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 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...
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.
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.
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...
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.
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.
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.
ADVERTISTMENT: looking for a place to stay in Vancouver? we are seeking someone to house-sit/sublet 3 bedroom apartment near commercial drive. it comes with a cat. 3-6 month term.
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.
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.
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.
Posts
