Extubation and what you get when you say 'ouch' to a young doctor

They came by yesterday to review a list of patients waiting to be transferred from PICU to NICU and at first we thought Ford was not going to make the cut. All our begging and pleading went unheard and while I'm inclined to believe they had something like a triage assesment of who was in the most need (to not go, in this case), I was assured they merely pulled straws.* And so off Ford went.

Seriously, it is a good thing because it means he is in a somewhat less critical condition, although you might not guess it from looking at him.

So we got up bright an early for NICU rounds this morning (got to the hospital at 9am - not really early, I know. But hey, it's Saturday) and we even managed to catch the cardiology rounds, which happen much earlier than the ICU rounds. Cardiologists, I guess, prefer to skulk around in the early morning gloom.

It was all good news.

First up was the removal of the PD catheter in his abdomen, which was unceremoniously yanked out about 3 seconds after he got a shot of ketamine. That drug works quick and our little astral traveller was no doubt crusing some parallel dimension when it happened. Then they pulled off the bandages from his incision, to check how the wound was healing and all appeared well.

Since I am wont to make fun of the doctors, I feel the need to throw in this anecdote, however likely it is that I am the only one who finds it funny:

The NICU doc on rounds this morning was pretty young, relatively, and fun to chat with. Prior to pulling off Ford's bandages he asked the nurse (who had at least 25 years on him) whether they ought to use _______ (chemical name) to help soften the adhesive first, to which she replied: Oh god, we haven't used that since before you were born! We found it took off more than just the adhesive.

Ouch! I said.

The young NICU Doc quickly looked over to me and fumbled through the explanation: I only asked her, because she's got so much direct experience with these sorts of things!

He seemed genuinely embarrassed by the nurse's comment and my reaction to it, which had me momentarily confused, because I was thinking 'ouch' as in: yikes, that hurts! and he was thinking something like: Ohhh, Snap!

The jist of it being that he seems the pleasant sort who would cordially banter in colloquialism, fondly calling the nurses "my bitches" and shouting things like "you got served!" whenever someone made a mistake. I liked him.

Maybe i'm reaching too far for things these days. I probably need to ground myself some more.

Second order of the day was extubation, which is a big step for Ford. Basically ever since birth he has been on a respiratory machine to assist (and in some cases completely control) his breathing. It's quite a complicated machine and its effects were balancing the effects of certain medications, but then they were using other medications to balance the effects of the machine, and it was all a whole tangled mess. With the tube out he is now breathing entirely on his own, and this will be the big test to see how is heart is going to handle the distribution of blood from lungs to body. It is likely that he will react badly to it and they will have to reinsert the tube and ween him some more... wow, just as I finished typing that sentence Christa text messaged me from the NICU to say they had to put him back on.... so, umm.. that sort of derails the rest of my explanation.

two steps forward, one step back.

I gather it was expected, so its just another hiccup on his long road to recovery.



*(refers back to first paragraph) Dr. Cave also admitted that most of the fuss and equipment in the PICU was for show and that it was all really just witchcraft - some room in the back, with candles and incense, a stone deity of the pagan variety and a whole lot of chanting was what was really keeping everyone in there alive. FYI.

one week

it's been one week since the surgery... just another 6 or 7 to go before we can go home! we have a couple pictures of what it all looked like 6 days ago, but since some of you may be sqeamish, i'm just going to link to them comme ca:

post op 01

post op 02 (the close up)


if medical stuff makes you queasy, don't click on those!

he looks different already - as nick describes below. his heart is safely enclosed behind his chest, and he's a much nicer shade of pink.

most of the time ford is sleeping/sedated, but he does occasionally wake up. understandably, in those waking moments, he is usually either stoned (he gets a constant morphine infusion) and/or disgruntled with his situation. here is our dearheart looking a little glum -

but things are slowly changing and we look forward to happier expressions. today he's still struggling with his "sats" (the oxygen saturation level) and had an "episode" over night. in weening him off the ventilator, they reduced the morphine - being less sedated means he'll do more of his breathing on his own. but his blood pressure went up in response and a new IV had to be started in his scalp so they can give him meds that will keep that down AND let him be more awake. shuffle shuffle.

in other news, he got his first dose of breast milk today! through the nose, straight to the intestines - nothing can go in his stommach while he's intubated. so that's a step in the right direction! yay ford!

Caution: Slow Children

Ford has regained some dignity today with the removal of the piece of masking tape that had been stuck to his chest since the surgery, on which the surgeon had hastily written in ball-point pen: Sternum Open! While I am generally all in favour of ad-hoc approaches to problem solving, there was something a little dubious about this one, and there were several moments over the weekend where I sucked my breath in anticipation as the nurse put a hand on his chest while she wiped his mouth or adjusted his respirator. Eduction, training, and complete knowledge of his condition aside, compounded on the fact that you could see his heart actively pumping just beneath the line of stitches, I was on the verge of blurting out - can't you read the sign!? I think it might have reminded me a little too much of the times I was painting houses and would write similar warnings on masking tape: Wet Paint! and people would go right ahead and smear their hands all over it.

Oops.

He has been cleaned up quite a bit this morning and he looked like a peacefully sleeping baby instead of a gruesome science project (Christa might disagree with me on the science project thing, but she's not here to argue). Although he is still getting a significant amount of help with is breathing and oxygen saturation levels (max dose of milrinone, nitric oxide, 45% oxygen, 'peep' of 9 - that's for all you budding respiratory therapists out there) we are told that he is 'very slowly' stabalizing. The chest closure yesterday was rougher on him than anticipated, mostly with respect to his lungs, which are struggling against the sudden constriction of the chest cavity. They are in the process of weening him off as much of it as they can today, and depending on how well he copes we should be moving back to the relative comfort of the NICU in a few days time.

He was waking up to hiccups just as I left to come write this and I'm sure he is blowing his 'happy bubbles' (or: thick, white, sticky - again for all you budding RTs) right now, through the haze of multiple sedatives.

Finally some closure

They've just thrown everyone out of the PICU who isn't plugged into anything so they can begin to close Ford's chest. It's only supposed to take an hour so we should be able to go back in a see him soon. He was wide awake again this morning and we spent some time sticking our faces within inches of his and cooing and calling him funny names, but I think he's too stoned to really process much.

While we have the opportunity to sit out in the waiting room and wring our hands with worry during the proceedure, we've decided to go get lattes across the street instead. It should all be fine and we will fill you all in sometime tomorrow on how it went.

A quick eyebrow wax at the PICU spa

So the chest closure isn't happening today after all. There is still 'too much fluid in his tissues' which they are waiting to drain. If we're lucky it will be tomorrow, but it still depends on him. Apparently he is doing really well and the only thing that's holding him back is this problem with the residual, post-op swelling. Dr. Cave said this morning that Ford is about two days behind their 'best patients' in terms of the anticipated time-line for recovery.

They was some concern about the oxygen saturation levels in the blood returning from his upper body (brain mostly) and so they've strapped an expensive (apparently $30,000) sensor to his forehead to get another measure of those levels. Dr. Cave wasn't too concerned that it was a problem with Ford, he was mostly worried that it was a faulty reading from the other sensor they have on his arm. After plugging it all in (it is really hard to find room to add new equipment around him as he is already so crowded with stuff) the initial readings confirmed his suspicion that all was indeed well. They will continue to monitor him with this over the next 8 hours just to be safe. It is good to know that his brain hasn't been deprived of oxygen all this time. Dr. Cave was also quick to point out that the adhesive used to stick the sensor to Fords head would act like a waxing strip when they take it off. So what little eyebrows he's had time to grow in will be removed in one painful tug. The tension never ends around here, and if things seem to be relaxing someone invariably shows up with some kind of vague concern that quickty turns out to be benign. Keeps us on our toes. Although I guess we should really hope we continue to be so lucky.

We're hoping to post more pictures soon. Maybe even some video. We don't have much access to comprehensive web browsing and basic desktops around here, so its hard to upload anything.

The word of the street

Ford had to get help with his kidneys yesterday and they emptied the PICU of family/visitors to perform the hour long operation. It all went well and is working great (i believe it is called a Nephrostomy) and this morning he was draining well as well as peeing lots on his own. The doctors seemed very pleased with this during their rounds. They have to have him 'dry' before they will close his chest and the word is that this will happen tomorrow, barring and bad behaviour on his part. We are doing our best to discipline him, but its hard with all the sedation and tubes and machines to keep him paying attention. He's been awake much of this morning and is pretty good at making (or else faking) eye contact with Christa and I from either side of the bed. That's pretty exciting for us. Every small indication that he is aware of us is incredibly rewarding, as these slow days of sitting at a bedside are mostly alienating.

He was having trouble with his left leg the last few days - a clot formed around the 'pic' line that they had inserted near his waist and he wasn't getting much circulation. It had gotten pretty swollen and purple. They managed to find a spot in his upper arm (its hard to find available veins to plug more things into these days) and were able to remove the one in his leg that was giving him trouble. They did an ultrasound of the area to watch the blood flow and upped his Heparin dose to help dissolve the clot that had formed. It seems to be much less swollen today and has changed colour.

Christa is visiting with him now and is accompanied by her step-mother Ruth as well as with our friend Paige, who flew out with her family from Vancouver to spend a few days with us here. Her 14 month old daughter Asha is busy exploring the Stollery hopsital, which I just have to say is one of the coolest hospitals I've ever been in - incredibly open and full of plants and natural sunlight. It occasionally feels like a really nice place to spend the afternoon.

Doctor Dominic Cave and the Pediatric Intensive Care Unit

Ford seems to be doing ok in the PICU today, about 24 hours post-op. They've discontinued one of his sedatives (Midazolam) and he woke up for a while this morning. He's still on morhphine though, so he was pretty dopey (although I guess most 10 day old kids are kinda dopey). He stayed stable all night (we were expecting a call at 2am requesting our consent for some dramatic intervention they would need to perform, but there was none) and is continuing to keep his numbers where they want them . They are a bit concerned about his kidneys, which aren't working as well as they hoped. But this is apparenty not uncommon after surgery and they are entertaining several options (including putting a draining tube directly into his abdomen). Yesterday they were really concerned that his blood pressure and heart rate were too low, so they were pumping him full of saline, blood, and blood related products to bring it up. But this morning he got pretty upset while he was awake and they didn't like how high his numbers were getting, so they have put him on ativan (sp?) to bring them all back down. So it's all up and down still. One nurse called it the 'neonatal two-step' (two steps forward, one step back).

He has a lovely sign above his bed - Caution: Chest cavity open (skin closed). The surgeons have kept his ribs open (braced with some piece of plastic or metal) to keep the pressure off the potential swelling of the heart. If he continues to do as well as he's doing they will come back to finish closing him up either tomorrow or the next day.

We are finding the vibe in the PICU alot different than the NICU. For one, there is alot more 'action,' as things seem to be generally more critical, but mostly it is the personalities of the intensivists and nurses, who are way more silly and crack alot of jokes that might seem to be in bad-taste (which has me - nick - in fits of laughter). Dr. Dominic Cave is our favourite (not just because of his name and british accent), he is amazing at explaining everything that's going on in a really straightforward fashion and is full of generosity, wit, and sarcasm.

The next few days could still get pretty bad, but at the moment we are feeling pretty good.

in for surgery

ford went in for surgery at 7:30 this morning. the first hour is administering the anesthetic and getting set up. then the hard stuff, in the hands of surgeon dr. rebekya. while they're working on his heart, he will be on a lung and heart bypass machine. then an hour of watching to see how it goes when they switch him back to his heart. then close and clean up and out sometime after noon. we'll see him wheeled from the OR into PICU, and, we're told, about a half hour later, be able to go in and see him. it's 9:26 now...

visual aids

ford's first space ship - the ride from the royal alex hospital to the stollery hospital:

the happy healthy heart susan knitted for ford so he knows what we're working towards!

the monitor we watch all the time to know how he's doing. here is heart rate, oxygen saturation (sensor #1), blood pressure, oxygen sat (sensor #2), respitory rate and co2:

getting to hold him! avec acoutrements:

wagging tongue and open blue eyes:

not today

well surgery was planned for today, but we got bumped by a baby in very critical condition. so the plan is now for tomorrow - first thing in the morning, again barring any emergencies.

ford is having another tough day today. he is still stable, but struggling with a few things. the NICU is not the kind of place where you long to be the centre of attention. this morning, as his heart rate, blood pressure, and co2 levels all climbed above the numbers they were comfortable with, and his oxygen saturations levels dropped from 80% to 40%, we had 6 people standing around him, as opposed to the usual one dedicated nurse. at first they were all making adjustments. then they, and we, just stared at the monitor and waited for the numbers to change.

the co2 and blood pressure came down, and the crowd dispersed. today's nurse, tim, is working on bringing the rest down - an increase in medazolam first, to no effect. and now, an increase in the morphine, in hopes of calming ford's racing heart. his high-ish temperature is a result of the prostin. a chest x-ray showed a bit of collapse at the top of his right lung, which they think is clogged with mucus. lung physio is on its way to break that up so they can suction it out....

ugh...

(back to check and now back to update)

he's lost his pink colour and is now a sallow purple, but that is apparently quite normal for kids with his condition. they are pumping him full of saline because he has failed to respond to the sedatives. apparently they may have dried him out too much in preparation for his now postponed surgery, and so his heart is having to pump twice as hard to push the blood around. the fluid seems to be slowly having the effect they want, but he is still cruising the low 200s with his bpm. several doctors swung around again and gave him the once over - they didn't seem very concerned, so we are trying to calm ourselves down. too bad they weren't more keen on sharing the morphine IVs.

and so we wait for tomorrow.

Ford is one week old today! But not doing well this morning. They had to put him back on pavulon - the paralytic - this morning, as there was too much fluid in his lungs. The past 3 days (or so? time is strange right now) he had been off it, and yesterday was an all time low for the levels of morphine and midazolam. Meaning, he was waking up at times to look around and at us, and moving his hands, feet, head... grabbing our fingers in his and so on. Even crying - though he can't make any noise while intubated, he does make a big cry face! Seeing him moving and interacting with him has been so lovely, and he had been doing most of his breathing on his own. But overnight he wasn't able to swing it anymore - so back on the paralytic and upping the sedatives again. Which is the best thing for him, but hard to not have those reassuring little movements from him.

His temperature has been up today too, so we're waiting on a blood test to see if he has an infection. Urine test is a-okay. If he has an infection, the surgery will be postponed. If not, the surgery is still planned for tomorrow afternoon.

* * * * * * * * * * * *

Yesterday, the cab driver who took us from the Ronald McDonald House to the Stollery refused to take the tip on the fare, and made the receipt out for more than we paid, "keep it for the kid". Some people are so kind.

the big day

for the last few days of the pregnancy, we stayed at the Ramada on Kingsway in Edmonton - just down the road from the hospital.... here's the morning of may 12th, baby's last moments in utero -


other than being delayed 2 hours, the c-section went well - so quick to get baby out! we knew as soon as he was born, the NICU team would have him first to clean him up and start an IV. all the medical peeps were very impressed with baby's size - 9lbs 6 oz!

very soon after christa was able to hold him as he was breathing on his own at birth.

it was very special to have that time with him post birth - once at the NICU he quickly needed a lot of support to become stable.

after a couple rough days of finding the right mix, our little boy, Ford Riley, is stable and doing well, for a wee one with his condition. otherwise - everything about him is big and beautiful - those lips! those hands!

the deets

we learned at 20 weeks that our little one would be born with hypoplastic left heart syndrome. here's some info about it:

http://pted.org/?id=hypoplasticleft1

baby will be born in Edmonton Alberta to be treated at the Stollery Hospital - the go to place for baby heart problems - and be on the track for the 3 stage modification, starting with the Norwood procedure.

here we go...