumpy Start, the magical nurses and Team Jerseys

After quite a restful night Sam woke up a little before seven. He had the grumpy "I'm hungry" look on his face, but he wasn't in the mood for food yet, and that was good because room service wasn't open until seven. At seven I ordered him a yogurt smoothie (which he has taken a real shine to) and tried to get him into a good mood. His favorite nemesis, I mean nurse, LA showed up with her trusty side kick, I mean wonderful intern R. The battle ensued. They brought their best arsenal of smiles, jokes, threatened tickles. Sam did his best to frown, hide his laughter and duck his head under his blanket to avoid morning vitals. Vitals accomplished, the dynamic duo fled our chicken coop. They left behind a struggling-to-frown child trying to hide that he just saw two friends he refuses to admit he loves in his own six-year-old way. Sam devoured his yogurt smoothie, a smile on his face, watched a little morning Fairly Odd Parents and proceeded to eat an entire bag of popcorn from the night before.

   The art of being an incredible pediatric nurse, doctor, caregiver, or anyone else working at a children's  hospital is a skill to be prized above all others. It takes a chosen few who dedicate their lives to caring for our most prized possession, working with parents at their wits ends and children fearful of all they don't understand. They do their best to minimize the pain and humanize an experience that is an alien world to all who enter it. They all have my undying gratitude and love.

   Apparently you can't have be a super hero without a theme song or have a team without uniforms. Sam had two incredible visitors today. My incredible friend and colleague, Rabbi Andrea Cosnowsky, stopped by just to sing a few songs for Sam and tell him about his personal theme song she is writing for him. Sam was so inspired by the songs he took a walk with us downstairs to see his friend Jacob, Rabbi Andrea's oldest son.
Rabbi Andrea working on my Super Hero Theme Song!

After lunch Rabbi Steven Lowenstein showed up to show the work he'd done on Sam's team attire. If there's anything we all know about Rabbi Steve it is that he LOVES designing team jerseys.
Team Sam Hats and T-shirts!
And we all know that every Super Hero needs a disguise to hide their secret identity.
Rabbi Steve Thinks of Everything!
   Completely outfitted and disguised Sam proceeded to enjoy most of the rest of his day and an entire fresh peach. After his bath, which was uneventful, it turned out that his aquaguard (waterproof cover for central line) was stuck right to his central line dressing (ARG!@#@%$@!!!). Our nurses, LA and R, were busy. I watched on eggshells as my Sam assisted the charge nurse with removing all the sticky dressings of his central line while trying to wear gloves that didn't fit and a mask that kept slipping. I wanted to crawl out of my existence with concern and frustration. I had asked for help applying the aquaguard and we had adhered it too low.

Sam was frustrated by his slipping mask, but amazing as he slowly removed all the adhesive protecting his central line. He then gritted his teeth as our charge nurse cleansed and prepped the area and applied the new adhesive guards and protective shield.

   This half hour threw Sam back into his grumpy "I hate this place" mood. He slowly crawled into his reclining chair and asked for me to unpause the movie he was watching (Big Miracle). I handed him his water and a new bag of popcorn. Slowly the food worked its way into his system and his anger subsided just before Uncle Josh made his appearance for the night. Sam's mood returned to the rest of the day's good feeling as the jokes and ribbing shot back and forth between he and his uncle.

I left my two stooges with good humor, good laughs and a sigh as I regretted having to drive home and miss all the fun.

   Once again I extend my infinite love and gratitude to everyone who has sent a card, a picture and some amazing gifts. We appreciate all your love and support. I know you all understand it is nearly impossible to thank you all with individual thank you notes, but please know the outpouring of love, prayers and gifts is most appreciated. If you find yourself thinking of making charitable donations we are most grateful for everything Children's Hospital Wisconsin has done for us and everything the MACC Fund does to find a cure for childhood cancer and blood disorders.

   May all your blessings and prayers be reflected upon you one hundred fold. May all our unconditional love overflow to help heal all those in need in our lives and continue to make the world a better place. Sam's illness is proof that changing the world for good begins with one small person, even one small ill cell that has encouraged tens of thousands of people to pray as one (while dressing in Super Hero costumes at the same time! How cool is that?!).


  1. Love your words. and I want to know where I can get one of those Superhero Sam T-shirts from Rabbi Steve.

  2. Checking in with my morning coffee from Modi'in, Israel. You've got an amazing superhero, and an amazing team. Hope you're all sleeping well on the other side of the world and awaken to another good day.

  3. I come here every day, and every day I click on the comments button... but I'm often at a loss for words. I hope Sam understands what a brave young man he is. It's okay to be grumpy, but the fact that he has nice, happy, friendly moments shows what a wonderful kid he is. <3