We woke up this morning to a call from the NICU saying Vancouver was 'on their way' and that Ford would be getting prepped for transport and shipped back to BC in 2 hours. That was 7:30am, so it could be as soon as 9:30. We are frantically getting ready what we can - there is only room for one of us to fly with the transport team. And no room for bags! So while Christa and Ford should be back on the West Coast in a matter of hours, I will be lingering in Edmonton for another day or two to pack our stuff, clean our room, bid farewell to family and friends here, and then try to let Westjet board me with about 5 times my body weight in excess baggage. We seem to have accumulated alot of 'stuff' while here.
Ford is being transferred to the NICU at BC Children's Hospital (we complained a bit about that) but he should be out of intensive care soon and will still spend a few more weeks in a less critical ward being weaned off of his narcotics and onto his food (he still can't tolerate anything in his stomach). If all of that goes smoothly then we should have him back home soon.
BC family and friends get your visitor-passes ready, this little circus is coming to town! We are so excited.
Saturday, June 27, 2009
Friday, June 26, 2009
Homeward Bound (I wish I was)
Every day's an endless stream of cigarettes (not so much) and magazines... and every stranger's face I see reminds me that I long to be... blah blah blah.
We were told on rounds a few days ago that Ford was good to go. While there are still several steps left in his recovery/prep for heart surgery #2 he no longer needs to be in the intensive care unit. Calls were made 'upstairs' to the pediatric floor for a bed, but none was available. Vancouver was called on Wednesday and there was a flurry of excitement as the admitting nurses came and went all morning pulling different parts of his chart to fax to BC Children's Hospital, Dr. Narvy spent some time dictating Ford's condition and current treatment plans into a little voice recorder and we were knotted with pensive, anxious energy. But that was two days ago and all we've heard since is: still waiting. I'm thinking that would be a good slogan for Hospitals across Canada - Edmonton's Stollery Children's Hospital: Still Waiting, etc. It has definitely been the major refrain throughout our stay here. But I guess that's just how it goes.
Ford's been developing more of a personality over the last few weeks as well as a violent gag reflex. These days he seems to spend most of his days sleeping and trying to vomit/vomiting. We're not sure why he's so prone to hurl, but he doesn't seem to be 'sick' in any real sense. Lately, as he is once again IV free, we've been able to dress him, and we are really enjoying the recurrent pattern of: undress, change diaper, dress, vomit, undress, change diaper, dress, vomit, etc. Oh the joys of a slightly normalized parenting experience. Since it is so much easier to pick him up, we've been ruthlessly cuddling him and finding it harder to leave him alone. We stayed with him until midnight last night, trying in vain to get him to stop fussing and go to sleep - rocking, patting, bouncing, swaying. After hitting a wall the nurse kindly offered to drug him and we, having no strength left to argue, agreed. Here's hoping we get to take a bottle of Chloral Hydrate home with us.
So we're just hanging out playing the waiting game, fingers crossed that Ford stays stable and all the baby bed-hogs in Vancouver get well soon so we can get home.
We were told on rounds a few days ago that Ford was good to go. While there are still several steps left in his recovery/prep for heart surgery #2 he no longer needs to be in the intensive care unit. Calls were made 'upstairs' to the pediatric floor for a bed, but none was available. Vancouver was called on Wednesday and there was a flurry of excitement as the admitting nurses came and went all morning pulling different parts of his chart to fax to BC Children's Hospital, Dr. Narvy spent some time dictating Ford's condition and current treatment plans into a little voice recorder and we were knotted with pensive, anxious energy. But that was two days ago and all we've heard since is: still waiting. I'm thinking that would be a good slogan for Hospitals across Canada - Edmonton's Stollery Children's Hospital: Still Waiting, etc. It has definitely been the major refrain throughout our stay here. But I guess that's just how it goes.
Ford's been developing more of a personality over the last few weeks as well as a violent gag reflex. These days he seems to spend most of his days sleeping and trying to vomit/vomiting. We're not sure why he's so prone to hurl, but he doesn't seem to be 'sick' in any real sense. Lately, as he is once again IV free, we've been able to dress him, and we are really enjoying the recurrent pattern of: undress, change diaper, dress, vomit, undress, change diaper, dress, vomit, etc. Oh the joys of a slightly normalized parenting experience. Since it is so much easier to pick him up, we've been ruthlessly cuddling him and finding it harder to leave him alone. We stayed with him until midnight last night, trying in vain to get him to stop fussing and go to sleep - rocking, patting, bouncing, swaying. After hitting a wall the nurse kindly offered to drug him and we, having no strength left to argue, agreed. Here's hoping we get to take a bottle of Chloral Hydrate home with us.
So we're just hanging out playing the waiting game, fingers crossed that Ford stays stable and all the baby bed-hogs in Vancouver get well soon so we can get home.
Monday, June 22, 2009
Vocal warm-ups
Forgot this one. He's still got a pretty weak voice, but he tries his best to sing along with Mum (note the soulful "I'm so into this song" eyes).
Pictures!
Here are some photos from the last few days which represent the transition from CPAP, to pre-diaphragm-op intubation, to the post-op extubation (which happened early this morning). They are unfortunately in no particular order...
Here's me watching the monitor instead of Ford. We have come to know him best as a series of wave forms, alarm chimes, and rapidly fluxuating biometric statistics. He is our little posthuman. This is about a day before his diaphragm operation.
Today he was extubated to a new breathing apparatus called the High-Flow Nasal Cannula. The staff is getting wise to his hate of the CPAP and decided to cut him some slack with this much less invasive device which he seems to tolerate very well. If he copes with this it should be the last kind of respiratory assitance he gets.
Here he is in Christa's arms. Post-op day 3. He was quite alert and even seemed happy.
Another happy face and a good look at the nasal cannula. We are pleased to finally be able to see so much of his face!
Intubated again, most likely pre-diaphragm-op... I think he's got Christa's mouth.
Family!
Here's me watching the monitor instead of Ford. We have come to know him best as a series of wave forms, alarm chimes, and rapidly fluxuating biometric statistics. He is our little posthuman. This is about a day before his diaphragm operation.
Today he was extubated to a new breathing apparatus called the High-Flow Nasal Cannula. The staff is getting wise to his hate of the CPAP and decided to cut him some slack with this much less invasive device which he seems to tolerate very well. If he copes with this it should be the last kind of respiratory assitance he gets.
Here he is in Christa's arms. Post-op day 3. He was quite alert and even seemed happy.
Another happy face and a good look at the nasal cannula. We are pleased to finally be able to see so much of his face!
Intubated again, most likely pre-diaphragm-op... I think he's got Christa's mouth.
Family!
Sunday, June 21, 2009
Familial scarrification and the breakfast hang-over
It's been almost 48 hours post-diaphragm-op and Ford is still hanging in there. His new incision runs along the bottom of his ribs, slightly curling around his back. Once healed he should have what looks like a poorly articulated "L" carved across his torso which is great props to Lakowskis everywhere. Way to represent, Ford.
He came back from the OR with another chest tube to drain excess fluid, but that was removed less than 12 hours after they put it in. He is once again being kept floored with a morphine infusion, so the IV tree/pole has come back. He hasn't been too alert since he came back, he's been sleeping quite a bit. When he does open his eyes it's fleeting and he looks quite distressed. Still, we are told he's doing well. They restarted his feeds yesterday at 5ml/hr but he is already back up to 17ml/hr and should reach 'full feeds' sometime tonight/tomorrow. As Christa noted, he was intubated shortly before going to the OR and he's still on the vent. But they are weaning it pretty quickly and he's already reaching it's lowest settings. As they pull back on the morphine he's starting to take more breaths himself and all that remains is them turning the frequency-of-breath that the machine gives him down. We were told they will extubate him early tomorrow if he continues to do well. But, as past instances have proven unsuccessful I am not holding my breath (pun intended).
Yesterday we got the chance to look at a collection of his x-rays taken over the last few weeks and the pre/post pictures of his diaphragm were pretty startling (this is the first time we've seen the x-rays, usually we are just told what they show). In the pre-op pic, with very little description of the visible anatomy, I could clearly see the extent to which his diaphragm (or rather his stomach, which was being pushed pretty high up into his rib cage) was squishing his left lung and in turn how enlarged and swollen his heart had become. In the post-op pic, which was only taken about 2 hours after he came back, everything had returned to its normal position and his heart already look smaller/less swollen.
Here's hoping the next week goes well.
Christa has us eating pretty well these days, lots of complex carbs, fruit, veggies, legumes, fish, etc. The Ronald Macdonald House has pretty amazing kitchens (and 3 of them to boot) so I am indulging in the pleasures of cooking dinner most nights, I love it! But this morning we partook in the house's complimentary 'Father's Day Breakfast' and I fell off the wagon with heaps of sausage, bacon, fried eggs, pancakes, potatoes, and coffee. I hope all you dad's out there are in a similarly pleasant state of nauseous post-breakfast hang-over.
Happy Father's day/Summer Solstice
He came back from the OR with another chest tube to drain excess fluid, but that was removed less than 12 hours after they put it in. He is once again being kept floored with a morphine infusion, so the IV tree/pole has come back. He hasn't been too alert since he came back, he's been sleeping quite a bit. When he does open his eyes it's fleeting and he looks quite distressed. Still, we are told he's doing well. They restarted his feeds yesterday at 5ml/hr but he is already back up to 17ml/hr and should reach 'full feeds' sometime tonight/tomorrow. As Christa noted, he was intubated shortly before going to the OR and he's still on the vent. But they are weaning it pretty quickly and he's already reaching it's lowest settings. As they pull back on the morphine he's starting to take more breaths himself and all that remains is them turning the frequency-of-breath that the machine gives him down. We were told they will extubate him early tomorrow if he continues to do well. But, as past instances have proven unsuccessful I am not holding my breath (pun intended).
Yesterday we got the chance to look at a collection of his x-rays taken over the last few weeks and the pre/post pictures of his diaphragm were pretty startling (this is the first time we've seen the x-rays, usually we are just told what they show). In the pre-op pic, with very little description of the visible anatomy, I could clearly see the extent to which his diaphragm (or rather his stomach, which was being pushed pretty high up into his rib cage) was squishing his left lung and in turn how enlarged and swollen his heart had become. In the post-op pic, which was only taken about 2 hours after he came back, everything had returned to its normal position and his heart already look smaller/less swollen.
Here's hoping the next week goes well.
Christa has us eating pretty well these days, lots of complex carbs, fruit, veggies, legumes, fish, etc. The Ronald Macdonald House has pretty amazing kitchens (and 3 of them to boot) so I am indulging in the pleasures of cooking dinner most nights, I love it! But this morning we partook in the house's complimentary 'Father's Day Breakfast' and I fell off the wagon with heaps of sausage, bacon, fried eggs, pancakes, potatoes, and coffee. I hope all you dad's out there are in a similarly pleasant state of nauseous post-breakfast hang-over.
Happy Father's day/Summer Solstice
Friday, June 19, 2009
further repairs
Well, we tried. Or rather Ford did. As he's been getting progressively worse this week - which is to say his heart rate, respitory rate, oxygen needs, co2 and lactate levels have been steadily climbing while his weight was dropping - it's been decided that he needs the surgery on his diaphragm. The left side, which remains paralyzed, is up rather high making it impossible for his left lung to fully expand. The lung, being squished, is in turn squishing his heart - thus the below mentioned failure. So they will "tack" down the left side of the diaphragm and his organs can regain their rightful personal space.
The decision was made yesterday and we were told the surgery would happen sometime next week. But when we arrived this morning, there had been a cancellation and Dr. Rebeyka can do the procedure this afternoon. So Ford has been without food so far today and was re-intubated at 1pm. Watching the intubation is tough. But at least he'll get some rest from working so hard to breathe in the few hours before going to the OR.
The recovery from this procedure should only be a couple days. Then when we try cpap for the 4th time, it should be a lot easier for him.
The decision was made yesterday and we were told the surgery would happen sometime next week. But when we arrived this morning, there had been a cancellation and Dr. Rebeyka can do the procedure this afternoon. So Ford has been without food so far today and was re-intubated at 1pm. Watching the intubation is tough. But at least he'll get some rest from working so hard to breathe in the few hours before going to the OR.
The recovery from this procedure should only be a couple days. Then when we try cpap for the 4th time, it should be a lot easier for him.
Wednesday, June 17, 2009
Catch 22 of the ICU
I'm starting to think they're strategically dealing their psychological one-two punch combos with the same kind of careful precision as their dosages and palpations. Not a handful of hours after I posted the last blog the hospital called us to say that Ford had been fighting a fever and his temperature was spiking dangerously high. As a cautionary measure they had sent samples from his incision, blood and urine to test for infection and started a course of intravenous antibiotics. The following morning, still waiting for news of an infection, they considered his symptons as greater than usual signs of withdrawal and so upped his sedatives. After a restless and troubled day, alternating between heavy, warm bundling and unwrapped cooling periods covered with cloths soaked in cold water to keep his temperature in check, Ford finally got some sleep.
This morning we were told his symptoms were less likely related to withdrawal or infection and more likely the early signs of heart failure.
While its likely less dramatic than it sounds, hearing them deliver those particular words was jaw-dropping and gut-twisting. In their considerations is the fact that Ford was supposed to have already transitioned from his infusion of Milrinone, which is a blood pressure medication that relaxes his vascular system so that the blood can move throughout his body, especially to his peripheral organs and limbs, with less difficulty (he's been on it as long as he's been in the NICU), to an oral medication called Captopril which would basically do the same job without an IV. They had been trying it out on him about a week ago, giving him the smallest dose they could, and decided to stop after noticing it was causing quick, sharp drops in his blood pressure which he wasn't reacting very well to. They began to think he preferred having a slightly higher than normal blood pressure, so maybe he wouldn't need it.
When they removed his pic line they stopped the infusion or Milrinone before he had been completely weaned off it, and one particular problem with the drug is the body's tendency to react badily to having it quickly stopped. He was on a pretty small dose, but they still believe they moved too quick and so he's back on the infusion as a preemptive measure.
We're still unsure what the new course of action is going to be. This has set him back a few stages in his recovery but from what I understand they are simply going to switch tactics. Giving his heart a little more help will let them try to wean the CPAP again (which was turned back up yesterday to give him a bit more help with his breathing). Since there is still the outstanding issue with his paralyzed diaphragm and the potential surgery, they are going to try and resolve that before they see if his heart can cope on its own again.
I feel increasingly daunted by the circuitous and labyrinthian challenges Ford's been facing the longer he stays in the P/N ICU. When he was checked in all he had as a bum heart, certainly it was an otherwise fatal condition, but now, after everything that's been done for him he's still got his bum heart (with a temporary fix to buy him some time), a paralyzed left-diaphragm, an addiction to opiates, a blood clot in his left leg, a compromised set of vocal chords as a result of prolonged intubation, and an emmaciated body that's been sliced and punctured and poked all over. While I realize there are side affects to every treatment he's recieved, and while I am also blown away at the talented and comprehensive juggling act the doctors perform in balancing all of this over a tiny little body, it is hard to accept that he is effectively a captive patient here, that orders for his care are doled out each day and we politely consent to them because we are basically ignorant, overwhelmed by the immensity of it all and only dimly aware of what is necessary and/or good for him. And through it all there are these moments where he opens his eyes and stares at us and we hold his hand and stare back and think look at this, look what we made, and look how strong he is... but if someone were to walk by and trip the power cord out of the wall he would be dead in a matter of hours.
That's obviously a bit melodramatic, and couldn't really happen either, but it's hard to not think that way when the ups and downs come paired so close together. We often end up feeling pretty blue when the day before we felt like a million bucks.
This morning we were told his symptoms were less likely related to withdrawal or infection and more likely the early signs of heart failure.
While its likely less dramatic than it sounds, hearing them deliver those particular words was jaw-dropping and gut-twisting. In their considerations is the fact that Ford was supposed to have already transitioned from his infusion of Milrinone, which is a blood pressure medication that relaxes his vascular system so that the blood can move throughout his body, especially to his peripheral organs and limbs, with less difficulty (he's been on it as long as he's been in the NICU), to an oral medication called Captopril which would basically do the same job without an IV. They had been trying it out on him about a week ago, giving him the smallest dose they could, and decided to stop after noticing it was causing quick, sharp drops in his blood pressure which he wasn't reacting very well to. They began to think he preferred having a slightly higher than normal blood pressure, so maybe he wouldn't need it.
When they removed his pic line they stopped the infusion or Milrinone before he had been completely weaned off it, and one particular problem with the drug is the body's tendency to react badily to having it quickly stopped. He was on a pretty small dose, but they still believe they moved too quick and so he's back on the infusion as a preemptive measure.
We're still unsure what the new course of action is going to be. This has set him back a few stages in his recovery but from what I understand they are simply going to switch tactics. Giving his heart a little more help will let them try to wean the CPAP again (which was turned back up yesterday to give him a bit more help with his breathing). Since there is still the outstanding issue with his paralyzed diaphragm and the potential surgery, they are going to try and resolve that before they see if his heart can cope on its own again.
I feel increasingly daunted by the circuitous and labyrinthian challenges Ford's been facing the longer he stays in the P/N ICU. When he was checked in all he had as a bum heart, certainly it was an otherwise fatal condition, but now, after everything that's been done for him he's still got his bum heart (with a temporary fix to buy him some time), a paralyzed left-diaphragm, an addiction to opiates, a blood clot in his left leg, a compromised set of vocal chords as a result of prolonged intubation, and an emmaciated body that's been sliced and punctured and poked all over. While I realize there are side affects to every treatment he's recieved, and while I am also blown away at the talented and comprehensive juggling act the doctors perform in balancing all of this over a tiny little body, it is hard to accept that he is effectively a captive patient here, that orders for his care are doled out each day and we politely consent to them because we are basically ignorant, overwhelmed by the immensity of it all and only dimly aware of what is necessary and/or good for him. And through it all there are these moments where he opens his eyes and stares at us and we hold his hand and stare back and think look at this, look what we made, and look how strong he is... but if someone were to walk by and trip the power cord out of the wall he would be dead in a matter of hours.
That's obviously a bit melodramatic, and couldn't really happen either, but it's hard to not think that way when the ups and downs come paired so close together. We often end up feeling pretty blue when the day before we felt like a million bucks.
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