Absorb and normalize

Ford made it through the procedure this afternoon and even looked surprisingly stable when we got back in to see him. They were successful in opening up his right jugular and putting in the 10mm stent, but were a little concerned with some anatomical narrowing there, which is pinching or kinking the stent a bit. Otherwise it appears to be working to keep the vein patent.

Ford woke up a few hours after coming back from the cath lab, but the experience was so uncomfortable for him they quickly sedated him again. However the sedation boluses triggered a drop in his blood pressure, sats, and heart rate to the point where we were once again surrounded by an anxious group of people -all eyes fixed on his monitor. Knowing Ford's "style" helped to alleviate some of the drama, and we even felt capable of passing the time tossing awkward, dark jokes back and forth while waiting for him to recover. Sometimes we forget and end up needing to remind ourselves that these people aren't our friends, despite the prolonged periods we all spend ostensibly hanging out together.

So we ended up with a strangely calm evening that somehow seemed to exacerbate this afternoon's emotional food-processor (I'm searching to replace the clichéd "roller coaster" metaphor with something less resonant of a pleasant summer afternoon that isn't "*&@#-fest" - suggestions would be appreciated). As I've said before, it's exhausting to be repeatedly walloped with life-and-death decisions that ultimately land us back in an uncomfortable middle ground mediated with an endless titration of mechanical and pharmaceutical supports. Yes, Ford is technically "ok" for the immediate future, but his long term shot at things is getting increasingly complicated.

If we can put aside the rhetoric of his toughness and strength, we're left with the doctor's reluctant admissions. Every time Ford endures a brush with death and manages to pull through it takes a toll on him that can't be measured with candied sentiment alone. Unfortunately for him both Christa and I feel completely incapable of making a choice that ends in resignation, with us carrying another baby out of the ICU into a back room to die in our arms. And with maniacs like us at the helm he's as likely to be driven to death as he is to life.

So come along onwards with us! As we absorb and normalize his accumulating handicaps and melt at his every smile.

more bad news

Ford did ok through the night but there was more bad news this morning. After taking a closer look at his head CT yesterday, they noticed that he not only has a completely occluded left jugular and BCV, but his right jugular is partially occluded too (might be the other way around, I'm bad with left/right). It would appear that this is the main source of our current pickle and does not bode well for his continued presence here amongst the living.

Although they gave him an appropriate dose of the clot busters yesterday they are worried it might be too little too late and have ordered an emergency trip to the cath lab in lieu of waiting to image the area for signs of improvement. Sometime this afternoon they will attempt to manually dilate the partially obstructed vessel, and possibly put in a stent, hoping they can open it up enough to get the blood moving out of his head.

The two major concerns now are that yesterday, after coming back from his second CT scan, Ford crashed and came pretty close to kicking the bucket. He is apparently reacting very badly to being handled right now and any intervention, no matter how innocuous, seems to push him over the edge. But, if they don't go ahead and try to open things up he is at serious risk of losing blood flow through both jugular veins and dying from cerebral ischema - which coincidentally, though circumstantially different, was the cause of our first son Emmett's death.

Stick that in your karma-pipe and smoke it.

Rockin' the Defibrillator

"You need to come now, they've got the crash-cart out."

That's what Christa was confronted with while calmly waiting for Ford to come back from his second CT scan this afternoon. Somehow things had gone from stable to !#$@%* during a routine procedure. His sats were down in the teens, his blood pressure was almost non-existent, and his heart rate was struggling with an episode of irregular rhythm. He was hooked up to the defibrillator, had a "chest compression board" underneath him, was receiving boluses of inotropes, blood transfusions, and far too much attention from the available ICU staff.

We're not really sure what happened, or why. But after yesterdays reluctant admission once again spiralled into a crisis, we are thankful that the team here has a hearty measure of intuition and a keen eye for anticipating Ford's now routine brushes with death.

As previously mentioned, there were two main problems they were looking to diagnose today. One, why his left lung was so collapsed and surrounded by such a large amount of fluid. And two, were there new developments in the clots in his jugular and brachiocephalic veins, despite the therapeutic dose of anticoagulants that he'd been maintained on since his stroke in November.

It turns out that after they intubated him yesterday his left lung function improved significantly and what they thought was a large amount of fluid turned out to be much less so (apparently fluid and collapsed-lung are hard to distinguish between on an x-ray). So they decided to forgo the insertion of a drainage tube and turned their attention to the clots. His first CT scan of the day was to check the blood flow through his chest, and once that came back showing things were better than expected they ordered a second one to check the flow through his head, thinking that his Glen circulation was being significantly compromised by a total or partial blockage of the returning blood (one of the symptoms we reported to them was Ford's recent and surprisingly striking episodes of "Glen-head," wherein his head takes on the colour of an eggplant and his lips turn a dusky whitish-blue).

I'm a little unclear about the next bit of information, as I was at home when Christa called me to say how bad things had gone, but it sounds like they did see multiple clots in his upper vasculature. Whether those were worse or different from the ones that had been diagnosed in Toronto, I'm not sure. So amidst the flurry of resuscitation they started him on an infusion of Activase, which is a "clot buster" drug that works to actively and aggressively break down blood clots, as opposed to the Enoxaparin and Heparin that Ford usually gets, which are supposed to passively prevent new clots from forming. The worry here, which is similar but more acute than with Heparin, is that it could prompt hemorrhaging throughout his body, most seriously in his head. But at the moment there isn't any sign of that and Ford is "stable" (relative to his constant un-stable condition). They even felt confident enough to wheel the crash cart back about 6 feet from his bed and roll him onto his tummy to sleep (a manoeuvre requiring 5 pairs of hands).

While I'm growing daily more attuned to the nuances and subtleties of modern medicine, and know that it's a tricky business at best to confidently manage a patient as messed up as Ford, I've been day-dreaming about sitting in on a phone conversation between Dr. Human in Vancouver and Dr. Dipchand in Toronto, where Dr. Human simply says:

Anne, WTF!!?

...and then hangs up.

Pure, prime-time drama.


And so, while things suck about as much as they have sucked so far, I thought I'd back-peddle a bit here and share a couple photos from the last few days in Toronto:

Ford spread out amongst the luggage. Us wondering which bag will have enough space left to pack him in.

Ford Couture - fashionista, living up to his name in H&M with Nana Rhonda asking his opinion on a Star Wars number. The first place we went after getting him out of the hospital was the mall. Talk about out of the frying pan and into the fire. Sad, but true.

from arrival to admission

Ford did alright on the flight back to Vancouver. It was a little awkward getting him and all his medications and bags through security, but was more or less uneventful. He was supplied with oxygen for the flight and slept most of the way.

We took him to the cardiac clinic at Children's hospital on Monday to check in and let them have a look at him (a 5 hour look), and then had a quiet evening at home. Everything seemed ok.

This morning we got a call from the cardiac nurse saying that she and Dr. Human had been rethinking some of the test results they got for Ford, primarily the chest x-ray, which showed some fluid building up around his left lung. Since he'd had a restless night, sounded a little congested, and was working a bit harder to breath, we decided to bring him in to be monitored for a couple of days thinking he might need a little extra help getting rid of the accumulating fluid.

So we wound up back in the ICU this afternoon, where Ford promptly nose-dived, with his sats dropping to the 40s, his respiratory rate climbing to 110, and his head getting purpler and purpler. They decided to repeat the chest x-ray, gave him an echo and an ECG, mulled the possibility of putting a drainage tube into his chest, ordered a CT scan for tomorrow morning to check for any new or old clots that could be blocking up his circulation, and intubated him - "to make things easier for him."

He's back on morphine, back on midazolam, back on rocuronium, back on a breathing machine, and back in nearly the exact situation he left Vancouver in 6 weeks ago, sparking his team here to mutter more than a few acerbic remarks on the quality of care he received in Toronto, like "Why did we send him on a 10, 000km trip to get a G-tube and a few diruetics?"

Today

today we are flying home to vancouver.

Ford was discharged on friday and has been doing as well has he ever has. we all have been sleeping better away from the constant interuptions of the hospital, that's for sure.

with better health comes commercial airlines - no private jet for Ford this time. i don't think the reality has hit him yet - it will somewhere in the line up for security i think...

happily, the david foster foundation, who pays for our flights, got us a third seat, so we'll have space to juggle Ford and all his accessories, including oxygen for the flight.

bon voyage.

Tube-free face for the first time in 8+ months!

when aunt and uncle troll came to town

daily nick and i both say "we should update the blog - do you want to do it?" and neither of us have said yes in a week, but not updating starts to feel like missing a deadline and we begin to hear the chirps of our followers wondering what's happening now...

Ford did get his GJ tube put in on thursday, which went well, though post-op he promptly developed pneumonia. by friday evening he had slept only 1.5 hours in 12 and was beside himself in discomfort, de-satting and breaking his own record with a fever as high as 40.4. our friends Jean-Guy and Christine arrived to visit on thursday and their presence got us through the weekend as the four of us took turns trying to sooth and be present with Ford. by saturday night they moved him to a step down room so that there would be an ever present nurse to watch his laboured breathing and irregular heart rhytms. assesments from CCU concluded that he did not have to be moved back to ICU, which we were glad for, and by last night, monday, he was well enough to go back to a private room. his fevers are less frequent - we actually had to put a blanket on him yesterday instead of him being naked on ice for days - and his breathing improved.

with Ford in the step down room, Nick and I got to sleep in the same place for two nights which was great, and we even had a movie and drinks date while Jean-Guy and Christine (aka Aunt and Uncle Troll, the reason for which I will save explaining for some other time) stayed with Ford and increased his vocabulary with french and flemish songs (fais dodo is my new favourite thing to say).

though he no longer has an NJ tube in his nose, he is on oxygen so his face is still obscured - no official unveiling yet!

we won't head back to vancouver until he is recovered from the pneumonia...

you don't get the full effect, but here is the GJ (red cap) and bandage on his belly:
and from a recent visit with Susan, Adam and Rudi!

happy new year

Nick ended up not going home for the week. he made it to the (what we neglected to consider insanely packed with crazy holiday travellers) airport, but there was a problem with the credit card that booked the ticket. David Foster Foundation (who pays for our accommodation and transportation - thanks Celine) booked the ticket directly, and as it was 5am in BC, we could not get ahold of our contact person to remedy the situation. Nick waited fruitlessly in several line ups before giving up and coming back to the hospital.

which is ok. when we booked his visit home, it was when we thought we'd be here for months. but this week we found out they're planning, as long as everything stays on current course, to send us home mid-january. so Nick's studio can wait until then and i didn't have to swing a week at the hospital on my own.

it also meant we got to spend new years together, the three of us and our dear friend Myia. after pulling his NJ out a few inches, Ford had a celebratory abdominal x-ray and us grown ups had root beer and watched fireworks outside our window.

Ford is scheduled to get a GJ tube (it was going to be a G tube, now we're back to going for a GJ) on thursday. after a few days to make sure that went well - they'll transfer us back to Children's Hospital in Vancouver.

huh.

happy new year!