"How long do you think Jason might be? Its just the doctor has the results of the scan and wanted to chat through them with you and he thought it would be better to wait for Jason to get back. I'm sure its nothing to worry about though, but please see if he can be back in the next couple of hours."
Thomas had been sent for a CT scan earlier that afternoon. Jason had left for home, after we had walked down with him, and I sat outside the room, waiting for him to be processed. These excursions around the hospital gave me breathing space from the bubble of PICU, but provided little relief from the pressurised situation that we were in. My more carefree attitude, of not to worry about things until they have happened, had definitely kicked in and I had managed to switch my brain off from really questioning why Thomas was there and what the scan might realistically show. Afterall, they may find nothing additional and I would have spent a lot of time worrying about something for nothing.
At least, this scan may be able to provide a few more answers to some of our previous questions and perhaps some clarity over the time frame we were looking at. I needed structure in my life and had always liked to plan, and so, living hour-by-hour, and, on occasion, minute-by-minute was becoming increasingly frustrating to me. I was hoping that through any further medical understanding of what was happening with Thomas' brain, they would then be able to map his recovery a little better and we would be able to answer the question we had asked ourselves, and been asked so many times by our wonderful friends and family, "how is Thomas?" and "when do you think we might be out?".
When the nurse had asked if I knew when Jason was to return, alarm bells started to ring. The results were obviously serious if they were waiting for Jason. Afterall, they had been happy to discuss the results of Thomas' first scan with me alone; the results where I was being told that our child had suffered some serious brain injury from the meningitis and would have to live with potentially severe disabilities for the rest of his life. Now they needed Jason to be there too, it didn't take much to realise what lay ahead for us.
After a couple of phone calls home, and a long wait for me, reminding myself that, until I was told otherwise, I had nothing to worry about, Jason arrived back at the hospital. The nurse gathered together Thomas' doctor and neurologist and ushered us silently off the ward and across the main corridor, to the lounge, where we had spent happy family time with Lucy and Oliver just the previous day. A hush had fallen over the hospital now that another day had drawn to a close and visitors and patients had headed home. The corridor was empty as we crossed it and the lights in the family accommodation were out. An eerie silence was broken only by our footsteps and the doors opening for us and being closed behind us. I could feel my heartbeat starting to speed up, my palms were sweating and the biggest knot was tightening in the pit of my stomach. I sensed that this moment was a life-changing one but I was still hoping that they were actually now about to present us with a clear plan as to how Thomas' treatment would progress. I wanted to make sure I listened carefully to everything we were to be told and to try to process whatever information we were given.
Jason and I sat down facing the familiar three members of staff on the other side of the room. The glare from the bright lights in the corridor was coming through the window behind them. Thomas' doctor broke the silence.
"So Thomas came here from Stoke Mandeville with a Group B Strep infection, having seizures and with concern over his brain activity. After treating him intensively with antibiotics and stabilising his condition, we performed an MRI scan on Monday, which confirmed the suspected meningitis and showed that there had been brain damage to the front of the frontal cortex and to the back of the brain. The neurologist met with you, Emma, and explained that Thomas did have cerebral palsy, as a result of this, but that the extent of the damage wouldn't be known until Thomas grows and reaches expected milestones. The three of us had a chat during the ward rounds later that evening, where you questioned, quite appropriately, whether Thomas would have a sufficient quality of life following his recovery, to warrant continuing his treatment. And I responded that he would, and that we had not got to the point where further treatment would not be worthwhile to Thomas. I understand that you both met with the neurologist again, the next day, where she was able to reiterate the extent of Thomas' brain damage to you both and show you the images from the MRI scan."
To everything he was saying, we nodded positively in response. He continued to narrate our story and we continued to nod.
"However, as Thomas was gradually taken off the sedation, some of his movements gave us cause for concern, in that he was continuing to have seizures and so we restarted to monitor his brain activity with another EEG. This morning, his blood markers were up and so we undertook an ultrasound of his brain to see if they would help us identify any pockets of infection that may have remained, despite the antibiotic treatment. That didn't show anything of particular concern and so we undertook a CT scan this afternoon. We have received the results of that scan, and it now appears that we have, regrettably, got to that point in Thomas' treatment, that we previously discussed; that it would not be worthwhile to continue his treatment as his brain damage has extended over most of his brain and he won't survive off the ventilator."
My ears switched off. I could feel every pound of my heart and hear my blood whooshing through my veins. That moment just happened, that moment I wasn't worrying about, but deep-down knew was coming. Our entire lives had been thrown up side down once again. We were losing our son, Lucy and Oliver their brother, and our family's identity had been turned on its head. But at least we did now have a plan and a timescale in place, that's what I had wanted, right?
My brain kicked in and told me to maintain my composure. Nothing could change what was about to happen to Thomas and us, so I may as well try to absorb these moments and try to make the most of what little time we had left. I didn't want to look back on this moment with regrets over my emotions or feel that I did a disservice to Thomas in losing control, I could let my emotions surface once we had some privacy and we knew Thomas was finally at peace. Of course, looking back now, I scream at myself, for what was I thinking?? I had just been told that my son was going to die, and I was worried about my composure in front of the doctors?? These were doctors on the PICU ward, and, therefore, inherently, had to deal with similar news to parents on a fairly regular basis.
I'm not sure exactly what had happened in the room for those seconds whilst I was trying to figure out what I needed to do or say, but I know that Jason had asked some practical questions, and the doctors were able to provide clear answers. Everyone in the room seemed to be dealing with this all in their stride (I do know that this is not the case), I needed to show to myself that I could do the same.
"Please can I cuddle him?" blurted out of my mouth. I hadn't even consciously realised that I had missed my physical connection with him over the passed six days in intensive care, that I had not held him in my arms all that time, but it had routed itself deeply in me and found its ways out of my mouth without any thought. As those words fell out of my mouth, so did the tears silently fall out of my eyes. No matter how hard I tried to hold them back, there was nothing to stop them from coming and coming. This was not how this was supposed to be nor what he deserved. Bleary eyed, I looked at the doctors and as my gaze met their's, I could see that they did not want to be telling us this news. How had it come to this?
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