What a Week

I went to bed Tuesday feeling not great, but Wednesday morning I was sick.  Of course my sick was nothing compared to Moira’s sick – she’d been sick all over her bed.  So, while Jim got her in the shower, I did lots of laundry, empty her sick bowl several times and finally got a nap.  This was not the most difficult day of my week.

On Sunday, someone who told me he would do something for me backed out, no reason, no apology, just no.  This was after a commitment and for something I was relying on and one week before the deadline.  This was not the most difficult day of my week.

Saturday, while paying for his Christmas gift to Moira at Barnes & Noble  Liam tells me, “Mommy, my heart is beating really fast.”  It shouldn’t have been. This was technically last week, so it was the most difficult day of my week.

No the most difficult day of my week was Monday when I called to report Liam’s “incident” to his cardiologist and got the call back.  Liam’s having tachycardia to go with his bradycardia.  Tachy – really fast, brady – really slow. . . and his doctor was waiting for this to happen.  It’s the fourth horseman of the dawn of the pacemaker and what they gave him 16 Holter monitors in two years to find.  Liam found it all by himself in line at Barnes & Noble, and again in Music Class on Wed.

So, now we have to call the cardiologist again in ten days, tell him how often this has happened, wait for my new insurance card to show up and see the doctor in January.  Maybe Liam will get a little hand held event monitor to catch his tachycardia episodes, maybe he’ll gets some nasty toxic heart medicine that we’ve been trying to avoid but no longer can, or maybe we’ll pull him out of school and send him to the hospital to have his sixth open-heart surgery.  Oh, yeah . . . unlike 90% of the pacemaker population Liam’ has to get his through the chest.  So, no overnight recovery for my third grader. . . nope it’s a big one. Doctor says, “It’s pretty much certain” that Liam’s chest will be cracked.  Only problem there – besides the terrible pain for my eight-year-old – is all that scar tissues from the five other times this has happened to him and the risk of infection which after it almost killed him five years ago we take very, very seriously.  Plus I’m afraid Liam is going to hate me for putting him through this.

I’ve not been sleeping well.  I’m cancelling my book release party today until further notice, since Liam may be in the hospital or recovering, or what I don’t know.  Until I know it seems foolish to make plans.  Ironically, or not, the book talks about how we can’t really make plans because Liam’s medical condition precludes all planning.  I guess I forgot that lesson over the last three years since he had his last heart surgery.  So on this prelude to Christmas, my mind is revisiting six open hearts, six cath interventions, one wire-ectomy (no longer valid) new wires coming, and partridge in a pair tree. Sorry, I’m usually supper chipper and positive, and I will be again, that’s my nature, but I’ve been holding this in all week and it’s gotta come out.

10 Comments »

  1. Oh Amanda, I am so sorry to hear that Liam is having troubles. It makes me sad to hear this. I hope they can find an easier way for him than another surgery. That just sucks. Thinking of you guys!! Hugs from PA!

    Stephanie, Noah and Caroline

  2. I think that you are so right that we can’t make too many plans… My heart goes out to you and your family. All of us heart parents know how hard this can all be. I am not sure how you have managed to stay as sane as you are. You are defently my role modle. Good luck and if I can help in some way please let me know. I am only three hours away.

  3. Being a heart parent excludes you from planning things! My son is also waiting for another procedure and although I arrange things for us to do it’s always on the proviso that we might be in hospital!

    I’m hoping for the best outcome for Liam. As for diagnosing himself, well we do say the patient is the expert in their condition where I work! 🙂

    Best wishes to you all and I hope you celebrate your book launch in a smaller way, you deserve to. 🙂

  4. So sorry to read about your week, Amanda. I know that lull we can get into when life seems “normal” and then whammy. I think it is one of the hardest things to come to terms with. Or is it harder having to explain surgery to a 3rd grader? Hmm? It all pretty much sucks, huh? I remember people telling me when Alex had his first surgery that it was harder on me…he would never remember. And I would always think, but what about when the day comes when he WILL remember and know and be able to talk about the surgery/cath lab/etc? It is a whole other ball game as they get older. Thanks for your honesty and willingness to share. You are not alone.

  5. Amanda– I’m sending good thoughts your way– sounds like a tough time for you. The book release party can wait, of course, but when it happens, I’ll plan on being there. I’m so eager to read the book– the cover is beautiful. Love and positive energy to you, Liam, and your family.

  6. I’m so sorry to hear the news Amanda. Things like this always make me cry. I feel your pain through your words and I cry for you and your family. My thoughts and prayers are with you and Liam. Our children are miracles and will continue to amaze us with their ability to handle anything thrown their way. If they can handle this, then so can we. I tell myself that everyday.
    Heart hugs,
    Suzanne

  7. Hello Amanda,
    I just recently have found your blog. Thank you for sharing your experience. As a mom of a “heart warrior” who is now a young adult, The tears welled and I felt the familiar panic, when reading your “Mommy my heart is beating fast”
    I still am getting those phone calls (he is now 24) And I don’t care how much time has passed, I still feel the dread that stops me in my tracks.
    Then I remember the drill… Pray, be in the moment, do what needs to be done. Reach deeper inside and hold the knowing that the reason I panic is because I love my son so much!
    My son did get a pacemaker inside of his chest at the age of 4. To help his bradychardia that was being caused by the meds to stop his tachycardia. He is now 24.
    So as a veteran, I am offering you my ear, my arms (for a hug), my love and just a whole lot of grace!! The procedures you name are familiar to me and my son. The hundreds (it seems) of holter monitors too. Funny, out of all that he went through it was always those holter monitors he hated- oh and the blood draws!
    I know the healing power of a shared experience. I offer you and everyone who may read this, the healing power of shared experience in having a child with a heart issue. I am forever grateful for the experience, for it has brought me to know life at a much deeper more profound level. Also I am forever changed for this experience, for it has brought me to my knees in fear. But I get up every time and figure out a way to get us through it.
    Living in the moment is something we hear often and a pharase I often say to remind myself as well as clients of the power of the moment. So perhaps this “not being able to plan” is simply forcing us to live in the moment.
    It is all we have.
    Love and hugs
    Mary

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