I forgot to wear a poppy this year nor did I observe the minute silence at 11. I was too engrossed holding Fabian’s hand and gazing into his beautiful face as he lay peacefully dying in a hospital bed, his respiratory rate becoming slower by the hour.
Just 4 days before, he had been at home, weak but stable, enjoying visitors to the house. That week had begun with an unplanned trip to Legoland. It was the final day of their season and thankfully, one last chance for him to enjoy his favourite theme park. The next few days were spent in daycare having the usual reviews and blood products. Fabian agreed to having an NG tube fitted so that we could run overnight feeds. He had effectively stopped eating since the last sepsis in early October and as the gastrostomy had failed too, was slowly starving himself. This was a daily source of anguish for us, so having the tube back was a relief, short-lived as things turned out. Then we were telephoned on Friday to be told that a blood culture showed another gram negative infection was present. We immediately started oral antibiotics but within a few hours he had deteriorated to such an extent that we needed an ambulance ride to A&E where a team of nurses and doctors worked feverishly to stabilise the developing sepsis. Déjà vue, I thought, as Fabian lay there on oxygen support, heart racing, BP falling. At such times, the doctors take you aside to discuss ‘options’. The gravity of this situation was made clear. But being the fighter that he was, Fabian made it out of emergency and onto the ward and the immediate threat to life was over. However, this time his BP did not fully recover and this set in motion the consequential failure of his organs as they were gradually starved of oxygen. Alongside this, Fabian’s disease symptoms were rising fast, so inevitably he required a morphine pump to manage this. His agonising bony pain was thankfully subdued by this potent drug and he slipped into a semi-comatose state.
We had started to call friends and family to visit and many came. Fabian knew this and attempted to rally, giving us flickers of hope that the infection might yet be fought off. In truth, his kidneys had failed and fluid and toxins were steadily building inside, placing pressure on his heart and lungs. They attempted inserting a urine catheter, a most undignified procedure, but strangely only after they withdrew it did Fabian wee! He just continued to surprise. Then came a seizure. This was both unexpected and frightening, yet once again he pulled through with no immediate signs of neurological damage and continued communicating with small sounds and hand movements.
I guess any denial that we were at the so-called end of life stage finally left us once they stopped further transfusions. These were simply adding to the fluid build up and exacerbating that problem. I requested they keep up the antibiotics which they did more out of compassion than for any meaningful purpose. In any event, his PIC line then failed so we lost all intravenous access.
Now Fabian had been asking to go home and it became our focus to make this dying wish a reality. We also had the option of transferring to a nearby children’s hospice where practical support would be on hand. Time wasn’t on our side, though, and we were advised the very act of transferring him could be fatal. So we agreed to stay the Monday night and reassess things in the morning. That night was agonising. Our girls were with us as we cuddled round Fabian’s bedside, speaking loving words to him as he lay serenely, eyes closed, his breathing by now, alarmingly slow. Fluid in his lungs was making this quite laboured but he maintained this minute by minute. I glanced at my watch, noting it was past midnight and was now Remembrance Day. Would this be the day we would never forget? Somehow, we still kept praying for healing. Faith in extreme adversity is a powerful force and we knew God raised even from death as He did so through Jesus on earth. Well, we. didn’t witness a miracle that night, but by morning there was a noticeable improvement in Fabian’s breathing, enough for the decision to agree to discharge him and go home. There is considerable bureaucracy in such a situation and this delayed matters by vital hours, but by early afternoon Fabian was safely back where he had wanted. It was so very timely. His best friend had just arrived and was able to make one last piece of Lego and place this in his hand. Just a few short hours later Fabian drew his last, surrounded by our presence and love as we said goodbye to him on this earth.
He now lays at rest, surrounded by treasured items as we await his service of remembrance. It will be a fitting occasion to mark the passing of a unique little boy whose short life touched and impacted so many, from royalty downwards. A huge sinkhole, as it were, has opened in our family but we have the assured, bible-backed guarantee of meeting him again and in this, we take comfort for now.
So to the many thousands of followers of my family’s journey recorded through this blog, you have been a silent, continuos support to us, especially to Fabian knowing as he did that he was known and loved worldwide. I dedicate this site and it’s future development to his memory and pray that our story will be a resource to comfort, support and encourage any who must tragically face the terminal illness of a child. Please post a comment below that we can record these in a book of condolence.
“Friends, we want you to know the truth about those who have died, so that you will not be sad, as are those who have no hope.”
1 Thess 4:13
He will be missed, but always remembered.
Fabian Luke Sebastian Bate 02/03/02 to 11/11/14