Update on Ellis’ recent hospital visit and procedures

Last week passed like a whirlwind. Wednesday was her pre-op, and on Thursday Ellis had her MRI and heart cath.

Till Tuesday I avoided having the conversation with Ellis, but Alison, the Child Life Specialist from the hospital, recommended talking about it the day before the pre-op; too far in advance would unnecessarily raise her anxiety and not telling her the truth would make her mistrustful of me and the whole process. Much to my relief, Alison emailed me excellent ideas on what to say and how to say it.

It went something like this:

Now that you are a big girl and already four years old, the doctors need to check how much your heart has grown. Remember how doctors take special pictures of your heart. They are going to do that again, but this time you will take a hospital sleep medicine that smells like cotton candy. We may have to spend one night at the hospital and you can bring your favorite toy and blankie. Would you like to help me pack?

When Ellis heard that we were making a trip to the hospital, she put one hand on her hip and with her other hand, she slowly tapped her index finger on her lips. “Mommy, do you think that’s a good idea?” she asked.

I tried to be funny and flexed both my arms like weightlifters, made a silly face, and said that the doctors will be surprised to see her heart so strong and powerful. She chuckled, probably out of charity, but her eyes welled up with tears. I have to admit it was a pathetic attempt on my part to console her.

Elliot looked up from what he was doing and frowned at me. He gets defensive when someone other than himself makes his sister cry. His eyes turned red and his voice shook when he asked what he would he do if he wanted to play dinosaurs with Ellis. I reiterated the same monologue while he kept wiping his eyes with the back of his right hand.

It was overwhelming. When I promised toy surprises after we get through the next couple of days well, they cheered up a bit. I kept checking the clock to see when Chris would get home and he could field their questions. Ellis was adamant in telling me that she wanted to stay home and to call the doctor to cancel the appointment. Elliot was trying to squeeze in as much time playing dinosaurs with Ellis that evening. Out of the blue, he asked me what he would do if he needed me the next day. I told him to call me on daddy’s phone.

My heart was troubled too. It’s never easy to see Ellis in the hospital and Elliot experience separation anxiety. We three are almost always together!

Now that a few days have passed, last week seems like one long continuous day. Nevertheless, I’m happy to report that Ellis had no complications from the heart cath procedure and we were discharged that afternoon. The doctors took precautionary measures and used new kinds of medicine to prevent the side effects she experienced last time after her heart cath: side effects from the anesthesia and the contrast dye on her kidney. Meeting with Allison at the pre-op was helpful and prepared Ellis for what to expect during her MRI and heart cath procedures. Dolls were used to explain the roles of the doctor, mommy, and the patient, and Ellis played the nurse role in taping up the cath sites, on the neck and leg, with bandages, placing the anesthesia mask over the doll’s mouth and nose, taping the medicine straw (IV line) on the doll’s hand.

What surprised me was Ellis’ maturity and resilience. She seemed timid at first and did not want to talk to Alison and the other doctors we met with. Slowly she warmed up when she realized that it was only a consult day – just talking. No painful pokes involved. She did not cry once during the entire pre-op visit and on the day of the actual procedures. When we came home and recounted the day to her older brother and daddy, she said that the whole thing was “easy peasy” and “not scary at all.”

We won’t know the results of the data for the next week or two. The MRI folks need to analyze the data and then the medical team reviews and decides which surgery is needed next, valve repair or the third staged surgery called the Fontan.

These hospital trips wear us out physically, mentally, emotionally, spiritually, and life comes to a standstill. Survival mode kicks in and we go on autopilot. In this blurry fog, we are grateful for friends who lighten our load and share their kindness with us.

Friends, thank you so much for the encouraging texts, phone calls, impromptu visits, coffee for mama, and food for the family! We are blessed! When we feel stretched thin and worn out, someone reaches out and lifts our spirits! Just amazing.

Waiting begins again, but we’re in no rush to get back to the hospital for the next procedure. They can take all the time they need. For now the four of us are going back to our normal routines and enjoying the sweet slowness of time that summer brings.

10 thoughts on “Update on Ellis’ recent hospital visit and procedures

  1. i chuckled when i read about ellis putting her hand on her hip and tapping her lip with her pointer. smiled about elliott getting defensive about anyone else making ellis upset (that is brotherly love!), and cried when you made your attempt to be strong and funny. esther – thank you for sharing. praying for you and your family!

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  2. Your family is so lucky you are their mommy πŸ™‚ What an awesome advocate you are for your daughter (and I can totally see the hand-on-the-hip “threenager” attitude, ha!). I love Elliot’s protectiveness, too. So glad you are writing! Thanks for sharing.

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    1. It’s tough being a mom, especially to small kids! Thanks for the encouragement!
      When you told me that you were writing a blog, that inspired me to step out of my comfort zone. Happy to share my journey with you!

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  3. You are amazing! I could just imagine both kids and their interactions. I’m so glad you’re able to share. Stay strong Mama!

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  4. I love how your writing is giving me the opportunity to know each of of you a little more as you share this oh so human journey with us …courage, faith, fear, sadness, love, patience, fatigue, care, humor, humility, frustration, wonder, and SPIRIT which inspires all of us to keep going…our prayers are with you and Ellis always and especially next week …brave,sweet Ellis…keep writing Ester, keep sharing with us, you inspire us, your life is like the songs of wild flowers πŸƒπŸŒ±β˜˜πŸπŸƒπŸ‚β˜˜πŸƒπŸŒΎπŸŒΊπŸ€πŸƒπŸ‚πŸŒΏπŸƒπŸŒ»πŸŒ±πŸƒπŸŒ³πŸŒΎπŸƒ

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    1. Thank you for the sweet words of encouragement!! I feel so blessed to connect with you and with other people through my writing and to have this space to share. It’s been and is still a tough journey. It’s going to get harder soon as we get ready for another surgery. But we’re praying that we’ll resume some kind of normalcy after this. Yep, we’re like wildflowers. Trying hard to bloom wherever we are! Once again, thanks for the positive words and for reading!

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  5. I love how you are able to share this journey with us…im getting to know each of you intimately and with such joy and compassion because of your honesty and humor, and wisdom…we’re with you all the way…your spirits are inspiring like the songs wild flowersπŸƒπŸŒΎπŸŒΏβš˜πŸ‚πŸ€πŸŒΌβ˜˜πŸŒ»πŸŒ±πŸŒΊπŸŒΉπŸƒπŸƒ

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