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Four Years Later

Four Years Later

Alfie had his fundoplication surgery in August, and I can barely look at the pictures of him from when he was in hospital. The surgery itself went well enough, but Alfie’s recovery was not straight forward. Alfie is a prem baby, a SCBU graduate. He was gravely unwell, and he came home on oxygen. Alfie needed oxygen once more after his surgery.

This follows the weeks of cannulas and x-rays and blood tests and procedures he had endured during his last stay just a few weeks before.

Honestly, I barely coped.

When the surgery had finished and I was called to go and see Alfie in recovery, I immediately knew something was wrong as Alfie needed suction for secretions. They reassured me this can be normal, but this is a child who has had numerous surgeries in the past and never needed it.

When we got back to the ward, things just got worse. Alfie simply could not breathe. The machine alarmed and Alfie changed colour. His saturations continued to drop before my eyes and nurses came running in to help. Alfie could not even cope with the oxygen mask on his face as he has his own PTSD from our 6 week stay of nurses and doctors doing procedures on him, so would scream and hold his breathe as they tried to help. We had to turn the oxygen up to full capacity and I held it inches from his face so the oxygen would help but he would calm down. That was how we spent our night.

Alfie had so many desaturations that night that I lost count. Even with the oxygen helping him to breathe, his body just could not do it. And all I could think of was him being a new-born baby. His tiny, pale body in the incubator, with what felt like hundreds of wires and lines connecting him to machines. And that is how he looked again, but this was nearly four years later. Four years and we were back to the problems we had had when he was a premature baby.

We were back to the question of is Alfie going to get better.

After a lot of suction and chest physiotherapy, Alfie managed to start breathing on his own again and was discharged shortly after. But the trauma is ever present. Any time Alfie coughs, or his breathing goes quiet, I panic. I am back to having the baby monitor on higher settings so I can listen for changes in his breathing overnight. My body wakes when he goes quiet and I cannot settle again until I physically check he is ok.

Though Alfie is recovering well, mentally we are back at square one with the struggles he is going through.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
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Rebecca Highton

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I am a mum of twins, one has special needs. I enjoy blogging about life and the reality of parenting.

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