Tomorrow it’ll be two weeks exactly since Harry passed away in hospital. I have to say though, the care Harry received in the University Hospital of Wales was above and beyond my expectations. Having been in mental health services since age 12 I haven’t seen the best part of the NHS at all…but when it really counted, with my son, they were everything I hoped for for Harry and much more. The care they gave him was amazing. They also let me help them change Harry’s nappy and give him like a bath. Obviously it wasn’t a proper bath, but it was the next best thing. The nurses and doctors were always there with Harry. He was never left alone. And the amount of visitors Harry had from both sides of his family just showed what an impact he had on people already despite only being around for two years and eleven months.
The hospital obviously did a room on the ward for either me or Will to sleep in…I slept on the ward for two nights out of the three nights I spent with Harry at the hospital. Will and I were given amazing accommodation which is part of the hospital but I only used it for one night as I wanted to stay on the ward with Harry. The accommodation was fantastic, but that wasn’t what was important to me at the time, I preferred sleeping on the ward to be honest. But from the 999 call, to the paramedics, to the resuss paediatric team in A&E, to the nurses and doctors of the paediatrics critical care ward…they did absolutely everything they could for my little boy. EVERYTHING. It reduces me to tears because I had no faith at all in the NHS after my long experience in mental health care but for my beautiful boy, it was incredible and that’s what matters. And it was why I agreed to organ donation and to allow them to film the operation for teaching purposes…I have to help with the hospitals constant drive to save other lives, to teach new doctors, to continue to better their care for similar cases in the future. I think they told me they already found a match for one of Harry’s organs.
Last night I cried myself to sleep. I miss Harry so much and I need him back. I still don’t know how on earth I’m supposed to live my life without him. I am haunted by his last night and the guilt is still suffocating, it is a heavy one to live with I must admit. I did cry on the nurses of the paediatric critical care ward and mainly the doctors as they had to tell me the horrible shite about Harry’s horrific brain scans…they all told me that what happened to Harry was extremely unusual and rare…I wasn’t to know this would end up being a result. No that’s true, I had never heard of a febrile seizure till now, but I am haunted by that time at 3:45am when I thought about waking up my parents and I didn’t. I chose to look on google instead which said night sweats in toddlers were normal. Harry never read a high temperature…I took his temperature with two different thermometers twice each and never got an abnormal reading. One said 36.3 then 36.4…the other said 36.7…twice…a temperature isn’t classed as dangerous till it starts reading over 39 degrees but Harry didn’t even go over 37, as far as I knew.
I spoke to my dad about the guilt and he said he also felt guilty, he said he wished we had taken him to a GP when a sick Harry was put on my doorstep by his father. I didn’t realise he himself had guilt. But still, it was me that saw some worrying symptoms at night and still didn’t say anything. I thought Harry would be ok in the morning…I thought there would be more time…why did Harry have to suffer such unusually strong, multiple febrile seizures…why him? I know this kind of thing has to happen to someone. And it has happened to others in the past according to the internet.
*****Some time later******
Had to answer the door to the postman. A condolence card from the dentist we all see; Harry had an appointment this summer that I had to cancel and when they asked if I wanted to book another appointment for him I had to tell the receptionist Harry had passed away…it was nice of them to send a card, I didn’t think they would. I got an update from the dog I have been sponsoring in Harry’s name for several months or more now, you sponsor a puppy and pay for it’s training until it has been given to a blind or visually impaired person. The puppy doesn’t look like a puppy anymore! A beautiful black Labrador called Berry. Also in the post was the memorial locket I purchased to put in a photo of Harry and some of his hair and there was another bigger package with loads of little boxes of golden heart pins. I was rather terrified as I wondered if I’d somehow ordered loads of golden hearts by accident whilst I was trying to chose a memorial locket but these gold heart pins came with a certificate that explained it. The heart pins were from the NHS blood and donor transplant department to say thank you to me for making the decision to donate Harry’s organs. I didn’t expect that either which was at first I was terrified I’d ordered heart pins without being aware of it.
Anyway, just went to tell a old friend of the family about Harry who lives in the street, I invited him to the funeral, I know he’d want to go and he said he does want to go.