I’ve just read the wonderful comment by the student ,being a mum of a chronically ill autistic 16yr old, and working for social services for 26yrs the words are very poignant. The life long lessons we all endure are very difficult at times but very rewarding thankfully aswell .My Son was a very happy storyteller fun loving little chappie but due to the lack of services /nhs understanding , he now has a diagnosis of PTSD ,low self esteem, high anxiety and Depression .Covid has effected everyone over the last year but welcome to my sons world for the last 5yrs being affraid of dieing ,having just his family to care for his every need ,no education and little understanding from some authorities, we even had no treatment for him under the hospital he had his kidney transplant it was there way or No way !! Which has been very scary as we didn’t feel we trusted them with his overall well being .So it felt like they wiped there hands of his after care ,he’s had sepsis , and his lungs were full of fluid and we had to resort to the peadreactic local hospital and thankgodness they were kind , patient and most of all they listened to our son and he’s started building bridges and started to cope a little with his drs !!These children don’t have a voice in these medical situations and his words to the phsycologist were “They made me feel like a nothing “I can repeat what he said now without breaking down .I’m his mum and have struggled for yrs with what I’ve seen, and been so affraid for his life!! I’ve told his social worker various professionals around the table I feel like I’ve abused my son, because I was supposed to protect him and I lost him mentally and nearly physically several times one being when he was given a huge dose of steroids and he had a huge internal bleed and the renal team new he had esophageal varices that he was known to bleed internally, I questioned could they have asked the liver team for advice! I was told buy his liver dr he could have been given a medication called sucrafate.we were so traumatised ,my son nearly died he was pumping up blood it was horrendous !! Then his notes went missing to add to this already horrendous situation! we could have never imagined subjecting him to anything so appalling
he started fearing for his life as we did ,he was isolated in a room for mths and mths no access to family, being 120 miles there and back !! he had dark moods they were sedating him for most procedures it was awful they put a sign on the door saying he could be violent it was only there a couple of days its illegal to have a little boys information for all to see on a door !!but it was for whole ward to see he had never had a violent episode in his life before he was a good boy in school everyones friend !! he was fighting for his life he was petrified he was going to die The phsycologist explained this to us ! I live with that everyday it haunts me how he was treated well and myself and poor husband only just having surgery himself .my Son asked the dr why has he never regained his health no answer!! But to my boy he was happy doing well in school he was eating drinking normally he said he could pee normally!!it was presumed by the professionals it would be the right thing to operate on him before he went into failure but first a 10hr opp to reconstruct his bladder using his appendix to make a mytrof channel through his navel so he could Catheterization he is hypertensive and he cant accept why we did this to him it hurts him ,hes had infection after infection his words why would you do that when I can wee normal he was devastated, he never went into failure between the 3mths we think hes kidney was no wear near failing stage and his mind and body weren’t in sync and he had the kidney transplant kidney off dad !! And he never recovered to his previous health state .never went back to school and now has saver mental health!! I have flash backs I struggle with myself that how could I have let this happen!! Because I was told by the professionals but they are only professionals in there own field. I got the local pediatrician on board during work up to transplant and the educational phsycologist to address concerns I was having the hospital were not treating him as an individual with learning disabilities heightened sensitivities Asd !!it was a vigorous protocol and they were brilliant with the kidney the first few days of transplant but my son started having dysphoria and they isolated us saying he had c dif he was in isolation for mths it was supposed to be 2wks and home !! 8,000 mile later over 12mths of extreme pressure making us feel guilty if we didnt get there everyday for bloods at 9am on the dot 60miles with a very poorly boy waiting 4 to 6hrs for blood results it was horrendous, the way they treated us .I had a cancer in scare having to have a hemithyrodectomy my husband was struggling to get my son to hospital and he was developing a bronchial infection and was mentally unrecognizable so it was agreed we could it was no longer right to treat him as a protocol but we were assured if at anytime we needed to reconsider they would be there for our son! and thankgod dr Rees a local pediatrician lung specialist saw our son and took on his overall care .we have tried to speak to the renal team but they ask why have we changes our mind we need there evidence our son is on a class A anti rejection drug which by the way his liver specialist changed a 2yrs ago our son had diarrhoea for 3yrs we have a letter sent to the renal team back in the early stages of transplant that liver patients don’t do well on a the anti rejection they had put our son on so 3yes later on finding this letter we auctioned it called for a meeting with liver & Renal drs and the liver dr changed one of his anti rejection drugs hes doing much better on ! And on that note actually our usually supplier has informed us Birmingham children have cancelled the prescription of anti rejection drugs now worrying times we only have 2wks and it isnt something our go can prescribe , our son is transitional and is waiting for kidney team in adults near where we live ! But where is the hand over from Birmingham we could be abusing our son this last 5yrs he has been forgotten about he now has his ASD diagnosis, a learning disability probably due to birthing difficulties we didn’t see him for 6hrs and he was on a ventilator for 3days and none of this being his fault .But why dose everything have to be a battle . So I would like to Thankyou for training these wonderful young ambitious ambassadors off the future hopefully go forward make a difference to these families that really need your help .
Kind regards
Hayley pugh
Mum none paid care for my son