The best day

First of all :

We made the decision to bring Ford to Toronto instead of Edmonton principally because we knew we had some good friends here who could help us weather the insanity of the experience - and that has turned out to be no small feat. With estimates of the length of surgery ranging from 6 - 12 hours depending on who you talked to, we knew we were in for one of our roughest and most sleepless nights yet. After walking Ford into the OR at 8:30pm last night, we retreated to the "surgical wait room" to start counting down the minutes and quickly realized that there was no way we could sit on uncomfortable chairs nestled between clotted masses of already snoring families enduring similar circumstances for the rest of the night. So we abandoned it for the deserted cafeteria and started making calls.

We very quickly had an impromptu and uproarious party replete with single malt scotch, bbq'd sausage, mixed berry crumble, samosas, roasted veggies, juice, chips, chocolate, and Lord of the Rings Monopoly - a spread of food and fun that covered 3 tables, all mustered in under an hour, that kept us nourished and sated until nearly 3am. I have not laughed as hard as I did last night in a long, long time. Susan, Adam, Mike, Myia, Lindsay and Eric you managed to turn the most unbearable night of my life into one of the best. You are all of the highest caliber and we can only hope for the opportunity to repay you in kind -Here's to you guys and the possibility of a summer full of picnics and backyard BBQs!

Ford has had an amazing day. We have gotten so used to seeing him come back from the OR in various states of perilous trauma, swollen and grey and covered in blood, with anxious crowds of doctors taking stock of all the unexpected complications. We were not at all prepared for this new reality.

Our little baby was suddenly and completely free of his edema. The bloated sack of fluid that had replaced his chin over the last few months, his bruised bug-eyes, all of it gone. His oxygen saturation which swings daily between the 50s and the 70s was holding steady and 100%. The oxygen saturation of his brain, which is measured apart from the rest of his body and has never in his life sat much higher that 55%, is now 95%. He is probably high enough alone on his body's new ability to generate oxygen that he could ride through his recovery without any other drugs for pain management. And the most amazing thing of all? He is pink. Little boy blue is gone.

Two hours post-op they lifted his muscle relaxants to see if he would wake up. A huge worry during the procedure was the risk of an uncontrollable hemorrhage, so they not only had to keep him free of anti-coagulants but also had to pump him full of pro-clotting medications. If you've followed the blog much over the last few months you know that the management of his clots and the resultant strokes have had us spitting venom on numerous occasions, but this time around we had to suck it up as there was a very real threat that he could bleed to death in the OR if he wasn't allowed to clot. So we were obviously a bit frantic to see him move after the fact. With the presentation of a small pink sponge soaked in sterile water Ford's eyes widened and he reached out to grab it. Not only does he seem to recognize and remember the sponge, he seemed anxious to self-soothe.

You have to understand that we are used to him spending days in an unconscious and paralyzed state post-op. So to see him reaching out to us and sucking vigorously on his soother less than a handful of hours after having his heart replaced is more than a little stunning. It not only confirms that his brain has suffered little-to-no immediate trauma but that he is feeling surprisingly well. His recovery at the 12 hour mark was being described by the staff as remarkable, unexpected, amazing, and free of any complication - which is a world of difference from the usually sedate and underwhelming predictions of the doctors who were counseling us just yesterday on the acute risk of death that Ford was facing going into this, given his history, and that while the odds might not have been in his favor the operation was still "worth trying" because it was his "only chance".

There is a lot more to tell, but I need to sleep. There are numerous unresolved issues that still plague him, and the first 72 hours are quite serious in terms of acute rejection. We know that the heart Ford got was an ABO mismatch (he is A-pos, it is B-something-or-other) and that the last round of blood testing confirmed Ford had already developed B antibodies -which means his body would be actively mounting an attack on the organ. Since they know this they are aggressively working to keep his immune system down and he is getting additional and larger doses of anti-rejection medications than he would have received if the donor heart had matched his blood type. So the picture could still change quite quickly for the worse. But all things considered I feel a sense of hope and an elation that I haven't felt around him in months. He really does look amazing.

Gratitude as well to Marni, for book-ending the experience of today with the delivery of a generous and tasty dinner and a ride home for showers. Christa's returned to the hospital to keep watch over Ford through the night and I'll trade off with her in the morning.

Go Ford Go!