Open Heart Surgery - Los Angeles Hospital Photographer

Thank you for the absolute outpouring of support from those we have never met in person, visits, coffee, smiles and hugs, cards, presents.

Day One

Day Two

I'll be back with more details soon. But things are not looking good on Reuben's heart.

Memory has her own selective memory, for surely were it not for that, we would recall every detail of trauma so as to wish never to revisit it again.

And so it is that the feelings of looking upon Reuben with his cracked open ribcage and glued together chest, the heart and chest being drained of blood in the form of two thick tubes in which the blood rises and falls as the ventilator breathes for him have melted with time, 4.5 years of time.

The night is peaceful but is preceded by the sorrow in his eyes through his tears and those eyes being almost the only part of his body that he has the strength to move, to plead with me, accompanied by almost imperceptible signs from his hands which are tied down to prevent in a wakeful moment, him pulling out his own breathing tube which traces it's way down from his mouth to the path of his lungs. They sign, All done and then that motion drains the last of his reserves and he can only speak through his eyes. I am helpless beyond urging for more meds to both sedate and stop his pain. But i dont break. In the early hours I see he is moving again and I stand beside him to see the tears are returning. The ventilator stops his voice so though he barely moves his mouth to speak, nothing emerges from his lips. He resorts to signing All done again. His sedation and pain meds are being weened to prepare him for the operating room again but it is too far ahead in time. Im now pleading for him to have some respite and i sob painfully. eventually it comes. His eyes flicker and a fog falls upon his senses.

Several hours later he is taken to the operating rom. We are given 3 scenarios by his Ear Nose and Throat Dr, 
1. That he will be extubated meaning the breathing tube is successfully removed and he breathes on his own. As kristi writes, within CHARGE syndrome, there is a history of failed attempts to extubate, and the experience is both traumatic and challenging. It is one of the many uniting challenges we face in our community of families. 
2. That extubation will fail and that they will quickly need to go through the trauma of re- intubating him, or that it will be downgraded in size.
3. That he will require an emergency tracheostomy to secure an airway.
Overnight, I have felt tortured by the What Ifs of yesterday's surgery, the dangerous situation of the anesthesiologist not being able to find an airway. Those thoughts travelled to the possibility of a new tracheostomy, which was removed 2 years ago. It is not only a life saving device, that simple piece of plastic on a tie around his neck through which he can breathe. So rudimentary, yet so life changing in its sterile care.

Our friend Vanessa comes to sit with us during the wait and give us hugs. In the OR, Reuben has first to be sedated which proves difficult so that they can photograph his throat and vocal chords, a bronchoscopy. Then needs to be woken enough to allow him to breathe by himself when the breathing tube is removed whilst still being comfortable. What a fine line the anesthesiologist walks. What an incredible responsibility.

We sit, waiting for the call which seems an eternity away. I wonder, just as with memory, Relief too almost has limited memory for what went before. Does she ever really feel true relief, or is she so tired that the reality of the first scenario, a successful scenario, Reuben breathing by himself, is too much. Yet on this day, and with a beautifully mended heart, it has become a reality.






The night before surgery: