Sunday, August 26, 2012

Plans....not quite

Friday morning we headed into the hospital for an echocardiogram and an EKG. Sam was not a happy camper, since he was no-food-no-water-no-nothing since the night before. He did pretty well through the whole thing. I do wish the people in the heart clinic had been a little more empathetic to his situation. They didn't quite seem to get it.

Then we headed over to "our" clinic for the rest of the day's activities.

Last time Sam had a bone marrow biopsy and lumbar puncture, he woke up badly from the anesthesia and had, two days later, a terrible spinal headache. The staff told me to make sure to remind them of these things when we arrived, and so I did.

So we gave Sam a large bag of fluids before the procedure, morphine before they woke him up, and a cup of Coke (caffeine helps, they said) with his post-procedure meal (French toast sticks, if you were wondering.)

It all went really smoothly. Sam was a trooper. He woke up well, ate, was in good spirits. He complained of some back stiffness, but came home well.

Then his pain and headache started, along with some vomiting. We've been monitoring it, we've been giving him pain meds and anti-nausea meds. I just feel so horrible that he is miserable. I'm sure if we were inpatient, they would be able to give him even more and probably help alleviate all of his symptoms. (I spent a lot of time on the phone with our phenomenal nurses at CHW)

But tonight, he was laying on the couch, after a whole day of pain and discomfort, and watching David act silly. And he was laughing.

Out loud.

And I realized that home might a pretty good dose of healing medicine.


My poor baby.

But late Saturday, all that healing laughter wasn't quite enough and we headed over to the Highland Park Hospital for some fluids and IV meds. It was a little weird being in the same ER room in which we started back in June. But they sent us home and all was somewhat well. Sam slept through the night.

When he woke up in the morning vomiting from the pain we called CHW again and they asked us to come here...and here we are. We spent most of the day in the ER after a really rough ride up here (poor baby) and the staff let Sam call some of the shots. He really wanted to go home so we stayed in the ER probably longer than we needed before finally bring admitted. Will we stay now through the chemo start? Not clear. We shall wait and see.

Upside? The nurses totally knew how much we loved our east-facing room and made sure we got another one. Now that's love.

While we are so bummed to be here, it is comforting to know that pain and nausea meds come by IV here. Whew. We didn't bring all of our stuff but it's ready to go at home...maybe a day pass will spring us for a tiny bit before chemo starts...or who knows. Until then, we hunker down and wait for the pain and nausea (most likely from the spinal tap but also could be from the spinal chemo) to pass....

(and I don't have my laptop so blogging will be a little weird.)

More tomorrow when we know more. For now...all is calm.


  1. Let me know if you need your stuff, I'd be happy to bring it up to you.

  2. I was checking all weekend for updates...our prayers are with you and the family. Get well soon Superman are the man! Love, Breana

  3. Finding the familiar, even with pain, helps, I'd think, and Sam is in a place knowing the people there love him and will help him through. You too. Bumpy ride, glad for a little calm, and of course, as you will, keep us all posted. You know we think about you every day.

  4. Hi Superman Sam,

    Sorry you've hit a bump in the road. Hope you feel better soon.

    Sending you lots of xoxo from New York City,

    ~ Jane.

  5. I have some time tomorrow....what can I bring you or Sam?

    --- Nancy

  6. Stupid spinal tap!! Texas hopes you're feeling better soon, sweet Sam! Ask mom or dad for a Sonic cherry limeade with extra lime- they always make my aches feel better!


  7. Our prayers have been continuous -- but know we are holding Sam in our hearts especially tonight and praying for a good night and many good days and nights to follow. Is there a prayer for sh'lom rosh u-sh'lom beten? There is now!

    Stephanie, Aaron & Eli

  8. Thinking of you all and sending so many blessings -- for happier tummies and more time for laughing out loud about things that are silly!

    Jordi, Seth, and Gersh

  9. Feel better, Superman Sam! I was happy to get the update but sorry you felt phooey from the procedure. By the time you get this you'll be feeling great.
    Franny Bananny
    Fran Kapp

  10. Sending bucketloads of peaceful, healing thoughts to Sam and to all of you.


  11. Following along and praying for my Superman Sam!



  12. Hugs and good healing superhero thoughts!!!

  13. You family is in my thoughts and prayers!