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!