The vigil continues

Ford's sedation was turned off yesterday, to give his body a chance to show signs of life. He very quickly started to breathe on his own and we occasionally see his eyes twitching and feel his limbs move and flex. It's still too early to tell if it's intentional motion or just postural reflex. His blood pressure rises in response to stimulation - moving, pinching, etc - he coughs when he's suctioned and his pupils are sluggishly reactive to light. All of this shows a basic level of brain function but says little about the potential return of his consciousness or personality. Predictions are still hazy, mostly shrugs and wait-and-sees, but those are matched by the slow trickle of staff coming around to say goodbye to Ford without really saying goodbye.

Last night the nurse switched his crib for an adult sized bed so one of us could climb in and lay next to him. We haven't left his side much since Wednesday and are now going to be able to sleep with him at night instead of leaning uncomfortably on the crib rails, trying unsuccessfully to doze. We talk to him all the time and have been passing on your comments, telling him about all the people who are with him in spirit. We really appreciate hearing from so many of you over the last few days.

Things will probably continue like this over the weekend while we account each day for any signs of recovery and chart them against the overall poorness of his condition. Still, as before, there isn't a lot of hope and we are both being briefed, and bracing, for the inevitable "decision" that will have us moving through the exact same circumstances we had to endure with Emmett's death 4 years ago. It was hard enough the first time, I can't believe we're about to do it again.

...

Ford is dying.

The bleeding in his head hasn't stopped, despite the neurosurgeons best efforts. It could take a few hours or a few days - no one's really sure - but we have officially entered the death watch.

Ps

Ford has pulled some pretty crazy stunts before and lived to tell the tale. He just might surprise us again.

ohh no...

Ford has suffered a massive brain hemorrhage. He was taken to the OR around 3:30am so neurosurgery could remove a piece of his skull to suck out the blood. The surgeon described it as the worst bleed he's ever seen. At the moment no one has any idea how or why this happened. All day yesterday Ford was really sick, but all the symptoms pointed to infection and the doctors weren't much concerned beyond making sure he was on broad spectrum antibiotics. This is a huge surprise and a huge problem. As usual, they are are reluctant to speculate on how much function Ford has lost, but the surgeon suggested there would be significant damage to the right side of Ford's brain. When we pointed out to him that Ford had also suffered a massive stroke to the left side of his brain he seemed more than a little dissappointed and said: ...We'll see.

Ford survived the operation and is stable in the CCCU, which is one hurdle crossed - they really didn't have much hope that he would last the night. He's just gone down for a CT scan so they can track the bleed and see if it's gotten any worse since they drained it. If it has the surgeon has told us that they will not operate again an that will be that for Ford.

But even if it hasn't gotten any worse there is still a significant chance that Ford has reached the end of his line. We might not know for weeks how much of his brain has been damaged or how functional he will be. Since he's ventilated he can be kept "alive" pretty well indefinitely, given his other organs hold their own, but it's unclear if he still has the capacity to breathe on his own anymore.

More wait and see, but the picture's looking pretty fucking dim right now.

The inevitable comedown - a mixed bag

Ford was reintubated this morning.

While his breathing wasn't getting markedly worse his daily x-rays showed almost total left lung collapse. This time the decision to put him back on the ventilator wasn't to help him breathe so much as inflate the collapsed area to prevent infection. If you recall, over the last 6 months Ford has frequently suffered from pneumonia because the sticky, fluid-laden sections of his lung are attractive to bacteria. With his immune system repressed to keep his body from rejecting his heart the doctors are anxious to keep him clear of any potential infection - which will hit him much harder now than in the past (and it was bad enough then, if you remember).

While we understand the risk/benefit balance here we're still pretty upset to see him back on the ventilator. He was just starting to vocalize again and hearing him laugh and cry was unbelievably uplifting.

So where do we go from here?

The short term plan is to keep him intubated for the week and recruit the left lung enough to give extubation a second try. The hope is that we just jumped gun this weekend and given a few more days with his new heart Ford's body might be able to adjust. But we've been in this boat before - for most of the year, in fact. So the hurry-up-and-wait scenario has lost a lot of its lustre. Then again, the other options involve surgeries and are pretty invasive. So wait and see is the easy choice.

Despite the changes Ford seems to be holding his own. Not only does he treat the breathing tube as though it's not even there, he spent the day wide awake and full of smiles - happily kicking his legs and playing with our faces, even sitting up in my lap for an hour, enraptured with the new perspective on the comings and goings in this room. It's clear he really doesn't know or care about what we feel he's missing, as long as there is someone around to pat his bum and talk to him - and his simple joy in the world is remarkable to experience in situations like these.

So we are looking at another month of ups and downs as they try to wean him off his ventilator dependency. The estimate is mid-July, and if nothing has resolved or changed by then we will revisit the surgical options. One is putting in a tracheotomy, which is a breathing tube in his neck that bypasses his nose/mouth and is a much more stable long-term option for keeping his lung inflated. The other is stenting open his left airway, which is still experiencing a mild amount of compression despite the transplant and, however unlikely, might be enough of an impediment to allow for the collapse.

The Weekend

Here's Ford enjoying story time with our friend Christine, Friday morning.

By the end of the week Ford was almost back to his cheery old self. We still hadn't got any smiles out of him but there was a definite twinkle in his eye on Friday as he enjoyed the relative comfort of his old CCCU routine.

They ended up delaying Ford's extubation until Saturday morning because an ominous x-ray showed his left lung was almost completely collapsed and swamped in fluid. Nobody was expecting a miraculous lung recovery, even though the transplant greatly reduced the compression that his old swollen heart had been applying to his airways, but it was still a little disheartening to hear that his left lung has slowly been getting worse since the operation and is now back to its dirty old tricks. So they decided to give him another day of rest and diruetics (to try and draw out some of the accumulated fluid) and then went ahead and pulled the tube. Ready or not!

This is Ford about 30 seconds after they extubated him - a rather unceremonious event considering the length of his intubation (4+ months) and his lack of practice at breathing. I wasn't able to capture the look on his face in those first few minutes but he was definitely thinking something along the lines of: WTF!? Then he decided to give us all a run for our money and quit breathing, which sparked a flurry of panicked activity as they prepared to reintubate and call the whole thing off. But with the swift intervention of bum pats and a couple soothing doses of aromatic, vaporized adrenaline (Yup, that's right: vaporized adrenaline), we managed to coax him back among the living. Then they put him on a Cpap mask, which is probably one of his least favourite ICU toys and sedated him to ease the transition.

Here he is sporting the mask, his soother, his pacing wires, and his new scars - our sweet little post-human steampunk


On Friday Christa and I were granted a meeting with the pathologists who will be dissecting Ford's old heart and analyzing it for the record books. Prompted by a family we met in Edmonton who's daughter had her transplant a few months ago I had asked around for the opportunity to see Ford's old heart after the transplant. I assumed it was a normal request and was surprised to learn that we were the only ones who've asked in recent years and no one could remember if there was any particular protocol that had to be observed. It took a few days, but eventually we got the green light. Since nothing is sacred to me, I'm going to share some of the photos we took so you can also have the chance to see what Ford's bum heart looks like.

Click the links below if you're not feeling squeamish or feint of heart, hehe:

Heart 1

Heart 2

Heart 3

Heart 4

I have to say the experience was a little underwhelming, but that's because I was anticipating some serious gore. I wasn't prepared for how small, tidy and compact it was. Still (and I suppose this goes without saying), holding Ford's heart in our hands was incredible and I will never forget the moment. We were given a pretty comprehensive anatomy lesson by the pathologist, who seemed thrilled to have the chance to walk us through this part of his job, and were able to see much of what was wrong with it, including some of the sutures and shunts from his previous surgeries. Amazing!

Ford continues to do really well. He seems to be adjusting to the Cpap and was apparently smiling and laughing for Christa this afternoon. It's amazing how quickly things are changing now, despite the trouble with his lungs.

Day 5... 6?

It's almost been a week and already the days are starting to blur together with the sameness of stability. Although, that's not entirely true. While Ford remains well and his recovery continues to astound doctors with its relatively uncomplicated course, things are definitely changing. Ford is quickly losing lines and medications and will very soon be back to the tube-free baby we got to know in January. I'm sorry that we don't have an updated picture to show you, but if you look back to the one we posted immediately post transplant and subtract all the stuff poking out of his chest you will see what we see now. And tomorrow we pull out the big guns as Ford goes for a trial extubation. Fingers crossed doubly, in white-knuckled and purple-lipped empathy for little boy-no-longer-blue as he attempts to breathe on his own for the first time in 4 months.

And If that all goes well? We'll be getting shipped up to the intolerable limbo of the ward, hopefully for as little time as possible, to buffer Ford's discharged to our new Toronto home and our summer of park-walking-picnic-lazing-in-patient-less-hyphenation-extending-bliss.

We are very grateful for Ford's Nana Rhonda driving up from New Jersey amidst her flurry of moving house to spend a few days sitting with him, while treating us to leisurely sleep-ins and mushroom pithivier. As well as for the recent arrival of The Trolls, who tolerate my flirtations with gourmet cooking with wine-soaked grace and good humour, and help keep both Christa and I firmly and sanely rooted to Terra Firma with their generous and expansive perspective on things.

Go Ford Go!