Another step closer to Fontan

A couple of weeks ago Hannah’s heart catheter went ahead smoothly, so smoothly we didn’t have to stay overnight in hospital! She was first up that morning, which meant a super early start, but Hannah seemed to enjoy the novelty of getting up before Daddy and the twins were awake. She even said to me “why don’t we stay at the hospital tonight? We haven’t done that before!” I hadn’t even told her we probably would be staying overnight, but that excitement at trying something new did put me at ease. We had read her book earlier in the week, so Hannah now has some knowledge and language to use about her “special heart” which needs extra help from the doctors to help her grow big and strong.

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Hannah keeping busy while we waited for it to be her turn

The waiting in hospital is never easy, especially when you have a hungry 3 year old (she fasted from midnight). But Hannah did really well, and the waiting room was set up to keep her occupied. Her Godmother Nat had also put together some great activities which kept her distracted from her tummy grumbles haha. And each step of the way things being new helped, she loved lying down in the bed and being wheeled around.

The procedure took a couple of hours, and while I waited I read a really challenging book – “Devoted” by Tim Challies, stories of men throughout history and their Godly mums. I was challenged to think about my approach to being a mum, and whether I truly trust God for whatever lies ahead for all of my kids. It was a timely read!

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Even Hannah’s pillow got a hospital band!

After a couple of hours she was back in recovery and on the ward, and her intrigue about the monitors and cords she was attached to quickly turned to frustration at not being able to move around. She had to lie flat for 4 hours to make sure the blood flow resumed normally, particularly to her leg after they went in via the femoral artery in her groin. To stop the bleeding, that had a small pressure balloon on it, which they slowly released air from over the afternoon.

While I was waiting with her I had time to reflect on how much harder the bigger surgery will be with helping her through recovery. So it was timely that a clinical nurse consultant came to visit to talk to me about that very thing! Turns out the heart centre has a team who work together to help families and the kids prepare for the Fontan surgery. I’m not sure exactly what this will look like yet – but it involves the physios, OT and psychologists / social workers. Helping us prepare Hannah for what will be days lying down! Eeeek. And for the mental and emotional side of things too. I’m so thankful that they have thought through these things and that they’re not just concerned with the physical aspects of the surgery and recovery.

But most of Hannah’s frustration at lying down dissipated when she was allowed to sit up and her dinner arrived. I want to bottle up her excitement at having dinner in bed, as it’s the only thing she’s told people about since! “Did you know, I got to eat dinner IN BED!” and “Daddy will think this is SO funny, that I got to eat dinner in bed!” Ahhh to be three. And then it was home time! She spent a week on limited activity, but wasn’t bothered by the bruising on her neck or groin which have most faded now.

Her catheter surgeon was happy with how the catheter went, they were able to collect all the information they needed, and her heart seems suitable for the big surgery to go ahead. And after meeting with the surgeon who operated on her when she was a baby, the plans for her Fontan are in place. It is tentatively scheduled for the end of this year, but we understand it can be pushed back multiple times.

IMG_6349The other thing we brought home was some extra Heart Beads to add to Hannah’s long string. There’s one for the catheter, plus the blood test, hospital admission, having the monitors on, the echocardiogram etc and even one because it was a “very brave day” haha. Hannah doesn’t really understand these yet, but I think they’ll be a helpful way to explain her journey to her when she’s older. I’ve written about them previously here.

With us, please…

  • Give thanks that Hannah’s heart catheter went smoothly and she has mostly positive memories of being in hospital.
  • Pray for wisdom for her surgeon and the heart centre team in planning her big surgery, and for us in helping Hannah process what having a special heart means.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. – Romans 15:13

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3 thoughts on “Another step closer to Fontan

  1. Hi Sarah and Gus, My Small Group at St Andrew’s have been praying for Hannah and your family this year and we will continue to do so, looking forward to good news when the op is over. Warm Regards, Lesley Courtney-O’Connor

    Sent from my iPhone

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