Saturday, June 16, 2012

Shabbat in the Hospital

Shabbat in the hospital doesn't feel like....Shabbat.

There are still people coming in and out with medicines and tests. There is still a flurry of things to be done. Nevertheless, we wanted Shabbat.

There was challah, brought from home. The batch was split into two, one challah in Milwaukee, one at home. Sam's favorite turtle held the challah for us.
 There was a Shabbat blessing, even though Sam was feeling a little under the weather and didn't eat any Shabbat dinner. (He did have a bite of challah)
 There were candles. Well, sort of. The chaplain visited us earlier in the week. When he learned that we are Jewish, he immediately offered "candles" and brought them back to us on Friday morning! (I suppose I shouldn't tell him about the Chanukah candles that we actually lit in the hospital when Solly was born. I knew that was a rule-breaking moment!)
But it was a rough night. There were a few fights with the nurse over the simple vital signs that she needed to test for. Every four hours, they come in and check blood pressure, temperature, and a few other things. Plus there was 3am chemo treatment, administered through Sam's central line. There's quite a bit of activity during the night in the hospital. Sam was feeling a lot queasy and he wasn't interested in eating...which continued into Shabbat morning.

But then a few special visitors came, and that brightened the whole day for him:
Ready to roll
Sam with his superhero team
 Sam showed them around the HOT unit (Hematology/Oncology/Transplant), and gave them the grand tour.
A Shabbat walk
 He also showed them some of the hospital stuff, like his central line, and he listened to their hearts.
They also got to eat some of his candy...and so did he.

 He was so happy to have them here. It's amazing how much time my kids spend with each other, and Sam and Yael have barely ever spent more than a day or two apart. I hadn't given that much thought until now. Solly was a little tricky. He wanted to touch and taste everything, which doesn't much work in a hospital. We're going to plan a visit for this week that is only for David and Yael...we'll leave the little guy at home.
Then we took the other kids out. We had planned to do the zoo but it rained, so we hit the Milwaukee Public Museum. It was nice, but hard. Sam is the biggest fan of the museum (he loves the rainforest section) and I think we could all feel his absence.

 After we got back from our little outing, I was Sam had a little quiet chatting time with Uncle Josh. And he ate a McDonald's fish sandwich and french fries. It was the first real food he had eaten all day.
Sam has not been very interested in walking around. He is a little nervous and frustrated with the IV pole to which he is attached. I think there's a little embarrassment also. Finally, we convinced him to go for a walk and see the fish tank in the lobby. We spent a lot of time there, talking fish with Uncle Josh and just enjoying the big tank.
Then, after Uncle Josh left, we explored the Healing Garden, which is a quiet outdoor space. Sam walked around it a few times and we decided to come back again tomorrow. It was so lovely to get some fresh air and to see him enjoying the outdoors. His nurses were so proud of his adventure!

It's getting a little easier for Sam to deal with all the challenges that are presented to him. He hates to take meds by mouth, and so we're finding new ways to make that work. He isn't so interested in eating, but we've already planned tomorrow's breakfast menu so hopefully that will help out with eating. The doctors are trying to avoid a feeding tube, but sometimes that is inevitable, we're told. Sigh...many pieces of this seem unavoidable. We have a lot of trust and faith in the work of the doctors and nurses...

We had some lovely visits from rabbi-types and other friends before and during Shabbat, so many wonderful notes and coloring books and gifts...Sam is starting to feel the love, and we are so very grateful. Thank you to everyone! I know I can't thank you all personally, so please know that we are so very grateful for everything you are all doing, for Sam and for our whole family. We truly felt all the prayers for healing that were said all over the world on this Shabbat.

May this pleasant Shabbat ("a good day," as his nurse called it) be a harbinger of the whole week ahead!


  1. Sounds like a Shabbat you made with what you had, and that's just fine. When my little guy had to learn to take meds by mouth we practiced with the mini-M&M's - and when he mastered it, he got the rest of the chocolate. Maybe Sam could try that?

    Thought of you all day today - I loved seeing the pics of the kids together. Big smiles all around. Lucky siblings, to have each other. Shavua Tov - in all possible ways.

  2. If mini-M&Ms are too big, you could try starting with chocolate sprinkles and moving to the M&Ms. That's how we taught Sara to take her epilepsy meds.

  3. Sam -

    I told everyone last night at the Relay for Life about your story. Everyone is thinking of you and praying for you. Try and take everything minute by minute, day by day, week by week. Win a battle every day and try not to get caught up in the small failures or discomforts. Lots of love to you from the Egel Nest!

    Bradley Egel

  4. Keeping you in our thoughts and prayers every minute. Much love to you!!

    Linda and Bruce

    It's supposed to say Bradley's Mom.not sure why it is glitching like that!

  5. Just found out the news this morning. I'm so sorry to hear you're going through this and so impressed with the grace and faith with which you are handling it. We'll keeping davening for Sam, and I'm giving his name to our kids to take into their schools tomorrow. Hoping to hear only good news, soon.


  6. I loved seeing the pictures of the kids. This is the first time I have ever read a blog and I will do it every day now. I pray that this week is a good one for all of you.
    I am going to see Gillian today and will ask her what are her favorite books and toys so that I know what to send to Sam this week. I hope it won't be something for girls.
    Gillian said i should be sure to say hello to Sam.

  7. Dear SuperSam,

    Wow -- what a great Shabbat you had. I'm so glad that the rest of your supersibs were able to join you for a special super meeting.


  8. I have been praying for SuperSam from the moment I heard about this. It was my son's bar mitzvah this weekend, and I got all choked up thinking about your guy in the hospital. Yours is the first blog I'm checking.

    To see how things are.

    To see how you are.

    Are you taking care of yourself, mommy?