BiographyAlfie was born not breathing and therefore suffered brain injury. He spent time in NICU being cooled and made stable. They said he wouldn't make day 1 and he was blessed on day 4 as we thought we were going to lose him. He went to palliative care day 10 to 14 where they took his intubation tube out. However, Alfie was not ready to give up and kept breathing beyond all odds. We finally got to bring him home and had a lot to learn.
Alfie was in hospital a lot before he was 5 years old with continuous chest infections. He hasn't got a safe swallow and at 10 months had a gastro fitted and at 4 years old a jej. Despite this he still struggled with managing secretions. He now has a regular physio program just to keep him well with nebs, suctioning and oxygen.
During COVID Alfie did really well and put 8kgs on as we were shielding. He continued this for around a year after, then he slowly started going back into hospital for chest infections.
In 2023 Alfie ended up in hospital 3 times with really bad dystonic storms. This continued into last year and was triggered by feeding. Alfie spent time in hospital from Feb 2024 to the end of May in picu, hdu and on the ward. He underwent emergency surgery as his gut had twisted. He came home with a stoma, pic line and tpn. However, he continued to have another 10 admissions from the end of May to the end of August.
At the end of August they reversed the stoma and he became more stable until November when he started declining again and ended-up back in picu in December and we were in hdu from Christmas eve. He then managed to come out of hospital at the end of January and luckily so far this year he has managed to stay out except for a couple of days. He continues to have a Hickman line for which we have to follow very strict guidelines due to the possibility of sepsis,so have to go into hospital if he has a temp over 38.
However, he is smashing 2025 so far and continuing to show us he still wants to be here and smashing expectations.
|
