Continuing son’s treatment journey

H.. e was too doped up on drugs to even open his eyes much let alone swallow properly so a tube was placed into his stomach via his nose so they could give feeds through the tube. However, he wasn’t coping with the feeds and began vomiting. Several anti-nausea meds were given to help prevent this. No bowel movements meant he needed laxatives which created a gush once the dam was broken.

Physio and OT therapists would visit to get his chest cleared of fluid by using special vibrating breathing machines and sitting him upright. Suctioning secretions from his mouth became my new job, hovering over him with a suction tube at the ready as there was so much fluid and vomit being coughed up.

Finally, we were making some progress, very slowly, but enough to reduce his oxygen assistance and get ready to move to the ward.

Now PICU (paediatric intensive care unit) has a nurse assigned to each patient so there is no delay when a child requires help, they are right there and ready. In the ward, there are more patients than nurses and you are your child’s nurse until they can get to you.

Lucky, I had my observant training in PICU, so I was confident with the suction, oxygen and machines. Yet this meant more intense bedside support for my son, along with my own needs to eat, drink and toilet or have breaks.

Thankfully some wonderful friends and family were able to visit occasionally and relieve me. But long days merged into long nights and the noises in the ward of other machines was alarming, sharing the room with other patients and their family, crying children and the odd emergency down the hall, meant very little actual rest. I was exhausted and there was still no end in sight of how long we would be in hospital.

Those moments of uncertainty and exhaustion were lessened when I could see how hard my son was battling through and began smiling again and reaching for me. After many days of him being completely zoned out and removed from the only way I knew him to be, for him to return, filled me with such pride and strength to be his defender and keep going.

After we got on top of his vomiting and he began to slowly eat and drink, things began progressing at a steady pace and we could begin focusing on his actual physio and how to adapt to his new normal that required hoisting for every transfer from bed to wheelchair and back again.

I couldn’t simply pick him up anymore, I couldn’t even hug him or sit him on my lap to comfort him. So much had changed but the nurses and therapists showed us how to handle him and we began working on a plan to get us home. Eighteen days and nights in hospital was definitely long enough for us both.

Now we continue his surgery recovery and finding his new normal at home.