Monday, 17 December 2012

Alyssa Loates

My daughter Alyssa Loates who was 8 at the time got the Norovirus in march 2012, at first she had all the normal effects but then she started to go floppy and started to have confused speech, she ended up in Medway hospital early in the day on the 12th of March and got worse, Doctors tried to suggest it was her Autism, but I argued as her Autism is high functioning and she acted nothing like this healthy, she was screaming, delusional, floppy and could not walk. She was getting worse by the minute and could no longer communicate, as her speech was completely jumbled and nonsensical. She was clearly hallucinating, pointing to the wall, saying things were there, biting her lips. The Doctor put her on a IV, of just saline, he said he hoped that a miracle would occur and just like last time, she would wake fine in the morning (4-5 months before she was in for suspected meningitis/encephalitis) she screamed for hours, she nearly fell out the bed as she could not stand, I remember calling for help, and nothing was done, She eventually slept after a few hours. The next morning the doctor caring for her that day said he had a dream about Alyssa which lead him to come in two hours early on his shift, he asked me to wake her to see if she was her normal self, so I woke her, and she just screamed, and screamed, and screamed I don’t remember him doing anything other then walking out the room.

Alyssa was clearly in agony and doctors still didn't know what was wrong, the Doctor done more and more blood tests that day, being very upset, and clearly worried, eventually he did an ammonia blood test showing Alyssa had OTC, Alyssa had seen doctors all her life and this condition was missed, it's a metabolic condition called OTC deficiency, The Doctor then took her for a CAT scan which he told us was normal, and treated her with another child’s medication as they had the same condition as Alyssa had now been found with. The ammonia kept rising, so the doctor doubled the medication. Evelina (The main metabolic Hospital in London for Alyssa's condition 'OTC deficiency' that Alyssa had just been found to have ) knew the state she was in, but said they had no beds, so they didn’t come for her. It was getting late and Alyssa by now was cold and stiff and Doctors were checking her eyes, one was dilated and not responding to the light, Alyssa then started having seizures, she was seizing uncontrollable, and had stopped breathing, The Doctor hand pumped her and phoned A&E to ask for the respirator system back as they had borrowed it, and they refused, as they were currently using it, so The Doctor had to continue to hand pump her whilst administering more and more epilepsy medicine to stop the seizures, this went on for what seemed like an hour, eventually they stopped and Evelina came for her, the Evelina ambulance team ventilated her and Alyssa went by ambulance to Evelina, when we arrived it was now the 14th March 2012.

Alyssa was admitted to PICU in Evelina. By admission to Evelina Alyssa ammonia was under 100, so they did not have to do dialysis, which is a treatment for high ammonia. Alyssa was settled into a bed, we was introduced to her nurse, and told she would get 1:1 nursing and never be alone as she was still ventilated. We were introduced to the Doctor at Evelina, who told us Alyssa would be fine and not to worry. We was given a room in Evelina hospital so we could be close to Alyssa, later that day they took Alyssa for a MRI scan. The results came back that day but they would not give them to us, they said there was some swelling, but they would explain in the morning. We stayed as late as we could with Alyssa before getting some sleep.
The next day they arranged a meeting, they explained the MRI had shown swelling, currently in the brain stem, Which controls the heart and primary functions, we asked if they could cut her skull to relieve pressure, they said they couldn’t due to the area. They said the next 72 hours were crucial, as its her brain stem which controls the heart, they said she would do 3 things, she would die most likely within 72 hours or she would wake and move, which they hoped for, as the rest of her brain wasn’t damaged, or she would wake and do nothing, and we would then have to discuss things, we were completely devastated, it made no sense to get this far for her to die now, that day the song In The Arms Of an Angel by Sarah McLaughlin started to randomly play on my phone, I was was certain it was Gods way of saying Have faith she's in my arms..

The next 3 days were critical, they occasionally put her on a cooling blanket, as she kept having raised temperatures, but they didn’t use it all the time, sometimes, they just used numerous fans and cold compresses in her groin, neck and armpits. Her blood pressure kept spiking, so they just gave her saline to reduce the brain swelling. This happened quite often, and she had temperatures, then within the 72 hours her blood pressure shot up, and her heart rate shot very low, the alarms all sounded and many doctors came, just giving her saline, and more saline. I asked a Doctor what was happening; they said she wouldn’t live the next 20 minutes, let alone the full 72 hours, that her heart would just stop and there was nothing that they could do, as it was the primal part of her brain what was damaged and if her heart stopped it was because the damage was too great. All the machines blared, and the doctors just gave saline, nothing else. They told us to call the family and a priest. I held Alyssa’s hand and begged her not to leave me, I said I couldn’t live without her, I didn’t want to, and eventually she stabilised by herself to the surprise of the doctors, they said if it happened again she would not live.

She remained stable so we were moved to accommodation at Ronald McDonald house, which was about a 20-minute bus ride away. Alyssa was still having issues with temperatures, and they still only occasionally used a cooling mat, most times just fans were used. One night whilst we were in Ronald McDonald we got a phone call from Evelina, they said her temperature had hit 40 degrees, and caused seizures, but they had stabilised her and we didn’t need to go in, We went in the next morning and I asked the nurse about what had happened and they denied it happened or that they had ever contacted us, I checked her charts and there was no mention on there, and her temperature had been marked as normal all night. I spoke to the ward sister asking if a temperature of 40 degree would cause seizures, and she said it would, This occurred after the first MRI but before the 2nd MRI. I recall them doing the 2nd MRI this same day.

The 2nd MRI showed the mass had surpassed the brain stem and caused swelling in her whole brain. We were called into a room and told this by doctors. We asked the neurologist what Alyssa’s best-case scenario was. He said she would never walk, she would never talk, she would never come off the ventilator, she would be a vegetable, Another Doctor then started talking about Savannah ward but the neurologist interrupted her and said we would never get to Savannah ward and we were living in a fantasy land, that we should turn off the ventilator if given the option as otherwise we would be subjecting Alyssa to a torturous life, with chest infection after chest infection, leading to a horrific death, that other parents had not done this, and regretted it. The doctors said we needed to make the decision to turn off the ventilator so when they attempt to take her off the ventilator, if she failed to breathe, they could let her die, rather then putting her back onto it.

We said we needed time to discuss this and went for a walk, we decided we couldn’t give her no chances, that we need to at least try once, as it felt like murder to us. Like giving up before giving her a chance to fight. We told the Doctors of our decision, from that point on we were followed round by numerous neurologists, harassing us to turn off the ventilator, to the degree where my dad had to tell them to back off, and I cried and said to the neurologists why are you trying to make me give up hope. The neurologists then backed off. .

 Alyssa was in PICU on life support for 13 days and in a coma for over a month.

The day came when they said they would attempt to take the ventilator off , so Joshua (Alyssa's twin Brother ) came up to be given the chance to say goodbye to his sister as the worse was expected, in case anything went wrong. Alyssa was in PICU ventilated for 13 days. Luckily everything was fine and Alyssa came off the ventilator first time, against all medical science Alyssa breathed by her self even though it was apparently neurologically impossible for her to do so. However Alyssa had diarrhoea still and stool samples had gone missing, so more were done, they then found out Alyssa still had the noro virus still, which she had since the 12th March, so they quarantined her until she was admitted to Savannah ward in a side room. They could not stop the diarrhoea so they had to put a picc line that went from her arm to near her heart to put TPN in her veins. The TPN stopped the diarrhoea and she was then cleared from having the noro virus, and went onto the main Savannah ward but in the high dependency section. Since that day the doctors stopped telling us what Alyssa would do and instead come to see, as the only thing medically they could tell us is that she shouldn't even be alive, one of the top neurologists in the country now call's Alyssa her Miracle Girl.

At first she couldn't even move her eyeballs but has slowly been regaining some control she was sent to Tadworth the children’s trust for 3 months for rehab,with only 30 minutes a day of physio, not including weekends and bank holidays, we were very disappointed with which was supposed to be intensive rehab, but were grateful it gave us enough time to find a suitable home that could be adapted for Alyssa. Due to the high cost of Tadworth, the Primary Care Trust wouldn't fund her any longer there and she was sent home to regress, while still on trial for an unlicensed medication in the community, it was classed as an unsafe discharge,

I should note that the care side of Tadworth by Camelia House was excellent and we appreciated the dedication and compassion Camelia showed, still she’s improving as me and my husband spend everyday and every minute exercising her, since we came home in September Alyssa is now able to stand with support, she has started saying words and sentences at times, and continues to improve even though we was told she would regress at home by Tadworth, Alyssa  has been given permission for home schooling as it was agreed due to the complications and effect it could have on her metabolic condition due to various reasons it was best not to put her health at risk,  my daughter is fully dependent at the moment and requires 24 hour care that me and my husband do for her.