diaphragm plication redux

the longer we leave updating the blog, the harder it is to keep straight all the details of recent events, and the more daunting the task becomes. at least for me. nick's spare time this week is devoted to a new sculpture he's working on so, in his stead, i am updating lilsesame, though i prefer his writing over mine!

by end of day when nick wrote the most recent, somewhat bleak post, it seemed things were brightening. that afternoon, they discovered the cause of Ford's fever was in fact a urinary tract infection. they changed his antibiotics to gentamicin and it seemed to be very effective - he hasn't been febrile since.

meanwhile, the ballooning of his aorta seemed to have helped his breathing. two different people told us he could soon be off the high flow and we'd likely be back upstairs monday or tuesday.

however, they have not been able to wean the high flow and on wednesday they did an ultrasound of his diaphragm as the left side appeared to be moving again. it showed the plication he had on june 19 has somehow come undone. Dr. Human, cardiologist, called Dr. Ross, surgeon in Edmonton, for his thoughts on the matter. of the few times Edmonton has seen post-heart surgery diaphragm paralysis that needed plication, they have, a couple times, seen it come undone and need to be re-plicated. he suggested they do that for Ford.

thus, tomorrow, he is going to have that surgery. again.

the first time he had it, it very quickly made a huge difference in his breathing. we hope that will be the case again. tacking down the diaphragm means his left lung can fully expand, which, in turn, has been putting pressure on his heart. it also will affect his feeds too - while behaving paradoxically, his stomach is not in the right position.

if the surgery doesn't make enough of a difference for him, there was talk of moving up the Glen (part 2 of the 3 stage modification Ford's heart is en route for) from 6 months old, to 4 months. let's face it, Ford just isn't doing as well as anyone would hope. it's been 10 weeks since his Norwood (part 1) and the long-end of recovery time for every other HLHS baby is 8 weeks. statistically. Ford is doing his own thing, and we love him for it, but it's hard not to compare and feel like we should be home by now. indeed, it's what we were looking forward to 10 weeks ago.

BUT, the re-plication could do the trick and we could be home in 2 weeks and his Glen could still be a few months away. we shall see!

right now, as i type, he is being intubated. they want to optimize his lung function pre-surgery. while he was intubated last friday for the cath, his left lung, which has had some collapse, opened up fully. once extubated, it collapsed again. so for the next 24 hours he will breath as optimally as possible, which is good.

it is, however, very hard to know he is being intubated, and it'svery hard to see. it means he won't be able to make any noise and it will also make it very difficult to pick him up. he will be kept sedated as it is uncomfortable to be ventilated. it is short term - he should be extubated over the weekend. but it means he looks like he did when he was much more sick, and those recent memories are painful to revisit.

so the plan is: friday, surgery. saturday or sunday, extubated to high-flow. monday or tuesday, hopefully wean to low flow. by end of next week.... off the low flow and back upstairs? that will depend on how he responds to this diaphragm fix.

All engines full reverse

Ford has not been doing very well since coming back from the cath lab, but it is still unclear what the problem is.

He's been fighting a fever ever since, which drifts between 40.2 and 38.5. Despite all the tests for viruses and infections so far coming back negative he is being treated with antibiotics, and getting alternating doses of Tylenol and Advil every 2 hours. Yesterday nothing seemed to be bringing him down so we packed bags of ice around his head and stripped him down. After several hours of that it fell to 37.7, which is still on the higher side of normal. The funny thing was that he didn't seem to be behaving in a distressed way. A little fussy, but not much more than usual. Not too sleepy or dopey. He was actually mostly just lying their calmly, looking around, with his head encased in ice. Almost comical to watch if I wasn't so freaked out.

The doctors initially seemed unconcerned because Ford was placed on some kind of heated blanket during the procedure. Also, apparently it isn't unusual for kids to come back with a higher temperature after any kind of operation, their body reacts to the invasion. But it has been lingering like this for a couple days now.

Then they thought it could be a reaction to the dye they put into his blood for the CT scans they did to check their work - but he had a CT scan a few weeks ago and had no reaction then.

Then maybe there was an infection or other trauma in his heart, but echos and x-rays all show his heart as being ok, even better off after the ballooning of his aorta.

Then they decided to draw more blood to test for infection again, after the first round showed nothing.

So we are just waiting and hoping that they either figure out what's wrong and have a treatment available, or that it just blows over and he gets better. But while we do that, Ford is being subject to all the precautionary measures of the ICU. He's got an IV in his foot (which took 11 tries to get), then as a back up they put one in his head, then as another back up, and more dishearteningly as a "longer-term option," they are putting a pic line in his arm. He's been on the high-flow nasal prongs for respiratory support as well. And yesterday, after several bouts of vomiting, they decided to put him back on continuous NJ (intestinal) feeds with an NG tube to drain his stomach. He hasn't looked like this since before we left Edmonton and their adage: "It's always two steps forward one step back" is wearing a little thin with me. He seems to be running in full reverse. This is one of those hair-pullingly frustrating moments to be in because early last week they had optimistically suggested that we would be discharged on Friday. And now they are gearing up for a long-term stay in intensive care.

scheduled

Ford is having the cardiac catheterization at 9am Friday morning. The procedure takes about 2 hours we're told - the first of which is getting anesthetized and intubated. Likely he'll be extubated before he comes back to the ICU, or he may need to stay on the ventilator for few hours. Post op, he may need some (only!) tylenol - this procedure is small potatoes compared to his open heart surgery! It still worries us, of course, but, like the plication procedure, we hope to see quick results.

We'll keep you posted.

Pseudonocardiaceae

Ford is being treated for a pneumonia even though it only sort of looks like he might have an infection in his lungs. He was initially put on the antibiotic Vancomycin as a preventative measure while they waited for bacterial and viral cultures to return, but after an initial round of results turned up negative they have decided to discontinue it and switch to Clarithromycin, which is used to treat pneumonia.

He seemed a little more himself today, crying while they poked and repositioned him. But his cry was weaker than we've grown used to hearing from him and was at times merely a sad whimpering. He still slept most of the day, and we are taking that (in addition to his growing protests) as a sign that he is on the mend, that the antibiotics have done the trick.

It was hard to watch him move back downstairs, especially-so as not a few minutes before I got the news I was happily calling family to arrange times to visit us in our luxurious penthouse suite. I had no idea that they were so concerned about his condition until I walked back in the door and was told we has going back 'downstairs'. He was put back on an IV drip, back on the high-flow nasal prongs, given a catheter, and started to look way too much like he did 4 weeks ago. Very disheartening.

Despite the general optimism that whatever bug was giving him additional trouble with his breathing is now on the way out, Cardiology fell upon us this morning to deliver their typically heartless assessment (heartless heart doctors - hahaha), proposing that he does in fact need to have his descending aorta 'ballooned' open via cardiac catheterization, which means more surgery. Apparently this can happen as soon as tomorrow morning, which we are planning for, but could be delayed a few weeks as well. I guess we are hoping it happens soon, so he can recover soon. And then maybe we can go home soon...

After weeks of having nurses and doctors ask us "does he usually breathe this quickly? does he usually struggle like this?" and us, accustomed to his general appearance, answering "yes, it's totally normal for him," I am glad that they finally decided that it might not actually have to be his base line, that he might be working harder than necessary, and more importantly that there might be something they can do about it. Regardless of the fact that this in yet another unexpected, invasive procedure requiring intubation, anaesthesia, and prodding at his heart, I am coming to accept that Ford is not going to be the kind of kid that can just ride out a cold, or cope with a little extra strain and pull through unaided, that he will probably be more comfortable hopped up on drugs and swaddled in plastic tubes than he might be playing shoeless in the dirt.

I'm also hoping I'm wrong.

back in the ICU

The last two days have not been good.

On Monday, our nurse Tara noted an increase in Ford's work of breathing from morning to night - meaning his resp rate had gone up, his head was bobbing and he was indrawing a lot. By yesterday morning when conditions hadn't improved, it was a topic of great debate at rounds.

There are four things they look for when they see this kind of behavior. I can't remember two of the four as they, at present, don't apply. The two we are dealing with is heart (mal)function and infection.

So Tuesday morning there was a line up of doctors and technicians out our door - he had an xray, an echo and blood work. The last is always traumatic for all invoved. Ford is a "hard draw", meaning it's hard to get blood out of him. They generally only do foot pokes, but the tech often has to poke more than once and then "massage" the leg in an effort to squeeze more blood out. Ford, understandably, doesn't like this so one or both of us, during the process, are holding him or holding him down, and holding his soother in - if not for comfort, to muffle the loud crying. Once it's over, he's fine. But it's 5 minutes of hell for everyone!

By the time the tests were complete, an intesivist from ICU came up to see him and said she'd like to take him back downstairs and put him on to high-flow (breathing support) again while they figure out what's causing the work of breathing.

This was dissapointing, for obvious reasons I'm sure. We'd quite settled into our room on 3M and Nick had to make a couple trips to the car to move us out. And just this past saturday, Dr. Sanatani had said "if things go smoothly, you could be going home at the end of this week". Well this is what he'd give as an example, I'm sure, of not smoothly. The steps we would have been taking this week - working on bolus feeds and oral stimulation along with our training of administering his drugs, have all been put on hold.

Which brings us back to what is wrong. We don't know exactly yet. But the general consensus is that he has some kind of "bug". There are shady patches in his left lung on his chest x-ray. Which could just be fluid, could be infection, but waiting to find the results of the blood and urine cultures could lead to serious illness if not treated pre-emptively, so they've started him on antibiotics as if it were a respirtory infection.

The antibiotics can therefore be both a diagnosis and a treatment - if he gets better in a day or two, the antibiotics worked and we know it had to have been a virus. But since they started the treatment at the same time as they started taking samples to culture, we may not know what virus he had. A moot point really.

Today he is quite obviously under the weather. They started a second antibiotic after we noticed extreme listlessness. Recall a few paragraphs ago the description of the blood work experience? Well today they had to do the foot poke and a vein draw. He didn't even wake up for the foot poke/massage. He woke up for the vein poke, but just slowly blinked his foggy eyes at us. Yikes. We liked it better when he screamed through it all.

For a few waking moments he blinked, blew bubbles and whimpered. Heartbreaking! He has otherwise slept all day, which is good. Hopefully what ever he is fighting in there is giving in to rest and drugs.

Meanwhile, there has been growing concern about narrowing in his aortic arch. The recent echo shows that, since the CT scan, the narrowing has increased slightly, as has the speed of the blood flow (a rate that is supposed to be 150 per was 200 and is now 300). This is also evidenced in the very weak pulses in his feet. This narrowed aorta is also compromising his breathing, though after the super drowsy-ness of today, I don't think anyone is disputing that he has an infection. But once that clears up, the aorta problem remains. Dr. Human thinks Ford will have to have an aortic catheter balloon inserted to clear the blockage. This procedure is done through the femoral artery. This is yet another detour in Ford's recovery.

How did this narrowing business happen you wonder? During the Norwood procedure Ford's aorta was enlarged by grafting tissue from his pulmonary artery on to it. The narrowing is caused by scar tissue from that graft.

Deb, the "ICU liason" told me, when I said he had yet another infection, to "get used to it". Our poor Ford is so complex and fragile - and thus so susceptible to little colds or flus and they can cause a lot of trouble for him. Which is to remind everyone out there to wash your hands! We must be vigilant!

We must also now return to Ford's bedside. I hope our next post speaks of return to rooms with windows and clear lungs. A bientot.

the full length of Ford lying down

is 21" and looks something like this:

ford sleeping...
note in this one the amount of "free" face - only one tube!

here his birdies (of the massive plastic mobile) watch over him. he does, p.s., LOVE the mobile and follows the moving birds intently, and endlessly, when it's on.
napping in the sun in the nursing pillow:


On another note, Nana Rhonda gave Ford this chubby bear to inspire him to gain weight. Here's "Chubba Bear" in the Sesame hat (Ford's head is getting too big for the hat himself!):

Bolus Feeding, Ghetto Echo

Christa and Philippa trying to assemble a honkin' plastic mobile. We swore we'd never buy a plastic toy for Ford, but after the last two months they seem the lesser of many evils. If it helps assuage your conscience to know that it's second hand... great.

Ford has made the transition from continuous feeds to bolus feeds and so far he seems to be tolerating it. So now he gets a slightly compressed dose of feeds over two hours with one hour off. Eventually he will be feeding more or less like a normal child with several hours between meals, the only real difference being that he still gets it squirted up his nose.

Though it may seem like a small change, the hour without food has opened up some exciting new possibilities for Ford. First off, the cardiac occupational therapist, Astrid (Yes, Dr. Human and his sidekick Astrid - like a superhero team from the 1950s) came by with some suggestions for getting him used to oral feeding. Christa is now encouraged to let him try breastfeeding towards the end of his 'hour off NG feeds' with the hopes that he will be hungry enough by then to want it for more than therapeutic stimulation. Apparently this morning he took to it like...a baby to the breast? and that is an encouraging sign. He can try it for 10mins a stretch up to 3 times a day and hopefully it will not only help him develop his suck/swallow reflex but his overall stamina as well. Since his cardiac output is so limited, small efforts generally exhaust him (he is often coated in sweat) and little workouts like this will certainly help him gain some strength. The other great new adventure is that while his feeds are stopped Ford has nothing that needs to be attached to him. Aside from the leads (which are attached to a clunky wireless device that was probably built in the 70s - god knows what kind of radiation it's clouding him in) and his sat probe, which is easily unplugged, we can pick him up with ease and take him on short walks around the ward. The ward as a few rooftop patios and these sunny afternoons are tempting us outside. We got the go ahead to take him out with us for some play time in the sun (more likely shade) and the thought of taking him outside for the first time is pretty exciting.

Otherwise, there's not much going on. Ford had a routine echo ordered yesterday and I was expecting the usual - the sleak, humming tanks they push around, with their anthropomorphic, round softness and matted, minimalist off-white luster. But the tech walked in with what looked like a steel tea trolley with a laptop on it, an impressive tangle of wires dripping out its back. Compared to what we're used to it looked more than a little ghetto and I said so, perhaps putting my foot in my mouth as she seemed startled by the comment.

Later, after I apologized, it turned out that she just didn't 'get it', didn't know what 'ghetto' meant. So for those of you who are also mystified, I will provide a definition from the dictionary of urban slang:

	ghetto
	1. (n.) an impoverished, neglected, or otherwise disadvantaged residential area of a city, usually troubled by a disproportionately large amount of crime 2. (adj.) urban; of or relating to (inner) city life 3. (adj.) poor; of or relating to the poor life 4. (adj.) jury-rigged, improvised, or home-made (usually with extremely cheap or sub-standard components), yet still deserving of an odd sense of respect from ghetto dwellers and non-ghetto dwellers alike

If you will refer back to entry #4, you will note that I meant it with respect, albeit an 'odd sense of respect.'

Eventually we had to go downstairs for a real echo because the substandard images didn't show a clear enough picture (whoever had the idea to jury-rig one in the first place needs to go back to school) and the same tech had to swallow her pride and try again. As I lay Ford down on the table for his scan, she commented that he only had one sock on (Ford has the best socks - thanks to everyone who bought him/passed on socks, you rock), and maybe he'd lost it on the way down? No, I said, We are just trying to raise him as white trash.

She said she liked me.

Back by popular demand - The Ford Taurus!

I like the lighting in this one. It's daylight. Aside from the flight from Edmonton to Vancouver, throughout which he was sedated, Ford has not seen daylight. Our new room has a big, bright window, and he was definitely stunned by the brilliance of the light. He had a hard time tolerating it, but couldn't look away.


Cross-eyed!



Ford as we prefer to present him.





Ford as he prefers to present himself.




New digs with internet. Christa is skyping with Ford. We got him hooked up to a speech synthesizer so he can communicate to us Stephen Hawking style. You ought to hear his postulations for the existence of life throughout the universe. He's quite bright and very persuasive.


But sometimes he gets tired and needs to sleep.



Sesame Mucho hat, hand knitted by Lynne! Thanks Lynne! We love it, but Ford seems a little skeptical.



Here he is modeling it with his trademarked variation on the Zoolander stare. Definitely a ladies man.

Tour d'hôpital

I read the other day that the French were just declared the world's worst tourists (http://www.euronews.net/2009/07/09/french-named-as-world-s-worst-tourists/). I think I'm linking to this otherwise banal article because I occasionally feel like we have had something like the role of the tourist thrust onto us while here at the hospital. And I feel like we assume this role and wholeheartedly become tourists. Badly behaved tourists. There are, of course, no end to the similarities - most people speak to us in a foreign language and we stumble through our feeble attempts to respond to them in kind. But when we fail to make sense of each other we demand they speak to us in a language we can understand. The food often looks a little strange and suspicious. We always feel poorly dressed by way of comparison (folks around here really know how to work the scrubs). We live out of our suitcases, are perpetually lost and, in keeping with the spirit of Frenchfolk everywhere, we have yet to tip anyone.

Most exciting news: Ford is two months old! We took his NJ tube out to mark the milestone in style, to congratulate him on making it this far.

Ford was shuffled out of the NICU a few days ago as an influx of critical babies took precedence. He was moved down the hall to the PICU and we temporarily lost our private digs. But the PICU was experiencing a bit of a lull, with only a handful of babies sprinkled throughout their spacious 28 bed unit. It was certainly a calmer environment than the PICU in Edmonton, which seemed to be constantly in crisis. It was a relaxing few days with Ford staying supremely stable and relatively quiet.

There was one brief moment when his saturations dropped low and two nurses started anxiously pacing around his bed. An RT came running with the high-flow rig to hook him back up to oxygen and I had to plead a bit with them to just wait. This great doctor (Dr. Jenny, we call her) came by and sided with me to wait on him. I guess the tried and true strategy of an ICU is to intervene at the first sign of trouble rather than stand around waiting for patients to crash - it was clear that they weren't entirely comfortable doing nothing. But Dr. Jenny was pretty reassuring and stayed with us until she decided he was fine, despite what the monitor was saying, and left. One of the things that is both frightening and exciting for us is getting the chance to be with Ford without having to always know what his biometric readings are, without the alarms chiming as he regularly drifts in and out of their parameters. This was one of those moments where I was looking at him, so deeply and comfortably asleep, and he looked absolutely perfect, but the equipment was ringing off: danger, danger! Apparently when we are all in a deep sleep our oxygen saturation levels drop a few percentage points, so they were prepared to accept the episode as such, but were still hanging back waiting to pounce on him. After a while of him sitting pretty low I decided (very selfishly) to try and wake him up, which I did as gently as possible, and he almost instantly resaturated. I felt pretty vindicated and relieved, but also a little strange, a little cavalier, like what if there really had been something wrong with him and I had decided to just let it be and he'd gotten worse instead of better. Those are the sorts of situations we might get into at home with him that are the most frightening to think about.

Ford was moved upstairs to the cardiology ward this morning and we are once again in a private room. Only this time it's a deluxe private room with our own bathroom, sink, bed (for us as well as him), window, TV, Internet, etc. There is a kitchen in the hall and several other homely amenities. It's actually really amazing. We felt pretty great as we settled into our new life 'upstairs.' Ford is now officially out of intensive care and is being monitored a lot less. The nurses sit outside, down the hall, and only come by to give him his meds or if there is an alarm ringing off. We are now expected to do much more of the minute to minute care for him, which we have mostly already been doing (while we're there), with the biggest change being that they expect one of us to stay with him all night.

By way of example, shortly after he was moved in, a porter showed up and said: I'm here to take him down to x-ray.

Ok, I said, and backed away from the bed.

Who's going to carry him? Mom or Dad?

Carry him? Like, out of the bed? Downstairs?

Yes. We will unhook him.

Umm.. Ok. I'll carry him... ?

I know it sounds ridiculous, but I got to carry him in my arms around the hospital with nothing but his feed pump attached. We took a long, meandering route, and he seemed to drink it all in, staring wild-eyed at all the changing scenery. And I sat alone with him in the radiology waiting room and was approached by several people cooing: Ooo, look at the baaaabyyyyy! Ooo, what a cuuuuute baby! I guess it felt so much like I had imagined it would feel like to have a two month old in tow, out in the world, and it was oddly kind of amazing.

Then, of course, he was clamped and velcroed into a barbaric looking set of restraints, with his arms pinned up around his head, and he screamed and screamed while the radiologist manipulated what looked like the cannon on the death star into position above his chest and my freewheeling revere was brought crashing back to reality.

Still, all things considered, it has been a very good day.

So this is hopefully where we will stay until discharge. I would like to put out there that we can now easily accommodate visitors in larger groups, with their kids too (who were previously not allowed in). We are eager to show him off, to have him meet friendly new faces who are not there to administer some rare and unpleasant form of torture on him, and hopefully wean the suspicious and startled expression that he so often wears off his chubby little face. It's been a while since we've coaxed a smile out of him. Give us a call/write us an email anytime, we would love to see you all.

Knock, knock, knocking on a wooden door.

Well.

Christa is still a bit under the weather but definitely on the mend. It was only one nurse on one shift who told her she ought to go home and spare the hospital's staff and patients her cold, she's been able to see Ford every day since. I haven't gotten sick yet at all and Ford seems to be doing much better.

Today was an exciting day.

First off. There is some disagreement as far as his 'long term' stay at Children's is concerned, but it is mostly a bed dispute between the NICU and the cardiology ward upstairs. Neither of them seems to want to loose a bed to him. So while cardiology is saying he's fine in the NICU, he can stay there until he's ready to be discharged, the NICU is pushing to move him upstairs so they can use the bed for another baby.

In some ways he's better off in the NICU because someone is watching him all the time, but the down side is the cramped quarters and touchy nurses who panic at the slightest sign of a deterioration - and fail to give him the benefit of the doubt, which i think he really needs right now. Upstairs he'll get less attention but they will also give him a chance to prove that he can, in fact, cope with a few episodes of mild desaturation without going into cardiac arrest and spare him the trauma of being put onto CPAP as an unnecessary precaution. If he is ever going to get out of the hospital he's going to need to demonstrate his ability to cope on his own, without monitors and sensors, etc. So it's a mixed bag for us. Obviously we want him home, but obviously we don't want him home while he's still in a (relatively) fragile place.

In other news, the cardiologist on duty this week - Dr. Human (not to be confused with Dr. Vulcan) - made some changes this afternoon that seemed to stir the pot a bit, at least as far as the NICU nurses and neonatologists were concerned. He discontinued Ford's respiratory support and also requested his feeding be moved from NJ (intestinal) to NG (stomach). Since these are all things that need to happen eventually, we are happy they have happened. But Ford has had a hard time with both of them in the past and each time they tried and failed they seemed to temporarily set him back in his recovery. We are both wary-of and excited-for the moves made. So far things seem to be going really well. I should emphazise "so far" so I don't miss the opportunity to knock on wood. I think the longest he's lasted without breathing assistance is an hour, and its been about 10 now. He is doing quite well in terms of his oxygen saturation. His breathing is still a little quick, even at rest, but Dr. Human thinks that is just going to be the case with him, because he is fighting higher than expected pulmonary blood flow (via the shunt), on top of weak cardiac function, on top of cold congestion. He doesn't seem to be overly concerned.

As far as the feeding goes, Ford had progressed over the last two days to getting about 5-10mls of milk orally (via a syringe), which was basically therapeutic stimulation for his swallowing reflex, and the switch to his stomach (via continuous nasal drip) has gone really well. He hasn't had any regurgitations since they changed it over earlier this afternoon and he even had a big burp while Christa was holding him. If he continues to tolerate it through the night and into tomorrow they will try to transition him onto bolus feeds, which means getting larger, concentrated doses over shorter periods of time. These are the final things we need to resolve before he's let loose, so if they continue to progress this smoothly we might have him home sooner than we're expecting (which still might be a few weeks - knock wood). He is gaining charm, weight, and stamina, as well as a passionate tendency to scream and scream and scream. Go Ford!

muchos pictures

Ford's first time wearing clothes, in Edmonton still:


Working on oral stimulation:
(the lovely feet and footwear belong to our neighbor Chloe)One of our favourite Edmonton nurses:
(her name is Natalie but we secretly call her Philippa)


The flight paramedics and nurse getting Ford ready for transfer:
Ford sedated and tucked into the "car bed" for flight!
In Vancouver all the babes get their own white board with important deets:

Hanging out with Mom:
With Dad:
Unsure of the one-shoulder-onesie look (we assured him all the other babies would be sure to follow suit shortly - nothing says summer IV like this off the shoulder ensemble!)
Ford being upright! A sensation he didn't experience until 6 weeks old:

Lytic in nature (Why don't you get a room?)

We found out a few days ago that one of Ford's cultures came back positive for rhinovirus. But while this does explain his crusty nose, persistent sneezing, coughing, and irritability, it does little to make sense of the large tusk that has lately been growing out of his forehead. Go figure.

Fearing a plague of bubonic proportions Ford was immediately isolated in a private room in the back of the NICU until furthur notice.

We are hardly complaining.

As much as we have come to enjoy the hustle and bustle of the ward lifestyle (I just got a sick tatoo across my back "Intensive Care 4 Life"), the hostelesque (with beds starting at $6000 a night) proximity to our neighbours and their sickly children is starting to wear a little thin (I'm sure the feeling is mutual - Sorry Dean, If you're reading this).

And while I cringe to consider, with respect to the fact that the aforementioned price purchased us about 6sq ft of 'living space', what the new per diem being offered us by Canadian health care is, we are really enjoying our spacious 144sq ft pad. Turns out quaratine isn't all that bad.

Ford seems well enough, certainly not struggling much more than before, and his sneezes are the most adorable sounds he's yet produced. In keeping with our theme of the slow crawl towards normal parenting, I am also thrilled to announce that Ford has spread his germs to Christa and she has (probably) spread them to me. Go family! And I would like to ask you, dear readership, if we might siphon off some of Ford's sympathetic vibes and pass them along to Christa who is really feeling pretty rough right now - she was kicked out of the hospital this evening, mask and all!

Otherwise there is not too much to add. Ford's next challenge is to fatten up (he has been steadily climbing this last week and is now back at his birth weight!) and start taking his feeds orally, gastrically, and in compressed doses. I met with one of the cardiologists today, Dr. Human (yeah, I know right?), who has promised to get their team's occupational therapist working on him asap. It might be hard to get him taking food orally, so he will need some training. Please think your best, greasy, fatty thoughts and send them Ford's way.

Mmm. See? Now I'm hungry.

Pas de problème (White snakes)

The CT scan showed nothing abnormal with Ford's heart. We didn't get to watch them perform the scan but the device itself looked pretty cool. I've never been in an MRI or CT room before. Afterwards, I was asking his nurse, who was there during the test, what it looked like. She thought about it for a minute and then said something like: Well, I'm not really sure, it looked cool, kind of like a bunch of white snakes moving through his body.

That got me hoping that perhaps this was the real problem behind all his complications, something that no one had noticed before because they just weren't really looking for white snakes. The cardiologist invited us later to look at the results and took the time to point out the things they were looking at/for, here is the shunt, here is the pulmonary artery, here is the coronary artery, nothing abnormal for a kid with his condition. It all made a certain amount of sense, but I was inclined to agree with the nurse. We've been searching for some alternative therapies for Ford, to help him with his recovery, and I'm thinking we ought to ask for a referral to a herpetologist, just in case.

Otherwise, he's been pretty stable for the last few days. We are, as always, hoping the weather holds.