Pre-Surgery Jitters

May 18, 2010 at 4:04 pm 5 comments

“We cannot change our memories, but we can change the meaning and the power they have over us.” –David Seamands

Yesterday Abby and I visited a place we are so very familiar with–Primary Children’s Medical Center.  We walked to these elevators on the south end of the hospital.  They look so bright and happy, with murals painted in them.  We got the one with the hot air balloons yesterday.  They also have elephants and fish in some of the other ones.  These elevators, regardless of how the paintings are meant to make you feel, bring on an actual physical reaction of dread and nausea for me.  It sounds silly, but it is true.  When Abby was three-days-old I remember sitting outside these elevators on little seats they have there.  I was holding her and waiting for all the test results to come back, which took hours.  I was watching her sleeping, beautiful face and trying to come to terms with the fact that something was wrong with her heart.  The elevators would open and there, jumping out at me was the brightly painted murals.  After receiving her diagnosis of Tetralogy of Fallot and realizing that her condition was very serious and would need open heart surgery if she were to live, I became lightheaded and nauseous.  As we left the hospital with her in my arms, and my stomach feeling queasy and unsteady, and me crying, I couldn’t understand how my life had changed so drastically in just three days.

That memory is so strong that my body actually recreates those physical sensations of nausea and lightheadedness when I ride in these elevators.  For ten years now and countless visits to this hospital for cardiology appointments, urology appointments, orthopedic surgeon visits, four surgeries, and hospital stays, every ride in these elevators has made me sick to my stomach and dizzy for the short ride up or down.

Yesterday, I wanted to be rid of the power of that memory.  After all, Abby has overcome some tremendous odds and she has been a little fighter, fighting through some touch and go days after her last surgery to be here with us.  Abby has fears, bur no memories to hold her captive.  We were going to the Pre-Surgery class our hospital holds for kids undergoing surgery.  The nurses and Child Life Specialists hold classes to help the children feel more prepared and less anxious.  Abby was extremely excited for the class, hoping it would help her feel less scared and more informed.

At first, I thought we had made a mistake in coming.  There were four children getting their tonsils out, two getting tubes in their ears, one getting cochlear implants, and one having his knee drained of infection in the Rapid Treatment Unit.  Abby leaned over and asked if she had to tell them why she was there.  I told her no, that the nurses knew but she didn’t have to tell anyone if she didn’t want to.  During a little video about the hospital visit Abby leaned over and said, “This video isn’t really for people having surgery like me is it?” She was right…it wasn’t.  It was definitely meant for children who were having surgeries, like tonsils removed or tubes or other surgeries where children leave the hospital the same day as the surgery.

I thought about asking her if she wanted to go when they began separating the children into a group and the parents into a group.  I could see she was somewhat apprehensive, and didn’t want to tell the other kids about her surgery.  Then, a nurse came and asked Abby to go with her.  She explained that since Abby’s surgery was different than the other kids she was going to work with Abby one-on-one.  I was so relieved, and really hoped that this class might help Abby after all.

After the classes, it was time to take a tour.  The nurse who worked with Abby called a special Child Life Specialist to take Abby and I on a special tour so we could get a better idea of how Abby’s hospital stay and surgery might be.  The Child Life Specialist was wonderful.  She showed us into the doors of the PICU/CICU, the floor where Abby will be moved to after her CICU stay, the playroom for patients and siblings, and all the waiting rooms where I would be waiting while Abby was in surgery.  Abby was so excited to see not one but TWO pianos so she could play if she felt up to it.

So, the class ended up being very beneficial.  Abby feels more prepared.  She met a couple of the Child Life Specialists and knows that one of them will be able to take her past the “see you later” lines that I can’t go past with her.  She will be able to have someone there, even though I can’t be, until she is happily asleep on the OR table and I promised her I would be there when she woke up!  Although the day was good, she still had a headache last night…I guess the pre-surgery class couldn’t take away ALL her anxiety.

As Abby was talking to the nurse and Child Life Specialist she made it very clear, and was very firm that she absolutely did NOT want Versed before her surgery.  The nurse explained that it would help her relax and forget.  Abby calmly explained, “I know.  I don’t want to forget anything.  I want to remember everything.”  I choked back some tears and felt that lump in my throat.  She is amazing and was sent here with not only a perfect broken heart, but one of the bravest I have seen.  She is aware of the power of memory and has chosen to harness that power.

If Abby can overcome her fears and face her memories….maybe it is time I do the same;  they have held power over me long enough.  Thank you amazing Abby!


Entry filed under: CHD Hospitalization, CHD stress, Congenital Heart Defect, Open Heart Surgery, Primary Children's Medical Center, Stress, tetralogy of fallot. Tags: , , , , , , , .

I Never Knew I Could Feel This Way The Others

5 Comments Add your own

  • 1. emmasmom  |  May 18, 2010 at 4:16 pm

    Sending you all our love and great big hugs!!!! you two are truly amazing!!! ❤ xo

  • 2. Amy Sabin  |  May 19, 2010 at 12:36 am


    I want you to know how much I love your blog. My daughter Annie also has TOF and as we are just beginning this journey I love to read your words and see your beautiful daughter. Please tell Abby that she gives me hope for my Annie, We are still in the CICU (bed 11) and will surely be there when Abby has her surgery- feel free to stop by. You are an amazing writer and have a gift for portraying such a vivid picture of what it is like to be a heart mom. Thank you so much. My love and prayers are with you and your family and especially Abby.

  • 3. Amanda McLeod  |  March 27, 2011 at 10:45 pm

    I read this article and tears came to my eyes. I have tetraology of fallot and I’m facing my second surgery this coming Friday. I had my first surgery when I was 2 months old and I’m 20 now. Through out my whole life I’ve been limited on my physical activities but that usually doesn’t stop me. Being active is awesome! Last summer I noticed some discomfort when I was walking around a lot. Then slowly but surely I began getting sick and fainting a whole lot. I delt with it until January of this year and that’s when my cardiologist told me that they made a mistake. When they repaired my valve they didn’t know it was going to make the right side of my heart swell. It has swelled up so much that it pushes on my lungs and it makes it difficult to breathe. So, this Friday is my surgery. I have been pretty depressed for months. No one my age should have to go through this, and no one understands. Your daughter Abby is not alone at all. If she can be that strong, then so can I. She has inspired me so much. I’ll be thinking of her when I’m in the hospital. Thank you for sharing your story.

    – Amanda McLeod

  • 4. Tony  |  June 18, 2011 at 2:54 am

    Hi there, my name is Tony I am 54 yrs.old and i am a ToF survivor. Please understand that there will be more mountains to climb but we are very special and lucky in many ways. If it were’nt for my CHD i would’nt cherish life as I do. Every waking moment is a gift that i appreciate. I drive a big rig interstate and there is not a moment in my life that does’nt bring a tear to my eyes when i see a beautiful sunset !!!-Us CHDer’s will always appreciate life. When your first wrinkle of wisdom appears on your forehead and your hair turns gray like mine you will jump for joy. We dont dwell on petty stuff, we know better and guess what?…WE know how to enjoy and live life.
    Be well.

  • 5. Jessie  |  June 25, 2012 at 6:00 pm

    My heart goes out to you and your daughter I am 22 years old my mother/father and I got the news of having TOF when I was 3 mo old I underwent my 1st surgery when I was 7 mo I’ve had 4 since, 2 in 07, 1 in 08 and 1 in 09. All back to back it’s not easy nor do I think it ever will become easy No matter how many times you go through it. I get the deep sick feeling in my stomach everytime I walk into the hospital I’m so afraid of going through it all over and over again but I know I’ve gotta stay strong I’ve never shared my story very often because I’m nervous and scared of what others will think or say, your daughter is very strong for being so young I’m sorry that she’s gotta fight this everyday but im very glad to hear she’s doing well.


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