The End

Ford Riley Lakowski Couture
May 12, 2009 - July 5, 2010








*

A long and drawn out sigh

We had come to a tentative, collective decision to take Ford off the ventilator today if he failed to show any signs of clinical improvement. To give him the benefit of the doubt they had decided to try him off his phenobarbital, just in case it was contributing to his sleepiness, and run him through a third CT scan to check the bleeding. We were told that a neurologist would come by and speak to us about the results of the CT scan, as well as conduct one more clinical examination before we would be approached by the intensivists about the next step.

We waited all day on pins an needles (a gargantuan understatement) until 4:30 before we got any sort of news.

The bleed seems to be finally resolving and Ford has reached "peak edema" (the maximum anticipated swelling in his brain 72 hours post-hemorrhage). Based on the pictures the neurologist explained that Ford's frontal and temporal lobes remained free of any apparent damage. Most of the blood had accumulated around his occipital and parietal lobes. What does this mean? Well, not a whole lot at this point, although she did suggest that it was good news he hadn't sustained any significant damage to his frontal lobe - which is responsible for higher level function and consciousness. It's hard to differentiate on a CT scan areas of infarct (permanent damage to brain tissue) and areas that have just accumulated fluid which will eventually reabsorb without a lasting effect. Her recommendation was that Ford go for an MRI later in the week which will give the best possible picture of how much of his brain remains functional.

Additionally, during her assessment of Ford, we witnessed a remarkable level of response that culminated in him getting so pissed off at all her poking and pinching that he woke up crying.


...


It's hard to describe what that moment was like, with half a dozen of us (nurses, fellows, Christa, me) crowded around his bed, fully anticipating and accepting his imminent death only to be each counseled in turn by this owl-eyed brain doctor that Ford was showing a stunning amount of intention and conscious reaction considering the magnitude of the hemorrhage and the current level of swelling in his head. She believes we will continue to see signs of improvement as the swelling begins to subside and that Ford might not be as badly damaged as everyone believed. I don't think there was one of us standing there who's jaw had not slackened to the floor.

Now before you all drop to your knees in thanks, or continue railing at the gates of some Almighty for compassion and benevolence, pleaseunderstand that Ford's hold on life is still incredibly tenuous and this turn of events is in many ways the worst case scenario.

It's not that we haven't spent the last few hours crying and hugging Ford in disbelief, our hearts swelling with unparalleled love for his tenacious perseverance and his dog-headed stubbornness in the face of death, it's that this is not the fairy tale miracle that people seemed to be hoping for. Ford's brain has been severely damaged, he has suffered two strokes and a massive bleed. Additionally his body is riddled with crippling disabilities and palliative patches. Rather than guarantee us an inevitable discharge and return to healthy, happy family life, this latest recovery means our long haul in the hospital is now more than ever far from over. It means potentially months more time in the ICU and, as we've become painful witnesses to over the last 1o months, that does not come without its cost.

I thought this was it - that there was no way that he could endure yet another massive insult. But once more we are limping back into a sustainable limbo and instead of feeling hopeful I am left bracing for the next traumatic event that may-or-may-not bring the end.

He may very well be the strongest baby in the world but I am nowhere near the strongest father.

I had said goodbye to Ford.

His resurrection at the hands of the neurologist has not brought him back to me, haloed and glowing with radiant energy. She has merely, ruthlessly, prolonged the hesitant and ghostly presence of the living dead - bartering the horror that I experience looking at him now with some vague diagnosis of "possible quality of life."

Last Monday, on my way home from the hospital, I watched a man standing next to me on the subway station platform commit suicide by diving off into the headlights of an arriving train. I watched his bag explode into a cloud of loose papers and his body disappear under the wheels. Two days later, after beating the odds and recovering from a heart transplant, my son's head imploded and he drifted towards death in a coma. Now again, against all odds, he's in some hazy wakened state, clawing inarticulately at the air and staring around the room with eyes that might not actually see anything. I feel like I'm rolling and flailing underwater, caught beneath some tremendous riptide and I can only surface from one nightmare into the next. I really don't know how much longer Christa and I can live like this before what remains of us, like Ford, fails to stand up against anyone's concept of a meaningful existence.

But we're going to stick by his side and hold his hand and help him through whatever is left of his life because we can't stop loving him in spite of all this agony. And we're going to do it alone because we can't handle having anyone near us at the moment - our heads are bursting with the pressure of coping and we have no resources left to share.

PLEASE! At least for the time being, refrain from posting any more comments about how you're praying for miracles. The ICU is as close a space to the raw, disgusting, physicality of life as you can get. Between Ford's scarred and bleeding body and the crowded network of machines that loom around him there is very little space for grace and spiritual healing. We are barely hanging on right now and that kind of sentiment just feels like a knife in the back.

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!

Day 3

The slow post-op process of taking things away has begun...

Today:

• the epinephrine was turned off and his pressures held their own;
• the morphine was reduced from 60 to 40 mEq/kg/hr and when he woke up for a few minutes this evening, he was a bit more alert thanks to it;
• the isoproterenol was turned from .04 to .03 mEq/kg/hr and will continue to be weaned as long as his heart rate stays above 120bpm;
• the peripheral IV in his left foot came out so all 10 ten toes are available to be tickled;
• the NIRS (that crazy headband on his forehead that measures his brain's oxygen saturation) came off.

Phew!

Lots more to go... Enjoying the small steps in the right direction...

Post Transplant Day 2

Day 2 was pretty low key. Ford has started to accumulate fluid and is looking a little more swollen today than yesterday. They've upped his morphine to combat his being awake, which was starting to get pretty uncomfortable for him. His epinephrine is being weaned down and his heart rate and blood pressures are tolerating it fine.

Prior to his having the operation the doctors were planning to piggyback two other procedures onto the transplant. The first was to re-plicate his left diaphragm, which had come undone for the 2nd time. But when the surgeon was looking at it in the OR he decided he couldn't risk it . The abundance of scarring from previous operations had fused the lung to the surrounding tissue and muscle, making the delicate process of cutting the lung away so they could fold his diaphragm back down out of the way unnecessarily dangerous (accidentally cutting the lung would mean big problems). It's also unclear how much of an issue his paralyzed diaphragm will be now. With Ford's old compromised circulation and poor heart function any impediment to his breathing provoked big problems, but now that he has a normally functioning heart those problems might just resolve on their own. So we are going to wait and see.

The second procedure was to ligate the major lymphatic duct that runs through his pleural cavity, essentially tying off a leaky pipe in his chest that was maybe the primary cause of his persistent chylothorax. But that also looked risky, and seeing as they were already worried about excessive bleeding they decided not to poke and stab at anything else. We weren't even sure if that was the source of the problem anyway. A competing theory as to why Ford isn't recovering from the chylothorax is that his venous back pressure was extremely high as a result of all the modifications to his single ventricle circulation:

His half-heart was overtaxed and stressed and was only able to pump his blood weakly and sluggishly. Because his blood was moving without much force his lungs were being poorly perfused and were prone to collapse, so they needed to intubate him and assist his breathing mechanically. But then the ventilator was supplying a constant, external, positive pressure into his lungs - to keep them inflated and oxygenated - and the weak pump of his heart was consequently doubly compromised from pushing blood through his pulmonary arteries because of the constant air pressure that was forcing fluid back - a classic hypo-plast catch 22. The result was that his blood was constantly backing up throughout his body creating an exceptionally high CVP (or central venous pressure), which in turn backed up into his lymphatic system. If you have a weak, thin pipe that is consistently stressed with excessive internal pressures it is going to burst and leak, and if the pressure isn't able to resolve the leak will just continue unabated. Again, the hope now is that with his normal circulation that pressure has been relieved and his vessels will be able to heal naturally and the chylothorax will disappear. More wait and see.

He continues to do "really well" and everyone seems thrilled.

Post-Transplant Day 1

I guess if you haven't lived in an ICU for the better part of year, hearing someone say "he looks so great" when they show you a picture like this might seem more than a little strange. So trust us if you can't believe your eyes, he really does look very good here.

And pink! We used to color correct our photos in photoshop or apply warming filters to the camera before we took pictures, to help make him look a little less like the living dead. But not anymore! That peachy goodness is 100% natural! To the extent that having a heart transplant is natural...

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!

...so far

Ford has just come back from the OR with his new heart and it appears to be doing its job. Still alot of unknowns that will be unfolding over the next several days, but so far so good. We are about to go into the CCCU to see him.

NOW

a heart came for Ford today. he went into the OR at 8:30pm, surgery will be 6-10 hours.

we'll keep you posted.

please send half of all the love and strength you can muster to Ford, and the other half to the family of the baby who had this heart first.

Party Time

Ford's birthday was a good day. The staff broke the "no more than 2 visitors at the bedside at a time" and "no food or drink" rules for us. It was a downright hootenanny with 3 or 4 people at a time AND bottled water!

Ford unfortunately woke up rather fluid heavy so wasn't looking exactly his best for the party, but we got him into some clothes for the first time in 4 months and fluffed up his hair especially:
He got lots of presents:
Including lots of awesome homemade-ness:

We ate the hospital-made cake with surely needless punctuation that the child life department brought us:
Ford got to have cuddles with both Nana Rhonda and Grandma Corinne:
He enjoyed his birthday balloon:Visits with friends:
And family:
And it was all made possible by having two of his/our favourite nurses, Lauren (left) during the day and Maryanne (right) in the evening:

Yay!

Happy Birthday Ford

Dear Ford,

Today you are one year old!

We love you. We love everything about you with everything we are.

You are the best thing that ever happened to us.

XXOO
Mom and Dad

Head F**k

Do we complain too much? I feel sometimes like we need to suck it up and stick to posting photos of shiny, happy Ford, with comments like: He's had a rough week but our little trooper keeps on trucking!

But seeing as you're not around yet to answer one way or the other... here we go again!

I'm not sure I can trust that a week has past since we last updated the blog, it feels like a few hours at most. Though, our heads have been reeling from a series of near KO's delivered in rapid succession and you'd be better off being more suspicious of our current vertiginous perspective on things than the unlikely collapse of the time continuum.

It sort of feels like the parable of David and Goliath, only backwards - fitfully spun around - wherein David taps Goliath on the shoulder "Ahem, I believe you are recklessly endangering the lives of my family" and Goliath swiftly bashes in David's skull before moving on without a second look back at the twitching pulp of a person he just did in.

Am I being overly dramatic? You betcha. Nevertheless.

I arrived at the hospital early Monday morning and quickly unleashed my fury on anyone who foolishly took the time to ask me how we were doing. Since our two main point people (the transplant social worker and the CCCU's nurse practitioner) were both off duty this week my rage quickly took on the tactics of a flailing, panicked herd animal and by the end of the day news of the distempered parents in the back corner had spread unreliably up through the ranks. But my anger quickly fizzled in the face of the inevitable staff rotation. Ford now has, as of Monday, a brand new crew of doctors and fellows who will be following him until July. Doctors and fellows who have had the benefit of taking from their first impressions that we are hard-nosed and obsessively needy parents who expect every one of Ford's farts to be examined and considered as a contributing factor in his illness. They have so far been exceptionally kind and considerate and we have toyed with the thought that they might actually be forthcoming, open and honest with us about how much they value our presence on the ward. Still, on Tuesday we were suddenly moved out of the room we had shared with 3 other families to a large, private isolation room with two big windows and a TV - 6-figure accommodations in an ICU. Am I being unnecessarily wry in assuming that our cries of malpractice trumped Ford's 4 month old ARO infection in factoring how quickly we got quarantined? Maybe. Maybe not. But the timing is suspicious.

We spoke at length with the transplant nurse, who made quick work of distancing herself and the transplant team from having any responsibility or control over the events that had transpired. Still, she said, how about I arrange a meeting with the transplant team so we can sit down and catch up on Ford. You know, touch base, chit-chat. Just so you can know that we're still around and that we're still thinking a lot about Ford.

After meeting with the CCCU's charge nurse, it was also suggested that we have a comprehensive meeting from the critical care side of things to make sure we're all on the same page about what Ford's current issues are and that we all understand how the events of the last few weeks contribute to the big picture.

So far so good. Progress.

Then, after venting and explaining our concerns with the CCCU's social worker we had an impromptu meeting with the ward's senior intensivist. It was a calm and level headed recap of everything that happened, but still I left it feeling like I had been chastised for my irrational behaviour, slapped on the wrist for assuming I had any diagnostic prowess beyond 20/20 hindsight, applauded for my parental gut-instinct, and insulted for thinking the physicians in Vancouver, who had initial suggested Ford had a propensity to clot, but failed to provide any "scientific evidence" of a known disorder, were making anything but a reckless and undereducated guess at how to treat Ford with anti-coagulants. He applauded his staff and patted himself on the back for running an amazing ward, offered that he would tell his fellows to be a little nicer to us in the future, and rounded it off by saying that from his perspective no mistakes were made and that they had always been acting in Ford's best interest. And the kicker: Now that Ford had shown them that he had a propensity to clot they would begin to take it seriously and would reconsider withholding doses of his anti-coagulants. Same old bullshit. KO #1.

Yesterday we met with the transplant team, eager for an optimistic pick-me-up (as has thus far been typical of our meetings with them). Ford is still listed, we know that, and despite the last few weeks he'll still be a little superstar post-transplant. Ah, but not so. KO #2 comes from the lovely Dr. Dipchand, who after a two month hiatus has returned to our lives to deliver this lovely bomb: While Ford is still currently a candidate for transplant, the events of the last two weeks in addition to his course over the last 6 months put him at a much higher risk for post-op morbidity as well as significantly reduced quality of life. Whereas in December they anticipated his chances of surviving the procedure to be 90%, he has now entered a "gray area" and his chances are more like 50%. His chronic lung issues, which now include the need to re-plicate his diaphragm for the 3rd time, are not necessarily going to resolve with a new, smaller and fully functional heart. His clotting issues, which might be symptomatic of an underlying genetic disorder, and his chylothorax, who's return has been more surprising and troubling to the doctor's here than we were led to believe at first, are both serious complicating factors for Ford. She went on to cite (inaccurately, I add in his defense) that Ford has failed to show any signs of development over the last 6 months and that this, assuming his other complications fail to resolve with a new heart, will be a severely limiting factor in his quality of life -. ie., he might never learn to walk or talk. She felt it was time to reintroduce us to the option of compassionate (palliative) care. It could be an amazing time for us, to know that we weren't going to subject Ford to more damaging surgeries or invasive procedures, that they would manage his pain and his ventilation for as long as it took for "nature" (or some grossly mutated biomechanical hybrid of nature) to take it's course. We could take Ford home, get a portable ventilator for him, put in a tracheostomy to make his breathing a little less intrusive, continue with his maintenance drugs and just live with him until his heart gave out.

That was it. End of meeting. And we returned to Ford's bedside in tears, where we met our little saccharine son who promptly twisted the knife in our own hearts by reaching out to us with both arms, smiling when he saw us coming (a recent developmental milestone for him, so fuck you very much, Doctor).

We both feel hollowed out, disoriented and delusional.

We had a meeting today with the critical care staff, a larger, longer and less depressing meeting, that spoke frankly of Ford's current issues and how concerning they are, but emphasizing that they are still unknowns and that Ford could still recover from the transplant. We got the chance to ask more detailed questions about the challenges he faces and were given comprehensive and reasonable estimates that I'll spare you all here. Ford's physiotherapists were included in this meeting and we had a chance to talk long-term with them (which is something we'd never thought to do before). They agreed that Dr. Dipchand was wrong in suggesting Ford had made no progress in the last few months but emphasized that he still faced considerable obstacles developmentally. His estimates were surprising. If all of Ford's current issues were to resolve with transplant and he was put onto an optimal recovery course, they wouldn't expect to see him walking until he was about five years old, and that he would probably have life-long deficiencies with "independent ambulation." Since it is likely that Ford will not recover optimally he will face additional hurdles and might plateau developmentally sooner than anticipated. Then they also brought up palliative care, wanting to impress on us that it isn't as simple as "pulling the plug" (which was the expression I used when referencing our first son, Emmett), and that Ford might live for years in a state much similar to the one he's in now, but modified so that we can keep him with us at home.

I know I've mentioned it before, how we are painfully but still only, out of necessity, peripherally aware that the odds are slowly stacking up against Ford the longer we hang in this horrible limbo. The more we try new things and invariable watch them fail. But it was still unbelievably stunning to move through the last two days of briefings and get this updated picture of his frailty. I just can't reconcile how bad they feel things have gotten with how amazingly interactive and happy our baby has become.

This afternoon the "bereavement nurse" came to make molds of Ford's hands and feet. She was chipper and encouraging, but I couldn't get past her job title. To be fair we had asked to have the molds made a while ago, before we had a sense of how dire things were getting, and it was just coincidence that she turned up today to do it. It brought back haunting memories of the cast we made of Emmett's feet as she talked frankly and cheerfully about how important these mementos are for parents who know that their children are dying and that it was good that we were doing it. Adding as a swift afterthought ...even though Ford isn't technically dying.

She had no idea that we'd just spent the last two days inundated with serious talk about this place called a "gray area" that we had unwittingly stumbled into, or that we were saturated with thoughts of holding Ford like we held Emmett - feeling his body stiffen and it's temperature drop. That I was ferociously trying to reconcile the most poignant phrase of Emmett's autopsy report - Eyes: Unremarkable - with this squirming little boy who was pleading at me with anything but unremarkable eyes for the nurse to stop squishing his hands into warm, pink bowls of alginate. And then suddenly imagining him laying in bed for years, unable to vocalize or lift his head, or sit up, or do anything other than look at us and reach out excitedly, paw at our faces and pull on our hair while his legs kick enthusiastically. Expressing this simple gratitude for us, the architects of his life and death, drawing it up from some strange and unknowable corner of his self.

The worst piece of news we've had in a while?

In some ways, yes.

Ford had his MRI today, much to the chagrin of the CCCU fellow, who was still muttering comments about how useless the scan would be as they were wheeling Ford out the door. As per neurology's request a "proper cardiac anesthetist" was called to assist (until now we didn't even know there were "proper cardiac anesthetists" and I'm wondering who the hell was doing the job last time... the janitor anesthetist?) and Ford had no problems with his heart stopping or his blood pressure disappearing. Phew.

He made a quick recovery from the sedation and was back to his happy playful self within a few hours.

Neurology came by later in the day and confirmed that yes, Ford has suffered a second stroke, this time on the right side of his brain, probably caused by a wayward clot sometime over the last few weeks. Their assessment was that this must be responsible for the weakness in his left leg but that no new damage was occurring and Ford wasn't in any immediate danger.

Similar to last time there isn't much they can do after-the-fact, other than ensure he remains on anti-coagulants. The good news is that this recent event is nowhere near as big as the first stroke and that Ford's leg, which seems to be the only limb affected, is already starting to recover.

The bad news is that we now have pretty solid evidence that the doctors looking after Ford are the scum of the earth, that they are not only dismissive jerks, but reckless undereducated assholes too. Christa and I have been stamping in circles around our living room, trading and rehearsing verbal tirades to unleash come Monday. We are sick to our stomachs with the bullshit we've had to deal with this last week and, while we're not sure what can be done about it, somebody is going to have to deal with two very hysterical parents.

Longest blog yet?

The last two weeks have been rough, as previously described, but Ford has made steady progress back to a stable, happy middle ground. He still has his chest tube in, which we were surprised to realize yesterday has been in for two weeks now, and it still continues to drain. Early in the drainage process they sent samples of the fluid to test for infections, etc, and the results came back showing the presence of chylomicrons, which suggests another (or maybe the same, gone unhealed and unnoticed until now) chylothorax, this time around his right lung. Some of you might remember that he was first afflicted with this in September after his 'Glenn' surgery and that they drained and treated it. Then it was rediscovered in November when they were operating on him for his BT shunt, again it was drained and treated. This third time is more annoying than upsetting as the treatment for it is to strip his diet of fat (or more specifically, long chain triglycerides) for 6 weeks and feed him this disgusting, sticky, stinky formula called Portagen.

For your viewing pleasure here is a list of ingredients in Portagen:
Maize syrup solids, medium chain triglycerides (fractionated coconut oil), sodium caseinate, sugar (sucrose), maize oil, calcium citrate, potassium chloride, dibasic magnesium phosphate, dibasic calcium phosphate, potassium citrate, lecithin, vitamins (vitamin A palmitate, ergocalciferol, de-alphatocopheryl acetate, sodium ascorbate, folic acid, thiamine hydrochloride, riboflavine, nicotinamide, pyridoxine hydrochloride, cyanocobalamin, biotin, calcium pantothenate, phytonadione and choline chloride) and trace minerals (ferrous sulphate, cupric sulphate, zinc sulphate, manganese sulphate, and sodium iodide

No doubt it's all from local, organic sources and is farmed to the strictest of ethical practices.
Actually, when I think about it the first three ingredients are corn syrup, coconut oil and sugar, so it's really just like guzzling the dregs of milk from a bowl that was previously filled with Froot Loops or Frosted Flakes - a necessary childhood rite of passage. Only for Ford it gets pumped slowly through a hole in his belly straight into his intestines. Ah, the miracles of modern medicine

All joking aside, the current crop of cardiac critical care fellows who have been following/"treating" Ford since his MRI two weeks ago could easily be described as Portagen personified, stripped as they are of all wholesome goodness, processed into a greasy, nauseating puddle of post-cereal effluent that, while it might look impressive on paper, is liable to cause cancer before nourishment.

We don't like them one bit and neither should you. Because, joking aside for real this time, they seem to be woefully incompetent, arrogant pricks who have repeatedly ignored our observations of Ford's behaviour, our suggestions - based on previous teams of doctors decisions in similar circumstances, and our quite vocal protests and frustrated pleas that they reconsider their plans for him.

A brief, descriptive aside: Ford is currently on ARO isolation, which means he has been in contact with a bacteria that is resistant to conventional antibiotics. It is one of those lovely bugs that are the bane of hospitals everywhere but that only exist and get contracted in hospitals. The measures to contain an ARO (anti-biotic resistant organism) are patient isolation and gowns/gloves/masks for anyone who comes into contact with him. But there are no proper isolation rooms available for Ford right now. So the snuffly ward administrators, eager to comply with policy and present a good front during 'safety rounds' have placed a line of tape along the floor about 5 feet from his bed demarcating entry into the ARO zone and the need to suit-up. I marvel at the intelligence of this particular organism that Ford is hosting, that it would politely respect their 'pretend barrier' and sit tight, safely contained on the control side... but meanwhile, the doctors are clearly having a field day, enjoying the opportunity to discuss their patient from a comfortable, unobservable distance, muttering careless recommendations just out of earshot from us, the hysterical parents, who are standing next to Ford invariably trying to soothe or play with him, reluctant to leave him unattended for the privilege of saddling up next to this circle of elites to stroke our chins and exchange thoughtful nods at the utterance of archaic, decasyllabic descriptors for things like 'legs'. It is really nothing more than my issue with bedside-manners, but the lack of respect they exhibit with their unwillingness to throw on a gown and walk up to actually look at their patient, in addition to offering the family a chance to hear what it is they're suggesting, drives me absolutely nuts.

Ok, back to the narrative thread. This recent outburst on my part goes back to a discussion at rounds prior to his chest-tube insertion where they ordered Ford's enoxaparin (his anti-coagulation medicine) be held in advance of the procedure. It is a logical step, to hold the blood thinners before you cut the patient, so that the patient doesn't bleed to death because their blood can't clot. Simple. But, because our lovely baby is so screwed up and his blood is currently more like playdoh than blood, it was previously ordered that his enoxaparin never get held, even in lieu of an operation, because the risk that he would clot outweighed the risk of him bleeding. This recommendation, which came from the team in Vancouver after both of Ford's internal jugular veins clotted and he nearly died, stated that Ford was a unique and curious example of a child who was developing blood clots while maintained on a supra-therapeutic level of anti-coagulants. In the emergency that ensued there were numerous in-depth investigations by hematology to try and get to the bottom of why this was happening to him. But then we were transferred back to Toronto and, as per usual, the folks here decided to disregard all of the advice and evidence that Vancouver had gathered on Ford's behalf.

So. What's the problem now?

The problem now is that last weekend we noticed Ford suddenly stop moving his left leg. It was dramatic. When he is happy or mad his legs kick with an equally vigorous fury and suddenly only his right leg was kicking. We panicked. He's had a stroke, we said. This is just like what happened after his last stroke, he stopped moving the right side of his body. The aforementioned fellows' response? No, it's not a stroke. There are no other symptoms. He hasn't been lethargic, irritated, he's still moving his left arm, he is still alert and focusing on things, we haven't seen any seizures, we don't want to send him for another MRI he didn't do well after the last one, he has an IV line in his left leg which must be irritating a nerve, maybe he's dislocated his hip - and the last one, which is the kicker: He's just tired... and lazy. They blew us off big time. But, we argued, he has in fact been lethargic and irritable, all last week he was pretty sick but we were all thinking that was septic shock, not stroke. You held several doses of his enoxaparin, and as we've explained, he's at serious risk for clotting. Our concerns were repeatedly brushed aside. They kept us mildly placated for the week as they investigated every possible cause for the weakness other than stroke, but we persisted in our request for an actual neurologist to come and look at him.

So yesterday, FINALLY, who should come strolling through the door (during CCCU rounds at Ford's bedside no less) than a team of neurologists, robed in white coats, clutching reflex-batons to their chests like regal staves or wizard's wands. They swooped in past the rounding fellows, who were no doubt incensed at the intrusion, and clustered around Ford's bed to examine him. We are from neurology, they said, and each one lined up to shake our hand before turning to the silent, slack-jawed fellows: who is this boy's doctor? Then they proceeded to barrage the particularly loathsome doctor who is currently assigned to Ford (whose name I fittingly do not know) with rapid-fire questions about his medical history, prompting her to stagger and stumble over a response before admitting: You know what, I'm sorry, I really don't know anything about him. I haven't read his chart yet.

Victory! to be generous, validation to be sure, as they turned to us to get their answers and then, after listening to what we had to say- Neurologist (N): This boy has had another stroke and we need to image his brain to find out how bad it was! And then the loathsome fellow (LF): But it's Friday, couldn't we do it early next week? (N) No! If it can't be done tomorrow then it has to be Sunday. (LF) But Ford didn't cope well with the sedation needed for his last MRI. (N) Don't you people have proper cardiac anesthetists? (LF) Well, yes... (N)Then page them and have them do it!

I'm not sure why I feel so elated relating this to you all, confirmation that Ford might have suffered another stroke would be the worst piece of news we've had in a while. Since it's affecting his left leg the infarction would be on the right side of his brain, which was until now the last bastion of pristine gray matter. The thought that Ford might be losing more cerebral real estate is gut-wrenching, but at the same time he seems to be recovering. His leg is moving more and more each day and he seems to be as happy as he's ever been, even smiling quietly to himself as he handles and looks at his books without our help, turning their pages and dropping them on his face.

Ford will be one year old on May 12th and when i think about that this last week feels particularly exhausting. Haven't we broken down enough in front of callous, disinterested, over-worked doctors? Haven't we already asserted ourselves and demanded what small measure of respect we're due for our capacity to understand and care for our sick baby? Haven't they paged Social Work and Spiritual Care enough already? We are tired of their placating back pats and patronizing smiles of reassurance. With each turn of the day, week, month, year, this institution clicks forward and a small catch somewhere releases a fresh flood of idealistic and hopeful, but ineffective and unwittingly abusive staff onto us who can't understand our skeptical and guarded attitude when faced with their rehearsed benevolence and self-congratulating altruism. It's not that we're trying to ungratefully dismiss everything that's been done for Ford, it's just that the longer this drags on the harder it gets to trade smiles with rosy-faced nurses wielding needles and arm restraints who chirp and coo: I know this really hurts. I know you don't like it. But trust us Ford, it's for your own good!

Thick blood, thin idiom

Over the weekend Ford had trended into what looked like a solid recovery from his post-MRI crash, so much so that by Sunday he seemed to be almost back to his chipper self - as evidenced by the following video:



We thought we should clarify that the episode he experienced after his MRI was not technically caused by the scan itself. It was a response to being handled, transported, sedated, and muscle relaxed, all of which needed to happen for the test to proceed smoothly, once again illuminating that beautiful catch-22 of the hospital. But I feel like attributing part of it, proudly, to our son's blossoming personality. Obviously he seems to like it best when he's comfortably nestled in his crib, left to laze about, suck on his sponge and ogle the nurses. But so much so that he has developed a ferocious will-to-leisure (props to his dear old dad), and he becomes so furiously indignant when nurses and doctors start to futz over him that he works himself up into dangerous tantrums. He starts fighting off their attempts to calm him down and, though it usually subsides quickly and harmlessly, occasionally gives us a run for our money. It would be funny to watch if it wasn't so damn scary. I have started to affectionately refer to him as my "little World Cup star" for his flamboyant displays of crocodile tears.

Nevertheless, his chest tube continued to drain the accumulated fluid in his pleural cavity and we assumed he was getting off the rocky road.

But early Monday morning we woke up to a call from the hospital letting us know that Ford's sats and blood pressure were dropping again and they had intervened with an infusion of Dopamine, which had so far helped to level him off. By the time we arrived at his bed he had started to deteriorate even more and they were systematically upping his supports. The rounding doctors decided he was exhibiting symptoms of septic shock and ordered a round of tests to find out for sure. They quickly started him on broad spectrum antibiotics, with the usual hope that by the time they got the results of the tests back they would already be well into treating the bug, and continued to deal with his faltering vitals - occasionally tossing us the oh-so-helpful "lets hope a heart comes soon" line.

As the day wore on he received several boluses of albumin (a blood product that helps raise pressure by increasing the volume of fluid in his veins), a full on blood transfusion to thicken his blood and combat his low hemoglobin (which helps raise his O2 saturation), additional infusions of Epinephrine and Vasopression (both of which constrict blood vessels and raise blood pressure), doses of some kind of corticosteroid (for exactly what I'm not too sure, but it did produce extremely dilated pupils, or "steroid eyes"), and arterial IV line (to get a constant measure of his fluctuating pressure), an ultrasound of his abdomen (which is extremely swollen and distended), several bags of ice packed tightly around his body (to combat soaring temperatures), and most importantly a near constant barrage of bum pats and head rubs for our poor, writhing baby, who spent the whole day shifting himself around his bed in obvious discomfort.

By the end of the day they had him stable enough to start pulling back on his inotropic support and Ford finally fell into some sort of exhausted sleep-like state. Christa, who had spent around 16 hours at his bedside that day, decided to call it a night and we too collapsed into our own exhausted sleep-like state, miles away from the hospital in our lonely mid-town pad.

Today was a little better, Ford even had the gall to smile at me when I got there in the morning - prompting the necessary parent-child exchange: Is this all a joke to you!? Do you realize what you're putting us through? Wipe that grin off your face! There were ups and downs. Ford quickly relapsed into his uncomfortable twisting and fussing, was tightly refusing any attempts to feed him a water soaked sponge (usually his favourite thing), but was again looking relatively OK by the end of the day. None of the tests they sent off have yet come back positive for any kind of blood infection, but they are still holding firm to the septic diagnosis.

Hopefully this too shall pass.

I feel like we're starting to wear that idiom a bit thin...

shit. fans. hitting. clean-up ensues.

after a couple of weeks, that were as lovely as possible considering the situation, Ford spent the past few days reminding us of how very sick he is. it's been a hard few days and we're worse for the wear.

oh the usual trauma and near death experiences - bleeds, blood clots, heated debates surrounding his enoxaparin, hypotension, bradycardia, being resuscitated with albumin but not being so far gone to need epinephrine (bonus!), "personality conflicts" with staff, oxygen sats tanking out, CO2 flying sky high, resp rate nearing 100....

some things normalize over time (like tubes up noses), some things don't (ie near death experiences).

amidst the above, Ford had an MRI of his head - the process of which triggered the 4th-6th items listed, and today, an insertion of a drainage tube into his chest to "tap" the pleural effusion that had been increasing over the past few days and causing the last 4 items mentioned.

in anticipation of the chest tube insertion, the CCU docs made the controversial decision to hold his morning enoxaparin dose - a subject that inspires great anxiety in me, and also triggered, over the past couple days, many tears.

uncharacteristically he's been asleep since wednesday morning. he can wake up - he does when you change his diaper, because he hates it when you change his diaper - but he won't bother to open his eyes and slips back into sleep as soon as you let him.

that said, poor little one was so swollen this morning from the "fluid push" yesterday he couldn't open his eyes even if he wanted to.

the chest tube insertion went very well. they were prepared for him to react as he did to the MRI (nearly dying), but he remained stable and 210mls came out of the tube straight away. and it's still coming. that's a lot of fluid for a little chest and it's been putting a lot of pressure on a little lung.

he should have some better days soon. already, with that much drained, his resps, CO2 and sats are trending back to safer ground.

some smiles a couple weeks ago

nick can always crack him up:

worth mentioning

it is noteworthy that ford has been totally weaned off sedation/pain management. they started by weaning his ativan and once rid of that, slowly decreased his morphine infusion down to nothing as well. depending on the nurse, he sometimes get a dose of ativan to help with his "re-tapes", and depending on his liver function, occasional tylenol to ease his fevers. otherwise - nothing!

nothing! (for pain. his lasix and milrinone infuse on).

perhaps remarkable says it better than noteworthy. everyone marvels at his sedation-free good humour, considering he is intubated through one nostril, and has an NG stuffed down the other. not to mention all the other drawbacks of life in the CCU.

but he smiles more these days than he ever has! if he's happy here, imagine how pleased he'll be when he gets to the other side of this...

so we find moments of happiness too. unfortunately for us, unlike ford, we know what we're missing. so we also have many moments of heartbreak, alone here at night, miles away from him.

here is some recent cuddle time with momma:
with pops (and fluid retention):
in his millieu:
and in other cute baby news, we had a recent visit, and closet inspection, from Rudi:

Evidence

Nom, Nom, Nom. I would bite your finger if only these damn sedatives would wear off...
Alternatively captioned: The Killer Baby of Caerbannog.




Still shot from our pitch to Warner Bros to have Ford replace Christian Bale in the next Batman film.




Ford's great-aunt Shawn, testing the myth that he might be a fictional, animatronic sculpture plucked from Ron Mueck's studio for the purpose of helping us pull off the worst fundraising scam ever. Ah, but yes. He's real.

did anyone else watch the 5th Estate last night?

sorry about the long-time-no-talk, but we've had little to report. the hours and weeks are hard to distinguish from the ones before or after as we repeat our daily routine from our apartment to Ford's bedside.

since we last spoke, he has worked his way up from being allowed an hour a day on his back, to now being able to spend the whole day on his back or side, and then overnight on his tummy. they perform the occasional bronchoscopy to recruit his left lung, though only for the purpose of staving off pneumonias. "we'll keep trying to wean the vent" is a thing of the past as all are resigned to the fact that Ford won't be able to be extubated until he has a new heart.

he continues to be febrile and living under the bair-hugger and bags of ice, and is now, though still in a pod of four beds, under isolation for an "ARO" - anti0biotic resistant organism - his long time resident pseudomonas virus. the virus lives in the vent, so gloves, gowns and masks will be required for all staff as long as he is intubated.

discovered yesterday, he additionally contracted "h flu", or haemophilus influenza, so today and yesterday have been pretty uncomfortable for the little sickie.

his fluid balance and diuretics continue to fluctuate up and down, and the swelling in his face follows... same old same old.

he has, otherwise, been doing as well as he could under the circumstances. mostly stable and relatively happy, he only occasionally gives us a worrying reminder of his fragility. in those moments we all hold our breath and cross our fingers until he finds his steady ground again and the doctors part with "hopefully a heart comes soon".

he smiles a lot these days at almost anyone who tries to elicit a grin, and, now that he can be on his back and see around him, is remembering how to reach and grab for his toys and books. we've both been able to "hold" him a couple times over the past few weeks - where he is placed on our laps in the rocking chair - and though it's not like really getting to pick him up and hold him to our chests in our arms as we desperately crave to, it's better than nothing.

we've been graced with many out of town visitors - the trolls returned from Ottawa for a weekend visit, nana Rhonda and grandpa Leo were just here from Ramsay NJ, aunt Shawn and cousin Amanda from Sarnia, and this week, also from fair Sarnia, Ford's grandma Ruth is coming to town.

Rhonda got the first pictures of Ford's teeth, so we'll try to get those and post them here. they are very cute additions to his little face.

enough about us, how are you?

small things

ah it is all perspective - he may look big in the photos but he is only in the 5th percentile for his age group. in november he'd managed to claw his way up to the 20th, with his sights on the 90th where he was born, but in the last couple of months has found his way back among the wee ones. HOWEVER, our wee boy, despite it all, in defiance of this stasis, and overnight, has sprouted two front teeth! teeth! wow! hopefully photographic evidence will follow soon...

two smiles

brief, but lovely, and hopefully identifiable:

"Normal" and "Classic" setting on our camera

For the past week, they've been keeping Ford on his tummy 24 hours a day, to ease the compression of his left lung. Luckily, he likes being on his tummy. For the most part.

Because of his persistent fevers, he is usually enveloped in the "Bair Hugger", a big duvet type thing that is filled with and blows cool air on him. It works best at keeping him afebrile, without needing ice or tylenol.
He does get turned over each time his "tapes" - the tape keeping endotracheal tube in place - need to be fixed.
Today they let him stay on his back for an hour where it's a lot easier for him to play with his toys!
Then back on his tummy, and back to sleep.

saturday

okay okay okay. i LOVE you readers, i LOVE that this blog is our best connection to the outside world, and i LOVE that you check the blog frequently. AND where would we be without all the love and support you send us? but when we don't write for a week, and you start emailing, texting and calling me asking that we do - i feel pressured. i know you have the kindest intentions, and i love to know that you're thinking of us in between posts, but i'm not gonna lie, nudging me for an update, well, it gets to me. we'll always write again soon, as soon as we can, time-wise, heart and mind-wise...

thus.

almost two weeks into our time at SickKids and we are getting used to how they do things here/we've been beaten into submission (depending on your perspective - ours shifts daily). we're slowly finding a few people we like and trust, though none of them doctors yet.

and for all the trouble of our first week, there was some good news. one is that Ford has been occasionally smiling. before last week, we'd never seen him smile while intubated. here they intubate through the nose instead of the mouth like in Vancouver, and that has freed his lips to more varied expression. he smacks his lips too and is able to (sort of) chew on his soother. he lost his ability to suck when he had the stroke, but he sure loves to try and remember, which is great.

we captured some video of him smiling and though it looks fine on the camera, it is indistinguishably dark on the computer. who has software to brigthen? maybe i could send you the file. RSVP.

other good news is that he doesn't have DiGeorge syndrome, which they were chasing down due to his recurrent infections.

also, results from the transplant assessment bloodwork show that he is still compatible for an ABO mismatch heart. they will test for this monthly. babies can remain compatible for up to 18 months and it means that the donor heart does not have to be of the same blood type as Ford.

the bloodwork was also to test for certain anti-bodies. since Ford has foreign tissue in him (the bit of heart tissue from an 18 year old who died in a car crash that was grafted onto his aorta during the Norwood) and has had multiple blood transfusions, he was at higher risk for having developed said anti-bodies. positive or high results wouldn't exclude from getting a heart, it would just mean more aggressive immuno-suppressants post-transplant. but with the exception of one positive result, which was low enough to be almost negligible, Ford's results were negative. which is good news too.

we're glad for the good news, and we're relieved and encouraged by the smiling, but we're also struggling. it is so hard when he is intubated. we can't pick him up or hold him and because of the pain management sedation, he spends most of his day asleep. we sit by his bed and read and wait for the few minutes he will be awake so we can smile and wave and coo before he slips back into sleep. the team here is not optimistic that he could be extubated and the thought of waiting at his bedside like this for months leaves us daunted and dodging depression. that said, they are trying to slowly wean the vent, as no breathing tube is much healthier for Ford than having it, if he can manage to breathe on his own of course.

in other news, we've been in the Ronald McDonald House for a week now gratefully not in any kind of theme room. and today, we are moving into an apartment run by the RMH. they have four in the city for their more long term families (ug) and one just became available. it will now be a subway ride instead of a short walk to the hospital, but we are looking forward to our own space.

lastly, i'd been saving this for Valentines day but then missed the occasion - Ford bled a heartshape onto his GJ dressing in january just to send you all some love in return for all the love sent:
and so and so, &c, &c.

How to play the waiting game

Nothing much has changed for us or for Ford over the last few days, so I'm taking the opportunity to flesh out some of the existing details.

Ford has remained in the CCCU since we arrived at SickKids. He is intubated, on a constant infusion of Milrinone, morphine, various diuretics, and gets frequent, regular doses of lorazepam which makes for a pretty inaccessible and dopey little baby. Since they took away his "Bair Hugger", despite how well he did while using it, he is back in a regular rhythm of fevers and is once again sporting his "Chapeau de Glace". We have suffered this latest assault on our agency and authority as "Mom and Dad" with muted resentment and depressed resignation. Although now, when fresh nurses cheerily offer us the "He's your baby so you know him best!" line, instead of smiling shyly and giving them suggestions as to what Ford needs to stay comfortable we guffaw loudly in their face, roll our eyes, and tell them to save that bullshit for the new family next door. Then we say we're sorry, tell them we were just joking, and pitch: "Ford likes it best when he's kept constantly Roc'd or Panc'd and then pumped full of Methadone and Ativan, or at least that's how we like to do it at home..." with as much caustic sarcasm as we can muster.

My routine performance as a bed-side curmudgeon was recently bolstered and encouraged by the transplant social worker, who after listening to us complain and then apologize at length about how they are dealing with Ford here and how mad it makes us, offered that no matter how badly we think we are behaving they've seen a thousand times worse - So by all means, bring it on!

The short term plan for Ford's stay in the ICU was to keep him intubate long enough to recruit his collapsed left lung, treat his acute edema, wean him off the inotropes and milrinone, and then ship him upstairs to the less stressful ward environment to wait for his heart. Maybe even get him stable enough to wait with us at RMH. But after playing aggressively and recklessly with his ventilator settings shortly after arrival, a move that we fiercely argued against (but not surprisingly were immediately told to stand-back and be quiet by the "I'm so impressive listen to my CV" doctor), Ford's lung function went into a tail-spin that has them coming to us now saying "He'll likely stay intubated (and by extension excessively sedated) for the duration of his wait". Now it's not like we know everything there is to know about lung therapy, but the plan that had been started in Vancouver was seeing results, and it wasn't at all unreasonable for us to expect Ford would be much more stable in a few weeks if we had kept on that course. But once again, all because a change in staff means a radical change in therapy, regardless of (and at times seemingly in spite of) what seems to be working, we're trending backwards instead of forwards. We've been through this too many times now to shake our heads at "the way things are done". I really resent having to sift through a mire of combative and belligerent emotions before I can sit calmly next to my son and quietly hold his hand while he sweats through a drug-induced coma.

They've performed two bronchoscopies on Ford which suggest that there might be an anatomical basis for his left lung problems, something about the pulmonary artery pressing on the lung as it pulses, which inhibits the ability for the lung to fully expand, which in addition to the lack of his left diaphragm makes it prone to the atelectasis that he's been struggling with his whole life. Additionally, they found some stubborn bacteria at the base of his lung, an entrenched insurgency holding their own since his last bout with pneumonia, that might be causing his fevers. So he is now also getting alternate doses of Piperacillin and Gentamicin. We're going to cross our fingers and hope this helps. I suppose I've been too hard on them in the preceding paragraphs, good things are still being done. The just really need to work on their bedside manners here.

The upside to all this is that while Ford remains intubated in the CCCU he is registered as a "Class 4" with Trillium which ranks him as the highest priority on "the list", excluding kids who are on ECMO or Berlin Hearts - which are in a class unto themselves (Yeah, Adelaide!).

A word about The List: It's a bit of a misnomer, which is why they are trying to change the expression from being "listed" to being "registered". More so than adults, kids come in a variety of sizes. So queuing into a list based entirely on seniority doesn't really work. If there are 5 babies registered for a transplant and one has been waiting for a year, the next 6 months, 3 months, etc, when a heart becomes available it doesn't necessarily go to the one who's been waiting the longest. Each child is put into a weight bracket and then classed by need. So if a heart suddenly becomes available that will only fit the baby who got put on the list yesterday, it goes to that child, regardless of the fact that a handful of poor suckers have been waiting a lot longer. I found myself in an awkward conversation last night with a mom here who's baby is the same age and weight as Ford and has been registered since December. But her baby is waiting with her at RMH and is as such a "Class 1". So if a heart pops up in the next week, it would likely go to Ford first.

Thinking about those things smarts a bit. We both held our cool, but it was such strange territory to wander into, to try and be rational and diplomatic when your kid's life is hinging on some other kid dying, either far away in a terribly tragic accident, or right next to you because they might suddenly not be able to wait any longer. I suppose the knee jerk reaction is to try and not think about that, but they really want us to. Part of our first meeting included an extended conversation on where the organs actually come from. Surely they are grown in a farmer's field, I suggested, next to the tomatoes, all plump and shiny and red? It wasn't the best time to joke. Another baby, the same size as Ford, needs to die and that baby's parents need to sign a sheet of paper the gives consent for a team of doctors here to immediately fly down and harvest an "appropriate amount of material" from their child. Also, we ought to expect the heart will come from the US, which in addition to having a much larger population base has a statistically greater rate of accidental death, including (Alli singled these two out for us to contemplate, so I've done it here as well) bicycle accidents and fatalities involving drunk driving. So we need to deal with that. This morning while I was making lunch the news was cycling through stories of several traffic fatalities in Ontario over the last few days and I instantly perked up. I got excited and was consciously feeling for the phone in my pocket to start buzzing with "the call". But of course it didn't, and I left and ate my lunch and was saying to myself: You thought you were going crazy before. You're completely psychotic now. All I can imagine doing in that instant is collapsing into an effervescent heap, a useless lump of stinking, steaming emotion all mixing above me in sloppy confused cloud.

So Ford is stuck in the familiar but poorly termed middle-ground, uncomfortably wedged between the best case scenario (being ranked highest in terms of need), and the worst case scenario (waiting in the ICU on a variety of life-support systems). His IV lines, which he needs to supply him with the cocktail of drugs necessary to keep him intubated put him at serious risk for infection (which we've seen now several times) as well as for clotting (which we've also seen now several times), which both put him at serious risk for acute episodes of death (not to be too dramatic). He is also being exposed to the hospitals catch-22, the barrage of unusual bacteria and viruses that are exclusively concentrated within it's confines. He has already been infected with CMV, one of two viruses that pose specific and significant risks to recipients of organ transplantation (the other being EBV, or Mono, which causes a cute little post-transplant complication called PTLD , a nasty cancer). So the longer Ford has to wait in the CCCU the more uncontrollable our fears become that he will get too sick to make it, regardless of how much quicker he might get his new heart.

I hope this all helps to explain the increasing number of blogs that begin with angry rants about brutish staff making changes to Ford that seem to put him in a worse place. I'm going nuts learning how to play this game.

Also, 3 cheers for Wikipedia for supplying me with easy links to complicated words. Don't kid yourself on the quality of the information contained therein, Wikipedia registers a hit every time a doctor consults an iPhone before answering a question.