Joshua passed away yesterday at 9.55am. Both Claire and I were there by his side. He went peacefully and quickly while we were alone in the room with him.
The last few weeks have been tough for all of us to say the least as Josh fought bravely and did everything he could to prove the doctors wrong again. Against all odds, he somehow managed to start speaking again a few days after the last entry in the blog. As the pain of his pancreatitis decreased we were able to stop both his pain relief and his psychotic drugs and he managed to sleep soundly with little or no signs of cerebral agitation. The doctors were astonished and even they appeared to believe that Josh could somehow be finding a way back from the brink. He continued to improve the next day and was coherent enough to tell us when he was thirsty and ask for water. He would ask for his blanket when he was cold and tell us when he wanted tucking in or turning the other way. He even begged to play Playstation at one point although that was unfortunately not possible. Some movement returned to his left arm and leg, although his hand remained floppy. It was wonderful to see him pain-free and get a glimpse of who he really was again.
The next day wasn’t good, however, and his blood pressure dropped considerably, his heart rate went through the roof and he developed a high fever. This was put down to an infection, but the doctors were unable to grow cultures to find out exactly what or where it was. Fluids raised his blood pressure for short periods, but it kept dropping back to 50. The danger of giving extra fluid was that it could leak into his lungs. He remained coherent for short periods during this time and appeared to be improving yet again, but shortly after I returned home on Thursday Claire called in tears to tell me that Josh had suddenly had another attack and been left paralysed all down his right side. He was unable to talk, his cerebral agitation had returned almost immediately and he was left screaming again. All his psychotic drugs were restarted and they managed to make him comfortable eventually, but it took a long time.
Friday saw Joseph and I attend his school goal sharing meeting which was excellent and he was giving a glowing report. We spent the day at a wonderfully empty Chessington under a clear blue sky and braved all the big, scary rides that Joseph is now tall enough to go on. Claire called when we returned to say that Josh was far worse and was experiencing real breathing difficulties. He was settled but there was inflammation in his airways and a deep rasping noise coming from his throat. She told me he was unlikely to last the night. I decided to tell Joseph what was happening and that Josh might be dying. His reaction was pretty much the same as Josh’s had been 7 years ago when I told him Alex had died. Joseph sobbed and sobbed, but recovered quickly as children do and asked if he could have Josh’s room, toys and clothes. I couldn’t help but smile. He said many other wise and wonderful things that you wouldn’t expect an adult to come out with, let alone a 6 year old boy but it’s hard to put them down without shedding far too many tears. I told him not to worry about crying, but not to feel guilty about playing and being happy either. He gave me a Hi 5 before settling down in front of the TV with a ham sandwich while I packed a bag for me at GOSH and one for him to stay at various friend’s houses for the next few days. After dropping him off at our neighbours, I drove up to London. A doctor had hung on to talk to me about what they expected to happen and I stayed the night with Claire in Josh’s room, lying next to each other listening to the almost hypnotic rhythm of his laboured breathing through the oxygen mask. Neither of us slept much as he needed changing a few times and I ended up trying to sleep in a chair that had obviously never been invented for that purpose.
Over the next two days Joseph had a whale of a time at other people’s houses while Claire and I kept each other company while watching Josh. It was a strange time and we found ourselves almost immune to the fact that he was lying there and we were waiting for him to die. I guess your brain locks itself into survival mode to protect you. Once again Josh defied the odds with his temperature eventually settling and his blood pressure rising to a comfortable level. His respiratory rate dropped from 60 to a more comfortable 28, although on average it stayed in the mid-forties. The nurses found Claire a room on the adjacent ward so we could both sleep and with Josh fairly settled and sedated we both did to some degree.
The doctors were surprised to see Josh still with us on Monday morning and I returned home that afternoon to pick Joseph up from school and take him swimming. It was a hard call to make, but it was impossible to predict how long Josh had left and we needed to be around for Joseph too. We could both stay at the hospital indefinitely only to have Josh pass away quietly while one of us was on the loo or making a cup of tea and miss it anyway. As it turned out, Josh hung on for us both.
Claire phoned me around 2.20am Tuesday morning. She was fine, but had been told Josh didn’t have long. We made another difficult call and I decided to stay at home until 7am so Joseph could have a settled night and not be panicked. Claire’s sister came in the morning and took him to school. I drove in and made relatively good time considering it was rush hour and a white van carrying seafood drove into the back of me while I was parked at traffic lights on the Old Kent Road. When I confronted the driver he told me his English wasn’t very good. I told him his driving wasn’t all that great either. I took his details, but there was no real damage done and I didn’t want to waste any more time. A doctor was waiting to speak to me, but he had nothing new to add other than to confirm that they weren’t going to try and revive him if his heart or lungs failed - as per our request. He’s suffered enough and we wanted him to be allowed to go with dignity - which he did less than 30 minutes later. Claire and I were together in the room with him. He was on oxygen but his breathing wasn’t too laboured. He was motionless but comfortable and just looked like he was sleeping. We stroked his head, talked to him and kissed him and, apart from a cleaner wandering in to try and clean the floor, we were uninterrupted. I know Josh wasn’t aware we were there, but at one point I whispered into his ear and told him how much we loved him and that it was okay to stop fighting. A few minutes later I noticed his heart rate dip on the monitor, then begin to fall rapidly. Claire and I held his hand and watched as the numbers tumbled down to zero and settled there. After a few more minutes alone with him I called a doctor in to verify that he’d gone. We stayed with Josh for some time after that, talking and sobbing and thanking him for all the joy he’d brought us. It felt right to see Josh go like that – so peacefully. Alex was on a ventilator when he died and we’d had to step back while the team tried to resuscitate him. It was only after he’d flat-lined that we were allowed close enough to cuddle him and say goodbye. We cut a lock of Josh’s hair, just as we had of Alex’s and then dressed him in his Phineas and Ferb pyjamas that he loved. Claire pulled his woolly football slipper socks on over his feet. We asked the nurses to wheel the bed away once we’d said goodbye properly and cried ourselves out. We both gave him a final kiss at the same time as they took him. It felt like Josh had left the broken body he’d been living in behind by then and hopefully gone to a better place where there’s no more pain or suffering. Doctors and nurses came to see us over the course of the next hour to offer condolences and give us huge hugs. There were so many red and tear stained eyes. Josh will be so missed as he warmed the hearts of so many people while he was here. We packed up everything and drove home. Claire’s sister picked Joseph up from school and I met him at the door, explaining mummy was here and what had happened to Josh. We told him that Josh’s parting gift was that we could be a family again. We all cried and cried until Joseph suggested a group hug, which made us howl even louder and longer.
Life goes on, but it will be hard to come back from this. We will though. It will just be harder than last time. We’ve had 12 years of loving Josh as opposed to the nearly three wonderful years we shared with Alex. Joseph has only seen Josh once a week at most for the last 15 months, so he won’t expect to see him playing or living in the house, but the emotional gap he leaves behind is still a huge one because of the huge character Josh was. So wonderful, so caring, so brave. Joseph wants to be heavily involved with the funeral and at one point asked if we were going to choose a box to burn Josh in – like we did with Alex. After explaining cremation to him again, Joseph paused for a moment before asking if we could burn Josh’s body with him naked inside, so Joseph could have his Phineas and Ferb pyjamas to remember him by.
Kids, you’ve just got to love them...
