Hospital Missive

I’ve been sitting here in the hospital room listening to the DING DING DING DING of Jack’s vitals monitor. Apparently the kid has a low heart rate while sleeping – it’s been hanging out in the 50s tonight and the machine is not happy at all.

Today was hard. Jack’s energy has been completely zapped and he has seemed to be in a daze. He wouldn’t even answer yes or no questions. When he passed out from the Benadryl administered prior to a blood transfusion, tears broke through. This is all very sad – my little boy of 5 years has a terrible illness and is getting pumped full of toxic chemicals – A SHITTON of them. How did this happen?? It’s all very horrifying.

Part of the way through this blog entry, the machine started freaking out and flashing EXTREME BRADY while making a higher pitched DING. The Pediatrics resident came to check Jack out – his heart rate was dropping down to the 40s – and apparently it’s fine because his O2 level is good. Every three minutes for the past hour or so, I’ve been hitting “pause alarms” so that the machine shuts up about the damned EXTREME BRADY. When I get super worried I sniff in his ear to irritate him and wake him up – his heart rate goes up a bit then.

It doesn’t look like I’ll be getting much sleep tonight. I tend to be hypervigilant due to my PTSD and these alarms are not helping at all.

As much as I want him to get out of this hospital room, I’m also nervous about taking Jack home. Having medical staff right out the door is pretty convenient (at least when you need them). I can already imagine the number of times I’m sitting at home debating whether to take him to the ER or not.

Thank goodness for friends and family. Thank goodness for an amicable relationship with my ex. Thank goodness I have a strong marriage with David. I know these things are going to get us through the next three years, even if right now things are rough.

Thank goodness most of all for Jack’s strength and bright spirit. I’m going to help him kick Leukemia’s ass.

10 thoughts on “Hospital Missive”

  1. I’m so glad you all have a great relationship. Something like this is likely going to bring y’all together even more. I can already see how well you’re working as a team. Jack’s so freaking lucky to have 4 parents who love him so very much.

    I hope you get home today, but not before Jack’s package gets there 🙂 Or before you’re totally comfortable with it. There is such comfort in knowing that there’s somebody right outside to help you.

    I love you bunches and can’t wait to hear from you today. Henry’s already plotting what joke to video for Jack tonight 🙂

  2. it has to be exhausting and hard. i have a five year old boy, too, and am watching from the sidelines here, sending you all lots of love. rest and strength, for you. strength and healing, for Jack.

  3. You guys are in my thoughts constantly.
    Your tweet about what David said about the shock of when things will get better made me laugh out loud.
    more hugs sent your way…

  4. Hugs and love to you all. You are going to make it through this and Jack will kick leukemia’s ass!

    I’m saying prayers for all of you as you walk this path.

  5. Oh my god. I’m so, so sorry to hear this. (I used to be a regular reader; I blogged at ilpiccolino.) So many good thoughts to you, Jack, his dad, his stepdad.

    C., are you still in the Bay Area? If so, I’m in Berkeley and if there is ANYTHING I can do to help you, please let me know.

  6. Oh Crystal. I hadn’t seen anything from you in a long time and decided to see what you’ve been up to (d_a from LJ). A million hugs to all of you. I know that Jack will kick leukemia’s ass!

  7. I hate to say this, but welcome to the MY KID HAS CANCER CLUB. It’s the shittiest club ever, it’s scary and not fun, and you will hate every minute of it. I’m so sorry you have to go through this, reading this post brought back so many memories of our hospital stays. Have you changed his diet or check his PH levels? Good luck we will keep you in our thoughts and prayers.

    1. Thanks for stopping by and leaving me a message. I know – it IS shitty club to be in! I am super sad that we are both in it. When I went to your page and saw your little guy I got hit again with the whole “WTF! Kids with cancer?! Such bullshit!” Just, UGH.

      No (purposeful) diet changes here yet. So far I’ve been told to give Jack what he wants pretty much because extra weight is good prior to Delayed Intensification. Is Ph the uric acid? I think they check them periodically at the clinic (they didn’t check this week, but may have been his dad took him in – we take turns and I can’t keep it all straight). I did finally get some nutrition info from the American Cancer Society today so I need to look that over.

      Good luck to you guys, too! May the cancer be completely decimated, never to return!

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