Tuesday 6 November 2012
9:47PM, Caden is alive.
At 4AM this morning (GMT), Angela and I were abruptly woken by a phone call from the nurses attending Caden. It was not good news. Bleary eyed and barely conscious, I listened as they explained that Caden’s condition had suddenly worsened, not fully comprehending what I was hearing.
Something about lung infusion and high blood pressure, that if persistent, would result in opening up a new drain into his chest. Though we are only minutes from his bedside, we knew that it would be next to impossible to actually see him, given all that his Blue Angels would be doing to rectify the situation. So we waited until 6:30AM for our breakfast with Caden.
3 X-rays, 2 echoes, multiple new infusions (including inotropic drugs), a new drain to his lungs, new gasses, like nitric oxide, a more than doubling of his ventilation assistance, a pile of boluses . . . basically 10 steps backwards, is what we discovered had taken place during those 2 1/2 hours. Caden was once again very unstable. My heart sank. It felt like a blow to the chest.
Caden’s lungs were like wet sponges, filled and surrounded with excess fluid. The right chambers of his brave little heart were struggling. He had stopped passing urine and his fever was once again becoming unmanageable. The most likely cause of these new problems, and they were many, was a secondary sepsis, a possible new infection brought about by necrotic tissue in the lower extremities.
Team Caden, prepping for theatre, were extremely concerned about the new risks these complications presented. Not least of all during a procedure involving potential amputation. After an extensive consultation, doctors decided that the benefits of surgery outweighed the risks now threatening Caden’s life. We only knew to pray.
The previous night had been much more difficult than I expected. My abiding memory of Guy Fawkes Night will forever be of a beautiful mother gently stroking her son’s legs and comforting him with breathless hymns of healing. We stayed as long as we dared, and retired to another four walls to weep and to lift our son before his maker.
Some 11 hours later at 10AM, Mummy and Daddy gave their precious little boy a tearful kiss goodbye and whispered our love and blessings. We took the long, slow walk back to the waiting room a little numb, a little lost, ever hopeful. It was going to be a long day, and the subsequent wait felt like an eternity, an eternity of nail-biting nervous praying, eating, and chatting.
At about 2:15PM, the orthopaedic surgeon came unexpectedly to the hospital cafe where we were with family and friends. An observer told me later that the interaction was one of the most beautiful things he’d ever witnessed. On the inside of that huddle though, we spoke of not so beautiful things. Angela and I embraced him as he told us that both of our son’s legs had been removed, the left leg above the knee, and the right leg near the top of the thigh.
My head swirled a little, and for a moment I left that time and space and returned to a day in the parkwith my son, running and dancing in his usual boisterous fashion with his brothers – they laughed. In that moment, the nightmare was over, and I imagined teaching my son to ride his bike, swim across a pond, and watch him take the stage by storm in his first school play – it was worthy of a standing ovation.
At the earliest opportunity following the consultant’s brief report, I ran to be by my son. I kissed him. I touched what remained of his limbs and kissed them too. I touched every part of him I could and whispered a lullaby, a Father’s song.
There are only so many words one can use to articulate the heart. I confess to struggling a little, but my dear friends, I want to also tell you of the many miracles today that my Father in Heaven did for my little boy.
It is a miracle that Caden is with us, that he survived the night. It is a miracle that nurses and doctors stabilised him when they did, that many of you awoke with Caden on your mind at that exact time. It is a miracle that he survived the surgery when they were prepared for the worst. It could have easily been our last kiss goodbye.
It is a miracle that they saved what they did of his leg when up until today surgeons had planned to remove his right leg to the pelvic joint. Now he will be able to sit, to wear and use prosthetics, to walk and . . . who knows what? It is a miracle that he did not bleed out. In fact, there was very little blood loss, and no blood had to be given during his operation. It is a miracle that the tissue and muscles Caden is left with in his lower limbs is healthy, much healthier than anticipated.
There’s more . . .
Very early on, we were told that Caden would lose his left arm, that it was as dead as his right leg. Dear friends, Caden’s left arm is alive, to the fingertips; fingertips that once looked like ash at the end of cigarette. The only potential loss to this hand would be the tip of his ring finger. In fact, in many ways, it is stronger than his right arm, which was always the least scathed. There is the threat of losing the tips of most of Caden’s right hand, but given the progress and degree if healing that has taken place, plastic surgeons will wait again to see what happens. Dear Lied, let it happen.
Not only that, the pinking is extensive, and other than the upper limbs, there is no deep tissue damage. There is no more black on his lips! The red areas are disappearing all over his face to leave more pink. The black areas on his cheeks and chin are continuing to get smaller, and as with most of his skin, doctors are content to let the pinking continue. Rather than great swathes of skin grafts on his torso and face, we’re looking at possibly just patches.
An extensive examination of his precious frame was undertaken, and every member of Caden’s theatre team wore a smile today. A smile! In the midst of the most horrific moment of my life, I also, bafflingly, found myself “counting my blessings” and thanking God for the “good report.”
Furthermore, Caden’s X-rays, post-op, were clear and good and much improved. He’s off nitric oxide, and they’ve brought down his ventilation assistance by about 30%.
He is by no means out of the woods, and his fever is still a significant concern, but Caden is alive. It has been a deeply difficult day for my family, and I’m sure that there will be many more to come on this long journey home. Today, I mourn for my son, but I am also so very grateful that he is here by my side and that once again I may be mesmerised by the beauty of his bold beating heart.