Surviving Hospital

Posted by Rebecca Highton on 16th September 2020 Additional Needs, Advice & Support, Disabilities

Alfie has spent a lot of this year in hospital, and though most of our hospital visits are planned (appointments, surgery, etc), one in particular was not, and they all came with complications.

Alfie had a gastrostomy in May and that was supposed to be the end of things - he would be tube fed and his lungs would be protected. But of course, it was not. I noticed in the days after Alfie’s surgery his reflux was getting worse, but we were sent home anyway.

We were told to take Alfie back to hospital just a few weeks after discharge.

When we got there, we found out he had lost nearly 20% of his body weight. Nothing they did stopped the vomiting, and this was the start of our longest hospital stay to date, other than when Rory and Alfie were born.

Alfie continued to deteriorate as he could not tolerate any gastric feeding, not even water. The weeks went by and Alfie became more unwell, losing 30% of his body weight in total and dropping down to just 11.9kg. For context, his identical twin is nearly 18kg.

Alfie continued to become more unwell and the only way he kept hydrated was via IV fluids. But every few days he would pull his cannula out or it would tissue on its own. Soon they were struggling to find suitable veins.

Alfie had developed anxiety over the nurses and doctors coming into the room and his heart rate would spike dangerously every time they came in. The procedures became more difficult to do and no one had a plan.

Everything had been tried and it had failed.

This was after watching my child literally vanish before my eyes. No longer was my little boy chubby, happy, and playful. He was malnourished, dangerously underweight, pale, and tired. He would nap throughout the day and night because he simply did not have the energy to stay awake.

There were times we questioned if Alfie would get better. He had so many complications and the doctors were unsure of what to do. Each thing they tried would fail and the situation would become more dire.

Though Alfie is recovering well physically, the mental trauma is still there. Alfie screams when any medical professional comes near him and is inconsolable. In time I hope Alfie will begin to realise not all medical staff will need to do procedures that are painful and upsetting. I hope he begins to trust them again and that this has not caused long term problems for him.