santa and the gnomes

christmas in the hospital wasn't so bad. nick woke at the ronald mcdonald house to a garbage bag full of presents for Ford and here at the hospital, i woke to teddy bears tucked into Ford's crib and later Santa walked the halls handing out more giant bags of gifts for the kids. not that Ford noticed the pressies, but he certainly noticed Santa and wouldn't take his eyes off him:


more than presents, aren't the holidays about food? Nick brought a pancake breakfast in with him and also smuggled champagne for mimosas in paper cups. later we made the mistake of using the certificates for a "holiday meal" in the hospital's "terrace cafe" for lunch, but our senses were rejuvenated by the unexpected christmas dinner Lindsay brought us. it was the best food we'd had in days.

thanks for the phone calls, texts and emails throughout the day friends - it was a lovin' lovely day!

here's Ford opening one of the many RMH gifts (note the vacant right cheek as he's off oxygen!):

and obviously charmed by its contents:
the hospital was all but deserted so we saddled up Ford and went for a walk through many empty hallways in both the old and new SickKids buildings.
this hospital is very very big - this is one corner of it as seen from the 8th floor:

our favourite find from our exploring was this "asteroid":
inside each crater is an incredibly detailed, minute and for the most part odd diorama like this urban gnome setting (thanks macro lens on the new digital camera):
now it's monday and the hospital is partially back up to it's regular hub bub - it won't fully resume until after new years. Nick is on a plane back to vancouver for 5 days to dismantle, clear out and, as he has built art right into the walls, dry wall and paint his studio at UBC. so Ford and i will be returning to the asteroid as just the two of us for this week and i will surely be haggered come saturday.

we hope you had a happy holidays!

these are the people in our neighborhood (cardiology lives across town)

We continue to learn a lot about Ford from, and are being kept busy with Stroke Team, Thrombosis, Neurology, Immunology, Infectious Disease, Physiotherapy and Occupational Therapy. More has happened with those services in the last week than could in a month in Vancouver - they have so many more resources at this hospital! It's kind of great.

Someone from Thrombosis asked me yesterday "and what's happening with Cardiology?" and I can only say "I don't know". We haven't seen Dr. Dipchand in over a week.

And still, Ford continues to do relatively well, for Ford, having been moved to a "step down" room on the ward on Friday. His milrinone and morphine infusions have since been stopped (they've brought the enalipril up to the maximum does and he's on oral morphine now, weaning doses) and today he may get moved into a private room. They're also weaning his oxygen. He is still on ganciclovir for CMV, and as long as he's getting that, he needs to keep his PICC line and stay in the hospital. "Stay in A hospital" Dr. Mendelson, our cardiology fellow replied when I asked about it, "I'm sure you're anxious to get home". When I reminded him why we came all the way to Toronto and described Ford's so-far-life-long up and down cycle that never really gets up and out, he said he will be checking in with Dipchand, as did the staff cardiologist this week, Dr. Russell, as to how long she wants to "wait and watch". On that front, we're still somewhat confused.

Meanwhile, he's still febrile - it's coming on a month of daily high fevers. Here he is sleeping sweetly with his signature bag of ice on his head:



While I'm uploading pictures, here is the before mentioned "zamboni shelving unit" with the graffiti-d Happy new year! message that is at the foot of our bed, because it's just so darn funny:
(our room has actually been much improved since Mike and Myia brought us a bag of red, orange and yellow fabric and saris to drape over the murals and logos - much cozier now).

Two new blood clots were discovered - one in his jugular vein and one in his BCV, despite being on the anti-coagulant enoxaparin. Dr. Elbers, from stroke team, ordered blood work to investigate whether he may have something in him that makes him predisposed to clotting and ordered a head CT to make sure the clot in his brain hadn't worsened. It hadn't, and in fact both the clot and the bleed were pretty much gone.

Thrombosis doesn't think there is anything wrong with Ford, that it's just the number of lines that keeping being put in and out of him that are causing the new clots to form, but are doing their due diligence with the blood work anyway.

Immunology is also covering their bases, testing for any genetic defects that would explain his chronic fevers and infections, particularly CMV as it is uncommon in kids who aren't immuno-suppressed. That said, they don't anticipate finding anything and think the infections are just a result of being in the hospital for so long.

He is scheduled to get a GJ tube in the first week of January - which will mean the NJ tube in his nose will come out! When it does, we will be able to see his whole face, with no tape and no tubes (as long as no other tubes get reintroduced in the mean time - fingers CROSSED) for the first time since the day he was born. The thought is so wonderful I can't bear to even think it for long. I hope I hope...

Laurie, the most excellent OT, has started giving Ford some (*very small amount of) food once a day BY MOUTH. This is also terribly exciting. Ford lost his ability to suck with the stroke and hasn't been able to take anything by bottle since, or suck on his once beloved soother. But it turns out he can take some food by spoon, or cup. He certainly hasn't lost his interest in food and has LOVED getting his daily tablespoon of it. He is still gagging and vomiting as much as ever, so he can't keep it in his belly long, but the satisfaction of eating seems to keep him not minding the pain of throwing it up.

Oh Ford.

So there has been good progress this week though we otherwise feel kept in stasis while they wait and watch and watch us wait...

For better and for worse

We are frustrated and confused.

Just over a week ago we sat down in a tiny room with Dr. Human and he told us that Ford wasn't going to get better if he continued down the path that they'd started him on. In his opinion transplant was our only remaining surgical option.

Then he also suggested that perhaps we'd done enough to Ford and that given all the complications it might be inhumane to keep cutting him open and rearranging things, reasoning that every time they did so they were slightly compromising his future quality of life. He offered us the choice to withdraw treatment and keep Ford comfortable until he eventually died.

So we rushed out here under the pretense that the emergency was as dire as it could get...

and now?

Apparently Ford is fine.

The Cardiologists here don't see any sign of heart failure, his breathing is perfect, he's been weaned off of the epinephrine and milrinone, the morphine is coming down, his feeds are almost back to their maximum, he's being switched back to all his old medications, and none of this seems to be bothering him in the slightest. He's started smiling again, is wiggling and kicking with his old vigor, is grabbing with both hands. So the big plan that we were waiting for? Nothing. They're going to do nothing.

Obviously we should be rejoicing and hugging each other and congratulating Ford and cheering him on. But it feels instead like the wind has been knocked out of me by the hardest punch to the gut I've ever felt.

When I tried to explain to Dr. Dipchand that this made no sense, how could each hospital come to such radically different conclusions just days apart from each other? She smiled and said "it must be the Toronto air" and left.

While he was telling us about "compassionate care" Dr. Human also suggested that, while clearly they had put Ford through hell, maybe this was too much for us as a family as well, that we ought to think about that too - could we handle another major surgery with a long, hard recovery? We laughed it off at the time. Never mind us, of course we can do it, we're here for Ford and that's it.

But now I just don't know. It's too easy to feel caught up in the energy of major changes, when things are presented as clearly being either life or death and the adrenaline kicks in. But now we're back in this ambiguous middle ground where he is not quite sick and not quite well. And he has been this way more or less his whole life. We're being moved out of the CCCU today (or if not today then tomorrow) and upstairs to the ward where we'll have to stay confined with him all the time in the small room. And the length of stay is as yet undetermined. They want to 'watch' him for a while, and even once he's discharged they've asked us to stay in the city, just in case. The prolonged exposure to this stress of sitting on the edge of some tipping point is really starting to wear me out. It's too easy now to imagine Ford's "failure to thrive" extending out from these months into years. It feels like he's becoming a cruel management project for a curious pediatrics team that will hold him indefinitely for observation, keeping him in this uncomfortable limbo.

And meanwhile I've quit my job and withdrawn from school. Christa's year of maternity leave is rolling into its final months. We've once again got a cat and car and a home waiting for us in Vancouver while we live out of this ridiculous theme room, eat bad hospital sandwiches, sit idly by a bed all day, lay awake all night anxiously recounting all the interactions with doctors, lab techs, and nurses, bicker and argue over our various interpretations of the latest prognosis, and watch our baby get tangled up in reams of plastic tubing and knots of love, hope, disappointment, anger, and fear.

The Stroke Team

So. Today was sort of a bust from the cardiology front. We heard nothing from the transplant team, although Dr. Dipchand did come by to try and see us. But Ford had been taken to IGT (the SickKids equivalent of Children's umbrella dept. "Radiology") at the time to have his picc line replaced and we'd stepped out of the room for lunch.

Well, actually that's not quite true. Christa had stepped out of the room and I managed to finally stroll into the hospital (at 3pm), after sleeping 'till noon and lingering over a lazy breakfast finishing up Christmas cards.

We had an interesting follow-up from the doctor who replaced his picc line, who explained to us that Ford was really seriously "running out of access." His veins and arteries have been so severely beaten up since birth by what now must be a hundred different IVs, central lines, picc lines, art lines, catheters, etc, compounded by the tendency for his blood to clot, that his body is loosing the smooth, open lines that naturally develop. When an artery or vein is injured, either punctured and broken from a failed IV start or occluded by a clot, the body doesn't repair the existing pathway, instead it grows numerous tiny collateral connections that re-route the flow around the damage (I know we've brought this up before). So at this point, what should be a simple procedure of: Insert line to vein, thread line through vein into heart, doesn't work because the vein breaks down at various points into hundreds of tiny channels that are too small and fragile to handle the catheter. The doctor said she initially felt like it was going to be a bust, and then by some miracle managed to push it through. While we both breathed a sigh of relief, she was quick to add that she hopes this is the last picc line he needs, as the next time they might not get so lucky.

There are emergency alternatives, and he certainly wouldn't be completely out of options if he were to lose this line, but it makes his future in the hospital, at least from a IV therapy point of view, more than a little complicated.

Ford handled the whole event really well and by the time we got back in to see him he was alert and calm. Many people have already commented on the intensity of his gaze. It is really something to see, perhaps because the rest of his expressions are so restricted (arms tied to the bed, voice silenced by the intubation, etc), but the way that he watches people is really both amazing and unnerving. He just stares at them, like one of those creepy portraits that will follow you around the room with this unwavering, concentrated look.

We met with one of the doctors from "the stroke team" later on, who initially walked us through the same list of questions that the two neurologists we met earlier had done. At first it felt like a bit of an interrogation, as did the others before, like they were really fishing for information from us that we might be holding back. It was starting to get on my nerves until she took us over to a computer to walk us through Ford's old MRI and head CT scan. We never actually had much of a conversation with Neurology in Vancouver about what happened to Ford the morning of his stroke, we'd got the basic idea, but that was it. I guess Sick Kids is one of the biggest pediatric stroke centres in North America, and they have worked on a lot of babies. So this woman had lots to offer us.

It turns out that they were seeing things in the imaging that indicated Ford might have had several "silent strokes" since birth and they were anxious to know if there were any times when he had stopped breathing, lost the blood flow to his head, developed an extremely high temperature, or was treated for unexplained infection-like symptoms. She explained that it was very unusual for someone to have venous clotting, a hemorrhage, and an arterial stroke all at the same time (which is their analysis of what happened) and that what they were seeing might be the final result of several separate events that somehow went unnoticed until the seizures finally started. Watching her present the slide show of pictures of Ford's brain was dizzying. It was one of the few times I actually thought I might pass out. She walked us through each layer, pointing out what structures of the brain were visible and what was normal versus what wasn't, the animated flood of hemorrhaged blood and dead tissue that eventually took up the better part of his left hemisphere was horrifying. From the pictures, it looks as though the whole left side of his brain was obliterated and I think my chin just about hit the floor. She apologized after noticing the look on my face, for not having warned us about how bad it looked, and she concurred that it really was a lot of damage. But then she repeated what we'd been told all along, that kids show remarkable resilience to damage like this and that he would likely end up seeming almost normal. She then said that if the pictures we were looking at were from an 80 year old man "we'd be having a completely different conversation."

Before she left she volunteered an answer to the question that neither of us had the guts to ask: that they have never recommend a child be taken off a transplant wait list after suffering a stroke. Then cheerily said she was heading to Vancouver in 2 years to start a stroke team at Children's hospital, and that we'd be seeing her then for follow-ups. Mighty good news.

But wait, there's more. Ford was extubated this evening! He so far seems to be doing really well, fell asleep in Christa's arms for an hour and was settled nicely in bed by the time we left. We are both really scared, thinking about how things went last time and how quickly they turned for the worse, but my midnight check-in confirmed he was still sleeping soundly (without additional sedation). It is so great to see his face again, to have his hands untied, and to hear his hoarse cry.

We've got a 10am sit down with Dr. Dipchand planned for tomorrow, hopefully we get more news then.

recent photos

loading Ford into the jet:
(he traveled in the "isolette" and as there are only 3 seats on the small plane, which were taken by the two flight paramedics and Kevin the cardiologist, i spent the flight strapped to a stretcher, which took all the glamour out of the private jet experience).


fueling up in Winnipeg (yes the plane is so small, a full tank only gets you half way):

getting comfy in his new room at SickKids:

we were lucky (?) enough to "score" the Maple Leafs themed room at the Ronald McDonald House. here is headboard-hockey-guy #1:
and #2:

you'll note the hockey stick curtain rod no doubt. the coat rack is also made of hockey sticks, the side table is meant to look like a giant puck stuck in the wall, there's plexi-glass attached to the walls, and the shelving unit is meant to look like the back of a zamboni - which is achieved by the word "zamboni" painted across it. various other poorly done murals of hockey players and fans alike adorn the walls.

it guarantees we won't doddle in the mornings, eager for less jarring surroundings. it makes the ICU seem serene! it also gets the hockey night in canada theme stuck in your head every time you open the closet...

The Hospital for Sick Children

We've all arrived safely in Toronto and the transition has been thus far relatively easy. Perhaps we are just becoming old hats at navigating ICUs, this being our 5th (2 NICUs & 3 PICUs - although this one is technically called a CCCU, or Cardiac Critical Care Unit).

I have made the decision to go with the flow around here and not behave like a petulant child who's been handed off to a new babysitter, obstinately stamping my feet as they explain the new rules and make all their minor changes to Ford. The afternoon of our arrival was certainly vertiginous. Things are never as clear as it seems they should be, despite boxes full of volumes of progress notes and test results (which had to be couriered separately as they would likely not have fit onto the cramped air ambulance), an in-person hand-off by one of Ford's Vancouver cardiologists to the Toronto team, not to mention the constant vigilant presence of Christa and I (honourary, self-appointed cardio-neuro-hemo-gastro-intensive-nursing specialists, aka Ford's primary care-givers), who no doubt unintentionally added a few wrenches into the whole transfer process, armed as we are with our dangerously incomplete vocabulary of over-specialized medical jargon and patchy understanding of human anatomy - The hip bone's connected to the... superior bi-directional cavopulmonary shunt?

Still, Ford was very quickly resting comfortably and there have been no mentionable medical events since. We are in a holding pattern, waiting for the judgements of Monday when the new team will meet, having already gathered a large amount of information for themselves, on top of finally having the chance to work through Ford's complex history, and present us with their plan of action.

While their initial plan will likely be: We need to do more tests, we'll get back to you next week, we are still a little anxious about what to expect. After going through his previous MRIs Neurology came by to examine Ford (who has actually suddenly started moving his right arm and using his right hand again!), and they seemed confident that he'll "be throwing a baseball in no time." Which was encouraging news. We've also had visits from Hematology, Infectious Disease, and Cardiology. Ford's new primary cardiologist, Anne Dipchand, who specializes in high-risk heart transplants, spent some time talking to us about what we'd been told and what we expected from them. It's always a little unnerving when doctors ask you that, but it was really just a way for her to say that despite Vancouver's insistence that there is "nothing more we can do," they are going to take things a little slower and try to come to their own conclusions. She was concerned about Ford's persistent fevers, his history of infection, the active CMV he's being treated for, all of which are (or could be) compromising his heart function and skewing the picture of how sick he really is. It is a hopeful prospect, despite understanding that it means more sitting around and waiting without really knowing what to expect. To be fair to Dr. Human, they did also send us out here with the thought that they were just missing or overlooking some crucial piece of the-puzzle-that-is-Ford, hoping a new perspective might be all he needs.

That's about the gist of it right now. We've had a great time catching up with all our friends in Toronto, who've been amazingly generous with space, time, and empathy. We've got a room in the Ronald Mcdonald House (which is a story unto itself) that is a short walk from the hospital, and are hoping to hunker down and enjoy what we can of the winter here.

thursdays child has far to go

we just found out Ford is being transferred on thursday. one of us will go in the jet with him, the other will follow on a less glamourous commerical flight.

the assessments will take over a week and the process, we're told, though not surprised, will be exhausting. toronto has their cardiac conference every tuesday - so two weeks from today, we should know where we stand.

we have a lot to do before thursday.

meanwhile, they think they may have found the cause of his constant fever - cytomegalovirus (CMV) and they started an anti-viral drug this evening. hopefully we see a drop in his temperature soon.

i got to hold him today for the first time in two weeks, which was wonderful.

less than 48 hours! cleaning! packing! ga!

this sucks

we've had a very overwhelming couple of days.

Ford wasn't ready for extubation on saturday, but on sunday they decided he was as good as he was going to get and so we went for a "trial" extubation. it went well initially and all were encouraged. they even restarted feeds sooner than usual, because he seemed to be handling it so well.

but after 4 hours, he very quickly stopped handling it well. respiratory wise, it went great, but it became apparent that his heart was failing under the stress. they did an echo and reintubated.

the whole reintubation process was a mess. we were asked to leave the room and it was 5 hours before we could go back. in that time they did manage to reintubate him, but Ford accidentally self-extubated himself and so they intubated again. then they wrestled with trying to get some new IV access started (his central line was leaking and had to come out sunday morning). after several failed attempts they eventually started a new central line in his jugular vein, which they were trying to avoid, as it interferes with his Glenn circulation.

meanwhile, Dr. Human came to talk to us about how serious the poor function of his heart was during this trial.

long story short, this is the point where Ford can't continue on the modification path. this is the point where transplant is the only option for keeping him alive.

but before we can list for a transplant, he has to be assessed for a transplant.

things are happening fast and there is a lot for us to figure out. but we will be going to Toronto, not back to Edmonton, for Ford's transplant and will be leaving for Toronto within a week.

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so the first is the step assessment, then we list for a transplant, then we wait.

Ford will have to remain intubated while waiting for a new heart, which sucks. he will be second-priority on the wait list - kids on mechanical heart support are first.

i can't write much more than that now, though i'm sure you have lots of questions. we'll do our best to keep you updated in the coming days.

Toronto friends - we are, at least, and despite, looking forward to seeing you.

the know how

i had planned to go out tonight. but at 9:00pm it felt like my insides were shaking, i determined it the effects of exhaustion and gave in to going to bed early. it's 11:15pm now - but i couldn't sleep for distraction; my mind turning over possibilities, likelihoods and completely unlikely scenarios. i got rather stuck on the scariest of the unlikely and had to turn on the light to bring things into focus, if only my hands. my therapist's voice says "you can only work with what you know" and so i got up to write to you, about what i know. at least until nick comes home from his work thing. seeing nick is like turning the light on.

i know that we're working towards extubating Ford - the plan is to try tomorrow, as long as he handles the weaning of the vent over night. we went down on the PEEP today from 8 to 7 to 6 and he tolerated it nicely. a bit of indrawing and nasal flaring, but short lived. he has to handle 5 to be extubated.

i know it's quite possible he'll be weaned to bi-pap or c-pap, which i definitely know Ford hates. i hope he does well enough over night to warrant at least trying high flow first.

i know Ford has been spiking temperatures for a few days - as high as 40.5 (104.9 f) - and that they've been changing his antibiotics based on the findings from the blood/urnine/ET tube goo cultures. today ID (infectious disease) consulted and made further recommendations in that department. some things are growing in the ETt tube cultures, but they're not sure if they're indicative of infection or not. they're trying to cover their bases, in case.

meanwhile, tylenol and what one doctor calls "chapeau de glace" bring down the temp often enough to keep Ford settled. my friend Lindsay visited today and enjoyed the fact that for all the medical technology in and around Ford, it is a plastic bag of ice on his head that's treating his fevers best. yes, even the medical profession can appreciate the basics sometimes, gratefully.

i know they've managed to get about 500mls of fluid out of Ford in the past couple days after some agressive diuresing. they hoped for another 150 loss today, but he was positive 70 when i left. they still have the night to meet their target. while on the lasix infusion, they check his electrolytes regularly and he's been getting the occasional potassium bolus to accomodate for what they're taking out of him.

i know that Ford's most recent echo did not show improvement in his heart function, as the team hoped. i know also, though, that it is still too soon to think that it won't. he's on inotropes and sedated, and still recovering from/adjusting to the latest physical change in his blood flow.

i know what Dr. Human said it would take for them to decide to give up on this whole modification process and list Ford for a transplant - and i know we're not there yet (see above: too soon), so i shan't elaborate on that conversation as of yet. can o' worms, that one.

i know it felt really great to go to my acupuncturist and learn some pressure points to work on with Ford - for his heart, for his lungs, and for his right arm. it's nice to have intention with touch. she actually reiterated what our acupuncturist in edmonton said in june - "what's most important is that he feel loved" but she was happy to give me a few things to DO beyond that. and yesterday, Ford moved the fingers in his right hand! he hadn't wiggled those since the stroke. i thanked him for it - these little signs of improvement are the moments of encouragement that fuel me.

there. i think that's it. the rest is unknown. except that if i want to get up to make it to rounds on time, it would be very good to be sleeping now. nick still isn't home, but i'll try it again.

good night.

update: not much to update

the post-op tube countdown has begun. Ford came back from surgery with 2 peripheral ivs (one hand, one foot) an ART line, a central femoral line, a chest drainage tube, intubated and with his PICC line, NG and NJ tubes.

one of the ivs has been taken out and today the chest tube will be removed. it's always a good thing when a tube comes out!

the chest tube was draining chyle, but whether this is old chyle that's been freed, or a new chylothorax, is unknown. he is, in the meantime, being fed the fat-free monogen. i'm not sure for how long he'll be kept on that diet.

drugs are being tweaked and changed. his sedation levels have been the most challenging - on sunday morning they gave him a dose of chloryl hydrate (a drug he's had many times that works very well for him) and his blood pressure tanked. they had to push epinephrine (adrenelin) for him to recover, and he is still on a small, and weaning dose of epi. otherwise, as of yesterday, they seem to have found the right balance of morphine and midaz to keep him comfortable but not completely snowed.

the plan is to still keep him intubated "for awhile" and Dr. Campbell said yes when i asked today "for like a week?". they want to make sure that left lung stays expanded and they're keeping the pressure on the vent high -a PEEP of 10 - to do so. as long as he's intubated, he'll be somewhat sedated to keep him comfy.

he looks like he's wearing football gear under his skin as he is almost one litre fluid positive. when he "lost" his blood pressure, they had to give him a lot of fluid, and he's now on a lasix infusion to help get the fluid off. regardless of keeping the positive pressure in his lungs, we can't think about weaning the vent settings until he gets that fluid out - it's too much for his heart to manage. and in the meantime, we can't tell clearly how his heart is handling the increased volume from the shunt until his fluid balance comes down either.

details details. basically not a lot has changed. fluid's got to come off, then we wean the vent. they're "watching" his heart and discussing their mixed opinions on it's function. we wait. i have no idea how long we'll be here.

i'm typing but i feel mostly asleep. this past week/most recent event has really exhausted us. we'd not had a chance to regain our strength from the last major event, so this feels like it's knocked us down even harder.

at least i feel knocked down even harder, somehow lower.

wait wait waiting.

5th times a charm?

Ford, post-op.

Ford's 5th time under the knife went well, even though there were a few surprises.

First off, the bronchoscopy revealed no blockages in the lower airways of his left lung. So the promise of simply sucking out some kind of 'plug' to free up the lung was a bust.

However Dr. Campbell did notice, to his surprise, that Ford's left lung was completely encased in old, sticky chyle, which must have failed to drain back in September when they first noticed he might be suffering from a chylothorax (a cut lymph duct that leaks fatty fluid into the chest cavity). It was this stuff that had compromised the ability of his lung to fully expand and, I gather, in the intervening months slowly force it to quit altogether. He was surprised because this is something that they would have expected to see on an x-ray or a CT-scan, yet it had somehow gone unnoticed.

So he removed as much of it as he could, but got nervous as he closed in on the lung. He had to leave some of it around Ford's lower left lobe for fear of damaging healthy tissue.

The next issue was removing the collateral veins which had grown into the lung, competing with the antegrade flow from Ford's left pulmonary artery. There were many, as they suspected, and they were all cauterized without a hitch. Dr. Campbell then tried to impress us with the 'spectacular quality' of Ford's pulmonary artery, which I guess they suspected would be in rough shape, and we were impressed.

Next up he put in the 'BT Shunt' to supply more direct blood flow from the heart to the left pulmonary artery (which was supposed to be receiving passive flow via the 'Glenn' but was being entirely neglected in favour of the right lung).

Apparently that seemed to do the trick and Ford's oxygen saturations acutely jumped from 70% to 90%. Dr. Campbell explained that even though this is what they needed to have happen, they were hoping to trigger it without putting in the shunt (sucking out goo or freeing up space around the lung). This new modification will put an increased load on Ford's single ventricle, which is a bad thing in the long-run. They are worried that his heart has already been working harder than expected and that there might be some issues with it's function that will be exacerbated by the shunt. It's a wait and see sort of thing, from what i gather. Something they can assist with drugs but might end up becoming a big problem down the line (re: all this transplant talk of late).

Even though Ford performed well in the OR he's had a rough go since coming back to the ICU. His saturations slowly dropped back the 70's. The oxygen they're supplying him to compensate kept getting bumped up. He is very swollen and grey. They had just started him on a transfusion when we left, and everyone seemed convinced that it would do the trick.

The plan is to leave him intubated "for a while" keeping the pressure support high so that they can keep the lung open until it gets its strength back.

No surgery today

The surgery was postponed. Ford is second on the list for tomorrow, so it should happen sometime in the afternoon. He remains stable - sedated and intubated.

Meanwhile, in what is more an attempt to boost troop morale by prompting a flood of supportive and encouraging comments than a vanity project, please enjoy a selection of drawings I've made of Ford over the last few months (unfortunately he is easiest to draw while sedated, so they are bit biased in that regard).

halfsies

yesterday they put a picc line in Ford's arm - he's all out of veins for an iv start. since they'd be anaesthetizing him for that, they decided to do a cardiac cath to check his venous pressure while there.

they learned that the Glenn pressure is totally normal, but it's flow is entirely preferential to the right lung. they learned that, while they knew the blood flow to the left lung was bad (and he's got that pesky chronic left lower lobe collapse), that it is in fact "horrible". effectively, of late, he has been breathing with just his right lung.

"i think we all agree Ford is not well" said Dr. Sanatani last night, and indeed, one can hardly be expected to be well breathing with one lung and half a heart. yikes.

we basically had him at home, ie off any breathing support, long enough to totally tucker him out, and once we saw signs of respiratory distress, and were admitted back to the hospital, he's getting a chance to get some rest again, on the ventilator.

i hate seeing him intubated - they have to keep him sedated for it - but his colour is much better today because of it, and the mottling in his arms, which was severe yesterday, has also shown a marked improvement.

it is because the Glenn is only sending blood to the right lung that they are thinking of putting a shunt to the left pulmonary artery.

the thing is, if the lung is collapsed it can't ventilate blood anyway, regardless of what you send it.

also, part of doing Ford's Glenn so early on, was so that he no longer had the Sano shunt that they put in during his Norwood (first surgery). having a shunt increased the volume load of blood on the heart, and the thinking in the summer was that it was this increased workload that was keeping Ford from thriving.

so what's worse? no flow to the left lung? no, that's bad. or increased volume to the heart? hm, that's not great either.

which is why Sanatani dropped to "T word" on us - if there's no fix for this, Ford would need a transplant.

but they're going to try the shunt.

luckily to put the shunt in, they don't have to open his chest - they can go in from Ford's left side/back. he already has a scar there from the diaphragm plication - this will be a parallel incision slightly higher. also, he won't have to go on bypass for the procedure so that's good too. overall it's a less invasive procedure that his previous heart surgeries (you know you've seen the worse when sticking a shunt in your baby's heart doesn't seem like such a big deal).

while there, they are going to ventilate the left lung, and possibly perform a bronchoscopy to suction out any stuck goo, to try and open that lung fully so that it can do something with the blood that will be shunting to it. they're also going to remove all the collaterals that have formed, or as many that are accessible, to get rid of the conflicting blood flow - Ford's body, in an attempt to get blood to his lungs on its own, has grown a bunch of collateral veins. but we need the blood to forge on through the pulmonary artery. removing the collaterals will increase the flow in the PA.

performing this procedure won't make anything worse, but they aren't certain it will make anything better. it might, but there are so many variables in Ford that there is no clear path to proceed on. today plans kept changing as different doctors weighed in with their opinions, and it seems they are actually still somewhat in debate. when Dr. Campbell was describing the above plan, his train of thought kept wandering off into other possibilities and it was a bit of a confusing conversation as he included me in his thinking it through. later on, Dr. Human assured me they will come to a clear consensus before operating...

and they may operate tomorrow (friday) late afternoon, or on the weekend, TBD.

sooner is better than later in my opinion - Ford is just biding his time on the ventilator, and we're biding ours at his side, waiting for the next step.

There and back again

Ford is back in the ICU.

Having noticed his breathing becoming more difficult over the last two days, accompanied by a marked increase in his (by now habitual but still unnerving) retching and vomiting, a sudden jump in his weight (which is a sign of fluid build-up), and lower than usual oxygen saturations, Christa decided to call the cardiology clinic and find out how worried we should be.

We were asked to come in and see the doctor and told to pack for a few days on the ward - just in case. But after a brief consult with Dr. Human, who confirmed our suspicions that Ford was indeed looking pretty bad, it was decided that the ICU would be a better choice for two reasons. The first being that they can keep a closer eye on him there than on the ward. If his condition takes a turn for the worse overnight they'll be in a better position to help him. The immediate plan for his treatment is to up his dosage of diuretics to see if he'll pee off some of the excess fluid, get him on some minimal oxygen support to help his breathing, test for viruses that might be making him sick (he's already had his seasonal flu, H1N1, and RSV shots), and then sit tight and see if he improves. The second reason is that apparently during Cardiology's last big, collective meeting they brought up (unbeknownst to us) the problem of Ford and what could/should be done to help him. It turns out they are not quite as thrilled with his progress as we are (we tried to impress on him how amazing Ford's smiling is, but he wasn't having any of it) and that his failure to thrive over the last 6 months complicates their long-term expectations.

So now there is another surgery.

They are planning to put another shunt into Ford's heart, connecting his reconstructed aorta to the left side of his pulmonary artery. This will, in theory, bring an overall increase in blood flow to his lungs, raising his oxygen saturations up to where they expected to see them post-Glenn, and also balance the blood that is being delivered to his lungs, bringing more to his left side, which has suffered from chronic collapse since his diaphragm surgeries and is also currently being neglected by the 'right-wing' anatomy of his "Glenn circulation."

We are, as always, fuzzy on certain details, but it sounds as though they can do this procedure without cutting his chest open again, similar to how they did his diaphragm plications, and we are relieved that he won't have to go through another open-heart surgery in the near future. It was impressed on us that they had no reason to wait to do this, that the last 6 months have shown them that Ford is committed to foiling their plans to fix him. So they might as well exhaust their options now and see if that finally gives him the impression that we are doing everything we can to keep him amongst the living, so he might as well stop resisting and join us. We're expecting this will happen as soon as next week and that Ford will remain in the ICU until then so that they can continue to efficiently manage him.

Christa and I had a little chat about whether or not we ought to bring up this next part of the story. I guess for us the word is clouded with fear and reverence, and given the many auspicious occasions we realized in hindsight that a little wood-knocking would have gone a long way, we are expectantly hesitant to throw it around. But in the end my penchant for drama and flair for epic blogging has won out, regardless of how much it angers the respective pantheons and phantasmagorias...

Dr. Sanatani, another cardiologist who has been following Ford, was a little grim in his opinions this afternoon, suggesting that there were only two things left that they could do for Ford. If this shunt doesn't do the trick then we ought to list for a transplant.

Those of you who've been with us from the start might remember that we initially were given the choice to choose transplant as a primary treatment, instead of the 3-stage reconstruction, and that we had in fact chosen to go that route. It was subsequently impressed on us that transplants are a last-ditch effort, only to be used when you've exhausted other options, because you only get one shot at a transplant and they're a risky business at best. It's hard to believe that we could be coming full circle, that our initial logic for choosing a transplant over the surgeries he's been through was that it seemed much simpler. Just one surgery instead of 3. A whole heart instead of half, etc... and now after everything that's happened to Ford I feel like it's come back to haunt us and is sort of laughing from the shadows with an "I told you so" smirk. It's fair to point out that we aren't at that point yet, and that we knew it could come down to this, but to have it suddenly appear on the radar is terrifying.

I don't know if I can clearly express these complicated feelings that I have towards Ford, it's not that they are simply bittersweet. I have been feeling lately like I can't take much more of this, that ironically I am not made of the same stuff as him - maybe he's got more of his mom in him than me (I would hope so). I don't understand how a little body can take on so much and keep going. People say that he's a fighter but I've never been able to see it like that. All I see is this little being that is being beaten up, and that it lacks the capacity to see that it's not supposed to be like this, that most of us get off easy by comparison. To me that's more like being a lightning rod than a fighter. It's not a reciprocating force. It's just this little stick that can't help but be pummelled by an extremely damaging energy while the rest of us stand on the sidelines, oohing and awing. And then what am I supposed to do? I'm supposed to love this thing and hold it and nurture it. It's like grabbing onto a live power line and being unable to let go.

Home again, home again. Jiggity jig.

Here's Ford at home ( precariously perched on our dinner table, if you can't tell), where every baby belongs. He's practicing his Vulcan neck pinch on my hand - silly baby.

So my plan to set everyone straight seems to have worked, regardless of how reckless it may turn out to be (ie: dinner table). We were discharged Wednesday afternoon and have slowly been readjusting to Ford's presence at home. My initial, impulsive impressions were correct: We could not tolerate another rotation of the "Blue Team" pediatricians, comprised mostly of student interns and junior residents, who seem more interested in impressing their superiors than in taking care of Ford. The morning rounds were, at times, almost embarrassing, with us having to repeatedly impose ourselves onto the conversation to preserve some semblance of accuracy towards his condition: No, he is not 7 months old; no, he is not tolerating is oral feeds "really well," he doesn't take food orally; no, he hasn't regained full use of his right arm, he hardly uses it; no, he isn't taking 50mg of Blahblahblahbitol, please don't up his dose of that, you've got your patients mixed up, etc. Not that I'm tooting my own horn, here. It's just that this last stay in the hospital has brought home the importance of the expression: You are your child's advocate. Which was at first a horribly overwhelming abstraction, and is now, I feel, the only thing standing between Ford and another 6 months on the ward.

Not that we are the competent professionals we blame the residents for not being. This evening, for example, we had to frantically page both the Cardiologist and Neurologist on-call because Ford's evening dose of Phenobarbitol got lost in the day's chaos, and the pharmacy where Christa dropped it off closed before we could get there. In a pinch, it appears, no 24 pharmacy in the city can make Phenobarbitol for you, despite a doctor's willingness to fax in a prescription. So we had to haggle with the ER's charge nurse to let us come and pick up a free dose prepared by the hospital, without ever actually confirming with them the presence of an actual patient (Ford was at home, comfortably sleeping - not on the dinner table):

(a snippet of the conversation in the ER)

Me: I'm here to pick up a dose of Phenobarbitol for my son. My wife called the Neurologist and they said you would make it for us.

Nurse 1: Umm. ok. Is this an emergency? Where is your son?

Me: He's not here. He's at home sleeping.

Nurse 1: Umm... Ok. I don't think I can help you...

Me: I was told to ask for "Jerry"

Nurse 1: ...Ok. Well, you can go ask for her at the Nursing station.

Me: Hi. I need to speak to Jerry about getting some Phenobarb (note my casual abbreviation)

Nurse 2: Oh. Ok. Here. We have a note saying: Mom to pick up Phenobarbitol for Ford.

Me: Yeah, that's it.

Nurse 2: Ok, I'll just cross out "mom" and put... umm.. "dad"?

Me: Sure. Great.

Nurse 2: Ok. Well I hope it's the right dose.

Me: Yeah, yeah. Thanks. Do I need to sign anything?

Nurse 2: Umm... nope. I'll just put "dad" down here.

Me: Ok, great. See ya.

Moonlighting as a drug-pusher in a children's hospital ER, before making a speeding exit in a taxi, is not what I had in mind when I thought I'd like to "have kids."

I guess we're still learning. I hope the progress is exponential, otherwise Ford is in for a doubly rough start.

_______________________________________
(A self-indulgent treat that I'd like to share with all the grandparents out there)

Though I believe Grandma Corinne gets full credit for coaxing the first smile out of Ford post-stroke, I credit the second one to dancing around the room with him to this song.

Nothing's warmed my heart more these last few days than watching his face light up as we spin around together. I was prepared to accept that he might never smile again, having had to endure this last ordeal. It hurt so much the first time I saw him crack a grin, it was like being punched in the face. I hope that gets all you old fogies smiling as much as it did the young baby (and perhaps all the rest of us in between, too).

beautiful!

not only did the lovely Lisa Turner drop off an AMAZING basket of goodies and goodness from the PFI gang (thank you paperny people! we will come visit when Ford is home again!), but she also took these wonderful photos:

Escape from the Ward

We were moved back upstairs to the ward on Saturday afternoon and have since been stuck in an uncomfortable limbo. Neurology seems confident that Ford's seizures have been tamed by the Phenobarbitol, Hematology is happy with the dosage of Enoxaparin, Cardiology thinks Ford is doing as well as he ever has (despite his bouts of heart-block, which have probably been happening the whole time we were at home anyway, and for which they are basically planning to do nothing), Gastroenterology wants to see him in a month in their clinic, we have already been in touch with a community based OT/PT who can follow Ford from home, his feeds have been weaned back up their previous rate, his two weeks of oral antibiotics are almost done, he's got no infections, viruses, etc, AND SO... Why are we still here?

We seem to be at the mercy of the dreaded 'charge nurse' and the junior pediatric resident, and god know's why they're suddenly in charge. As we've repeatedly experienced, right from the get-go to this very day, whenever someone new assesses Ford they panic: Oh he's really blue, he's struggling to breath, he has an erratic heart rhythm, he's not feeding well, he's so far behind in his development, ergo: this kid is really sick! Well, no kidding. But we've got the dismissive farewell blessing from 1-2-3-4 teams of specialists, who all think that he's as well as he's going to be right now, he's not being actively treated for anything, by anyone, and in the meantime we are forced to suffer through the exhausting routine of hospital living. Two weeks ago, when Ford's surgeon cheerily suggested that we take the opportunity to check into the ward for 48 hours of antibiotics and some respite I wanted to smack him. RESPITE? I'm not sure what he does for relaxation, but confining yourself to a prison-cell-sized room, voluntarily giving up all your privacy, tying your kid to his bed, forcibly restraining said kid so they can frequently stab, squeeze, prod, pinch, and irritate him, subjecting yourself to torturous nights of hourly wake-up calls on top of a fussing baby, amounts to something more like hell than a vacation in the Bahamas...

There is currently a dour clump of doctors slinking through the halls, slowly making their way to our room for Monday morning rounds. I'm really hoping I can talk some sense into them (or if nothing else impress upon them how unnecessary and agonizing this is for the 3 of us), and reclaim some control from the anxious, green med students, and policy-Nazis who've hijacked control of this ward. We just want to go home.

To end on a happier note, we've been afforded some real, high-quality respite care from the recent arrival of Grandma Corrine, who's taken to sitting with Ford in the afternoons so we can make some of the many and much needed changes to our home - to better accommodate Ford. We're really thankful for her offering to make the long drive up from California, for her relentless optimism, and for her patience and understanding when faced with our frayed nerves and wit's-end behavior. We're actually thankful for the help that all of you have given us over the last 6 months, here or there or elsewhere, or just in reading the blog from time to time and keeping us committed to updating it.

progress

today was a good day.

Ford was switched from bi-pap to c-pap in a move towards weaning him off entirely. the thinking at rounds is that he could be off c-pap by monday. late morning, our nurse took off the mask to wash his face, and as he was SO very happy as soon as it came off, she gave him a good 15 minute break. during that time his sats and work of breathing remained stable.

Vik, the resident following Ford, is a bit of a douche, as Nick put it. we tend to ignore what he has to say and wait until one of the doctors who's thinking is more inline with our own comes by to press for changes we feel are right for Ford. he was the one with this whole wean-by-monday plan. he admitted he was being overly cautious, concerned about Ford's left lung lower lobe collapse. i explained Ford has chronic atelectasis but he blew that off, as he does most things we say, simply, it would seem, so he can resume talking, which he prefers to listening. luckily, he ran his plan by Mona, the fellow, who thought since he did so well off for 15 minutes, why not try 2 hours. yay!

Ford is a different baby off bi-pap - content and social. i think having the mask on must be depressing, and he tries his best just to hunker down and wait it out when it's on. this is what it looks like - so i can't blame him for being so unsettled with it:
it was wonderful to see so much of his face when it came off. i missed it these past few days.

though he was much more relaxed without the mask, he certainly doesn't seem like his "old self". kind of too relaxed - like out of it relaxed. we have to remind ourselves it is too soon to worry much about that though - it has only been 8 days since his stroke, and his body is still adjusting to the phenobarbital, which makes you a bit dopey. soon, that effect will subside and soon he will be well into healing from this most recent trauma.

near the end of his 2 hour break, he fell asleep on his tummy. happily, Mary, the intestivist, happened to be near by observing Ford's wenckebach (oh yeah - he now spontaneously goes into wenckebach no where near his dose of carvedilol) and she commented (and we made her write it down) that Ford did not have to go back on c-pap at all, as long as he remained comfortable. hurrah!

this bouyed my spirits greatly as, if he can swing 24 hours off c-pap, we can go upstairs and be that much closer to getting back home.

my mom arrived from California last night, so we left he with Ford in the evening and came home early for some much welcome decompressing time.

Daily Maintanence

Minor updates...

Ford has been moving in and out of 'heart block' over the last few days. I believe they first noticed it after restarting his regular medications, which were held for a few days following his seizures. Cardiology is seemingly scratching their heads as to why this has happened. The irregular rhythms are timed with his doses of metroprolol, one of the heart drugs he's been on for months now and has never reacted badly to before. The unsatisfying shrugs, followed by: well, we know he did this after his Glen, so we're not really worried, were accompanied with a pro-active change in his medications today. But unfortunately the new drug, carvedilol, also seemed to trigger the same funky rhythm immediately after it was given this evening.

The weird rhythm, called "winky back" (causing Christa and I to snicker and mutter off-coloured jokes about the "science" of cardiology), is actually "Wenckebach" (causing Christa and I to feel embarrassed and sit quietly while we are schooled by the science of cardiology), which causes a strange phasing of the electrical signals in his heart across several beats, eventually getting so far out of sync that he drops a beat. Even though his heart rate quickly slows from the 140's to the 80's shortly after the heart block kicks in, as longs as he doesn't exhibit any other signs of distress (extreme drop in blood pressure, drop in O2 sats, cyanosis, etc) he isn't in any immediate danger of kicking the bucket (incidentally, kicking-the-bucket is another misappropriated term from the dictionary of cardiology, which actually refers to Willem Kikntëbôkt, a 16th C. Swedish anatomist who first theorized the link between Incomplete Kardiac Electrical Activity and imminent death. If you don't believe me, type 'IKEA' into wikipedia for a disambiguous reference)

Next up, I ought to have knocked-on-wood when I pandered to the now relatively insignificant status of Ford's lung function in my last post, for today, spurned and enraged, they decided to exhibit their wrath via a pleural effusion - which is a leaking of fluid into the pleural cavity that surrounds the lungs. This can be very dangerous if it is not immediately treated with the surgical insertion of a drainage tube into the chest, but since neurology is anxious that Ford not go through any more surgeries in the near future (though this mostly applies to heart surgeries), folks seem reluctant to go that route. And assuming the effusion remains minor it should be successfully removed by the increase in his diuretics that they ordered this morning and a longer than expected wean from the Bipap.

Behaviourally, Ford was much more alert today than he has been since the seizures. Even though the bipap mask obscures most of his head, forces him into an almost constant cross-eyed stare, blows cold, pressurized air all over his face, and prompts him to produce disgusting amounts of frothy, bubbling drool (or "happy bubbles" as well like to call them), he managed to remain awake and calm for an unusually long period of time. We spent much of the day reading to him (Christa from "Global Babies" and I from "Under the Volcano"), to try and stimulate and/or salvage his "speech and language" centre. As well as lots of cuddles and play time, paying particular attention to his right arm, which was moving more today than it yet has, but is still pretty much dead weight.

And so it goes.

mon petit chou

Finally got to meet with a Neurologist.

She confirmed the relative good news that while nothing had gotten any better, things hadn't gotten worse.

The treatment for his venous sinus thrombosis (brain vein clots), was downgraded from Heparin to Enoxaparin, which is easier on his system long-term, and poses a lower risk of starting new bleeds. The existing clots will take months to break down, if they do at all. She said that only 60-70% tend to fully dissolve and that if they don't the blood will form/find new ways to get out of his head. This happened with Ford's first clot (in his left femoral vein, back in Edmonton), where the blockage has remained but his body has grown multiple collateral connections around it to keep the blood supply moving. This has also happened throughout his chest, prompted by lower than normal oxygen saturation, where (according to his surgeon) a surprising number of collateral pathways had grown into his lungs with the hopes of boosting their blood supply. So from this point of view, Neurology is only interested in seeing Ford in about 3 months time (assuming the seizures don't come back) to do a repeat CT scan and see if there has been any progress in breaking things down.

We were, of course, mostly concerned with how damaging this has been for him and how much loss of function we should expect. Unfortunately it's pretty grey and she was reluctant to give us any definitive answers. But, similar to his circulatory system, if parts of the brain get damaged new pathways are developed. She emphasized the plasticity of infant brains, suggesting that his brain will likely prioritize its functions and make sure that things which are high-priority (like speech and language) get moved to less damaged areas, but that this comes at the price of loosing other abilities that would otherwise occupy those regions. And that, apparently, the brain does this of it's own accord and we are hopeless to predict what exactly will happen.

So comes the disparaging news. The area of this brain that was affected by the bleeding has been damaged, and it won't recover. So he has lost a certain amount of function and only time will tell what he can recover. Since the bleed was on the left side of his brain she suggested that speech and language were likely affected, but how badly and to what end, we don't know.

He's kicking both legs with more or less equal vigour, but his arm is still pretty dead. He will likely always suffer from impairment and weakness in his right limbs, and his arm will probably be worse off than the leg. He'll be getting assessed by a physiotherapist soon, who will determine what we can do to aid him in recovering what function he can, and since we were already on the fast track to getting Ford into several long-term, community-based therapy/development programs, this will likely just get lumped in with the rest of his treatments when we bring him home again.

There has been some disagreement (mostly between Christa and I) about whether what happened to Ford was 'technically' a stroke or not. We hadn't really got a clear answer until today, when the neurologist explained that it was 'technically' a venous stroke, which is mechanically different from the more common arterial strokes, but creates similar types of damage. Not that it really matters, in the end, this bickering over words. But it does make me feel like less of an alarmist when I go around telling people that my son had a stroke.

From the now seemingly insignificant respiratory front (remember when we were so desperately concerned with Ford's breathing and chronic lung collapse?), Ford was extubated to Bipap today, even though he hates it so much it turns him into a writhing, psychotic monkey (or maybe that was the stroke this time). His cry is pretty weak, almost inaudible, but that should hopefully recover over time. He's been hacking up wet, blood streaked phlegm all day, which makes us wonder whether he's come down with tuberculosis too (hey, at this point why not?), but is really just post-intubation irritation. Hopefully we will be back up on the ward by the weekend and if that all goes smoothly we might be home sooner rather than later. Neurology isn't interested in following him very closely anymore, they say it's up to the occupational and physiotherapists, as well as general pediatrics, to decide when he next gets the boot.

another day

Ford had his MRI today, and a picc line put in his right arm. they plan to extubate tomorrow morning. it will be great to hear his voice again.

he didn't come back from all of that business until 4:30pm - too late to get to talk to neurology about any findings, which we figured may happen. we did hear that it looked the same as his last CT scan. which at least tells us it hasn't gotten worse.

they stopped the heparin infusion and have resumed enoxaparin.

no change in the movement of his limbs.

Not much more

He's still sedated and intubated in lieu of tomorrow's MRI/picc line insertion.

There were several moments today where he was relatively alert, looking around, making eye contact. But in general he's still pretty dopey.

His right leg is moving a lot more than yesterday, but is still not as strong as his left leg.

There were times when, being particularly irritated (doing the really uncomfortable silent-screaming-thing that intubated babies do), while wildly flailing and kicking his other limbs, his right arm would move as well. He still won't grab anything that's put into his right hand, and only seems to be able to make uncoordinated jerking motions with the arm. Hopefully it will just take more time.

not much

not many changes today, in Ford or his treatment.

his right leg was moving more today, which is very encouraging, though his right arm remains motionless.

he opened his eyes for a few minutes this afternoon which was also great to see, and both Nick and I took turns holding him in the rocking chair. it reminds me of the early weeks, when it took 3 people to move him into our laps, the delicate transfer of him while intubated.

yes they decided to keep him intubated until tuesday. on monday, he's getting an MRI and a picc line put in, which he'd have to be intubated for anyway. so it's better not to extubate just for one day.

which means they're keeping him pretty sedated, so that he's not too uncomfortable with the tube down his throat. they have discontinued the midazolam and are just running a morphine infusion, and giving occasional chloral.

so we're waiting to get to tuesday. wait wait waiting.

Figurative Heart Failure

Not a whole lot changed today with Ford's condition. He remains pretty dopey, hardly opened his eyes more than a crack today, and wasn't really coherent when he did. He was, however, getting a lot more feisty with his grabbing at the breathing tube and his kicking. Problem is that at the moment he is only able to move his left arm and leg, his right side (which was the side that was seizing, the bleeding being primarily on the left side of his brain) is seemingly paralyzed. While this is likely not going to be permanent, and it is still far to early on in his recovery to predict any outcomes in terms of his potential "loss of function," it is so uncomfortable to watch him wiggle only half his body.

Neurology has so far been strangely absent from his bedside, despite ICU's constant referral (deferral?) to their authority on the matter of fully assessing Ford's situation. Two of them came by today, poked at his right arm and leg, asked about whether or not he had moved them post-stroke, and then left without offering us anything.

A repeat ultrasound of his head showed that so far the bleeding hasn't spread, and might even look a little better, and that otherwise things are the same.

He is being kept on a long-term anti-seizure medication, phenobarbitol, along with infusions of midazolam and morphine, hopefully short-term.

They are weaning the ventilator with the plan of extubating him early tomorrow.

Ford's primary pediatrician, the one who was following him post-discharge, came by today to offer her condolences and get brought up to speed on his condition. She suggested that we take any predictions on his long-term function with a large dose of skepticism, offering that kids who suffer brain injuries often show remarkable resilience to the insult, sometimes making full recoveries when the initial prognosis is grim. There are small signs that things might not end up being as bad as they look to us right now, but like I said, it's still far to early to know anything much at all. And while things certainly aren't peachy, she did also say that she would rather this have happened to him than an episode of heart failure. Her experience suggests that this will be easier for him to get over than any more trouble with his heart. So we take small measures of reassurance and try our best to ignore the depressing stares that everyone is throwing our way.

Yesterday I suffered my own episode of (figurative) heart failure when one of the clinical nursing specialists' eyes filled with tears as she asked if we would mind if she started praying for Ford. No, of course not... but do you have any idea how scary it is to infer from a medical professional that it's become a time for prayer? Having no faith in any benevolent divinity myself, it amounts to throwing in the towel. I'm pretty reliant on the available technologies and Ford's dynamic biology to pull him through this. I do not want to hear about doctors and nurses abandoning their practice for prayer until we're all clear that he's on death's doorstep.

Amen.

Updates on the Brain Drain

So Ford definitely has a large clot in one of the major veins in his head (can't remember the name of it at the moment, running on 2 days of almost no sleep). Along with the clot there is evidence of bleeding in his brain around the vein, but we're not yet sure how extensive this is. We haven't yet got a detailed report from neurology regarding the CT scan earlier today, and we are anxiously waiting for news of how serious this event was. Cardiology came by to let us know that from their perspective (they looked at his heart circulation during the CT as well) everything is basically as they expect it to be, that the concern of another clot in his superior vena cava was a false alarm. phew, i guess.

Rounds this morning were amazing. They tried to keep us out but Christa very curtly told them to F-off and let us in (although not in so many words). I've never seen so many people around his bed.. in fact there were so many that they filled most of the room, a room with like 8 patient beds in it. And all these doctors were shouting over each other and calling out suggestions and pushing up to try and see him, while x ray carts, and IV trolleys, and Echo machines where being wheeled in and out. It was all a bit overwhelming.

So the trick now is to treat the clot without aggravating the bleeding, but the only treatment for clots are anti-coagulants, which are known to cause bleeding. Hematology spent a good 10 minutes repeating to us that this approach was "a really fine balance" (literally, they just kept saying that over and over again.. very annoying). The danger being that if the clot gets any bigger it could trigger extensive brain damage, but if in treating the clot they prompt the bleeding to spread there will also be extensive brain damage... So we are hoping that this balance can be achieved and maintained, while feeling the acute pressure of being caught between a rock and a hard place.

At the moment Ford is totally stoned. He was bombarded with sedatives this morning to counter the seizures, and has had continuous doses throughout the day to keep him comfortable through all the tests. But now they want to know if he will wake up and show signs of neurological impairment, and he won't because he's been so aggressively beaten up with drugs. There were glimmers of life earlier when he tried half heartedly to pull out his breathing tube (prompting more sedation), and we are told to be reassured by his level of awareness during the seizures (he didn't lose consciousness and was able to track movement with his eyes and grab with his left hand while his right side was trembling). So perhaps for the moment he is still mostly there, but the next few days will be pretty critical in terms of watching how the clot respond to the drugs and keeping the bleeding contained. He is back in fragile condition and we are feeling a stunning bewilderment in the face of how quickly things went wrong.

Walking around the hospital was so utterly jarring today. We've gotten to know so many people here, and their usually friendly faces were all so grim and compassionate. I've never had my shoulder touched so many times in so few hours.. I hope I don't catch swine flu.

Seizures! Yay!

Ford started having seizures at 2am this morning, prompting an overwhelming flood of people into our room to administer heavy doses of sedatives and paralytics. The seizures lasted for about 2 hours until the aforementioned intervention brought them under control. Because he was so heavily knocked out they had to intubate him, so we are back in the ICU. Tuesday's voluntary trip back to the hospital with only a mild concern about a loose suture has been spinning out of control over the last 48 hours (beginning with Ford going back on oxygen support yesterday because a blood test showed his hemoglobin was unexpectedly high - which, if left to rise too high turns your blood into a thick sludge - Ford's bone marrow is trying to compensate for his low oxygen saturation by producing higher levels of hemoglobin, which carry oxygen through the blood). So much for our two day stay. By 5am they had Ford stabilized on the ventilator, were busy with the now routine comedy of attempts at getting a working IV in him, and by 6 he was being wheeled into radiology for a CT scan of his brain to try and figure out what the problem might be.

It's worth pointing out that Dr. Human had scheduled a CT scan on Ford's head for today anyway, just as a precaution, to rule out anything going on upstairs that might explain his persistant irritability. It's not unusual for kids who've had the 'Glen' surgery to experience intense head-aches from the higher pressures in their veins. And apparently a potential side effect of the anti-coagulant treatment that Ford has been getting for months now is bleeding in the brain, so that is also something they were hoping to 'not see.' Despite being a bit frightened by the prospect of something like that going wrong we were reassured by the Laurie, the CNS, that everything would likely be fine as Ford was not exhibiting any clinical signs of brain trauma - aka, seizures.

So. Now he is.

Just got an update from the intensivist while I was writing this that they did see some bleeding on the left side of his brain under the CT scan but that they weren't sure yet what was causing it. Neurology, Neurosurgery, Cardiology, and Hematology are all apparently clustered around the computer watching the pictures and trying to sort it out. So, suspicions are potentially being confirmed here that it is a small bleed (or subarachnoid hemorrhage) as a result of him being overly anti-coagulated, but it might also be a venous sinus thrombosis, which is the result of having too little anti-coagulant (compounded perhaps by Ford's thick, hemoglobin heavy blood). From what i gathered, the bleeding isn't too bad and they aren't thinking of a surgical intervention at this point. They're just going to let him wake up and then wait and watch.

Rounds sure will be interesting today. If the ICU staff lets us in.

We sure enjoyed our two week holiday from the hospital.

oh bother

Ford is back in the hospital, though not for what we worry most about - respiratory distress or heart failure - but potential infection. the incision on his chest bled a bit monday night and by tuesday morning stiches had poked themselves out of the skin and the area was red and puffy.

dr. Human thought sending him home on oral antibiotics would be a safe course, but after surgeon dr. Campbell took a look at it he admitted Ford and ordered IV antibiotics - they act faster.

in the meantime, while looking at his incision, we also talked about Ford's high level of irritability. we've been attributing some of it to his frequent vomiting/gagging fits - which haven't increased in frequency of late (10-15 times a day) but each "attack" has been lasting longer, up to 10 awful minutes each time. instead, dr. Human pondered it could be very bad post-Glenn headaches that are keeping Ford unhappy (note he isn't entirely unhappy - but since the Glenn he has not been the same baby as he was before). headaches are caused by the increase pressure in the head, now that the SVC is moving blood simply by gravity, instead of being pumped by the heart. these headaches can last a couple post-op months at least, but dr. Human wants to rule out anything worse than just increased pressure - like a missed clot. they've ordered a CT scan of Ford's brain. that test will take place tomorrow.

speaking of clots, the one formed in Ford's left ventricle has come down in size and they discontinued Ford's twice daily enoxaparin injections. hurrah! no more stabbing needles into his thighs. we're pleased with that. Ford will be kept on some aspirin instead.

the feeding study Ford had last week went perfectly - he swallows well, with a good rhythm, and he protects his airway when swallowing or crying. so that was assuring. it does mean that his vomiting thing is therefore not caused by an uncoordinated swallow.

they haven't seen an HLHS baby with this gagging problem before and their lack of insight is disheartening.

as you can guess, being back in the hospital is also disheartening, though very familiar. the treatment is done over the course of 48 hours, so hopefully the stay isn't any longer than that.

a walk in the park

Ford's first visit to Stanley Park on a gorgeous autumn day:


It also happened to be halloween:

Ford imitates "beluga face" outside the aquarium:
Taking in all the beautiful colours!