there is a plan. there's been a plan for a couple weeks but i tucked it away in the corner of my mind, happier to focus on coming upstairs, going outside, and having what feels like the most normal parenting experience so far. i.e. caring for and being with our baby 24/7, abeit in a small hospital room with a lot of medical personnel coming and going as they please.
i'm reluctant to pay much attention to the plan because a) things never go according to... and b) the plan means Ford has to go back to the ICU, have his chest opened up again and his heart futzed with. i know the futzing is needed for him to get better and get out of this place, but it's hard to think of him looking like he did 3 months ago, when he looks so beautiful and life-like now.
the plan is what was hypothesized a few weeks/blog posts ago - to keep Ford in the hospital until his next surgery (the Glen procedure that attaches the superior vena cava to the pulmonary artery) and to do that next surgery as soon as possible. in the meantime, to have as few interventions as possible, focusing on him growing and gaining weight. Ford is having a tough time putting on the pounds, despite calorie boosted "feed". in 3 weeks he gained 10 grams. also known as practically nothing. thankfully, the most competent dietitian came back from holiday and increased his daily intake as well as made a plan to increase the calories/ml higher. as a result, he finally broke the 5 kg mark a few days ago! hopefully the trend will continue and we'll have a fat cat on our hands in no time, plumped and primed for the O.R.
the Glen is generally done around 6 months of age, with Dr. Rebeyka in Edmonton doing them more around 8 months, and the earliest possible age being 4 months. Ford will be 4 months in 2 weeks. 4 months is the soonest because it is around that time that the pressures in a baby's lungs normalize. at birth, after being waterlogged in utero, the pressure in one's lungs is very high. this is why hypoplast kids have the Norwood procedure at birth - a quick fix to buy them time until their lungs are ready for the more helpful procedure.
to find out if his lungs are ready, Ford is scheduled for a cardiac cath on september 1st. tuesday all ready! see, by ignoring the plan all this time, all this time has suddenly come to pass. the results of this test are a number. what kind of number we're looking for, i'm not sure. but if that number is "good", then he will have his surgery very soon. if that number is high, we will wait longer, and possibly try some drugs to bring down the pressures.
all of that said, the cardiac cath may now be postponed as it seems Ford has developed another infection. TBD, but he has had a very rough 30 hours. he is finally resting now, but has slept little the past day, instead spending his time crying/screaming painfully and rising up and down to a temperature of 38.4. they have done the round of blood/urine/stool/snot tests and we're waiting to see if they can pin point the cause of his fever and distress. while waiting for a seat in the diagnosed restaurant, he is enjoying a broad antibiotic at the wait and see bar.
which brings me back to a) that things never go according to plan. but we came close...
Saturday, August 29, 2009
Saturday, August 22, 2009
the outside adventures of Ford Riley
it was a good day.
Ford discovered that he can look at his hand - he spent a good few minutes transfixed with, and cross-eyed at, his fist:
tres amusant.
THEN, for the first time, we were allowed to take him on a walk outside of his room! this was talked about a few days ago - that they'd track down the oxygen tank on wheels and we could head out into the halls and grounds of the hospital. today we decided to give it a go, and they'd since decided he could just be off his oxygen for the duration of our wandering. he's on such a small amount - 1/8 litre - that his sats have only a slight dip without it. our accessories, therefore, were minimal - just his feeding pump, voila:
after a quick stop at the lobby's Second Cup, we head out on to the grass for Ford's first breath of fresh air!
it was very enjoyable and we had a full two hours of it before we had to be back on the ward for a 4pm med.
we recorded this bit of video of our reveling in the sun:
meanwhile, they moved us from the noisy spot of room 12 across from the nurse's station, to room 18 - a quiet corner with a view of one of the courtyards and the north shore mountains.
onwards.
p.s. for Elaine and anyone else who noticed and wondered, the new "sesame mucho" banner does feature knit letters. the letters were the second last of my pregnant knitting projects - the last, baby leg warmers, went unfinished (in so much as i only made one). sesame is Ford's nick name, earned early on in the pregnancy!
Ford discovered that he can look at his hand - he spent a good few minutes transfixed with, and cross-eyed at, his fist:
tres amusant.THEN, for the first time, we were allowed to take him on a walk outside of his room! this was talked about a few days ago - that they'd track down the oxygen tank on wheels and we could head out into the halls and grounds of the hospital. today we decided to give it a go, and they'd since decided he could just be off his oxygen for the duration of our wandering. he's on such a small amount - 1/8 litre - that his sats have only a slight dip without it. our accessories, therefore, were minimal - just his feeding pump, voila:
after a quick stop at the lobby's Second Cup, we head out on to the grass for Ford's first breath of fresh air!
it was very enjoyable and we had a full two hours of it before we had to be back on the ward for a 4pm med.
we recorded this bit of video of our reveling in the sun:
meanwhile, they moved us from the noisy spot of room 12 across from the nurse's station, to room 18 - a quiet corner with a view of one of the courtyards and the north shore mountains.
onwards.
p.s. for Elaine and anyone else who noticed and wondered, the new "sesame mucho" banner does feature knit letters. the letters were the second last of my pregnant knitting projects - the last, baby leg warmers, went unfinished (in so much as i only made one). sesame is Ford's nick name, earned early on in the pregnancy!
Tuesday, August 18, 2009
a mixed bag of news
so cute:
and we've been moved upstairs! as of yesterday, we are back on the third floor.
seeing as Ford has, for the vast majority of his existence so far, only been moved from his crib, to the rocking chair next to it, back to the crib, he seemed to much enjoy the new-ness of movement and scenery of the transfer. and not long after we got set up in the room, did he need to go downstairs for an ECG. for this trip he got to ride in a stroller for the first time! he seemed to also like that very much. it was a bit of a production as he and his stroller were accompanied by his feeding pump and an oxygen tank, so it actually took three of us to wheel it all around. he may become quite the diva, getting used to an entourage to carry his things.
at first unsure of the stroller business:
all hooked up for his ECG (luckily he got to just stay in the stroller for the test, which looks rather involved, but is actually very quick, and, apparently, very affordable at $15 to pharmacare):
from first stroller rides, to another first - wearing pants! (note sleeping Nick in the background. we've both mastered the rocking chair naps in ICU - though now that we have our own room, we also have our own bed we can properly lay down to nap on, which is wonderful):
Nick stayed over for the first night, and I'll be doing the honours tonight. Ford slept very little last night and Nick is exhausted today. apparently, so is Ford as he's been asleep for the past 6 hours and it's only 6pm... hm.... what are the chances he'll sleep at all tonight while I'm on duty?
and we've been moved upstairs! as of yesterday, we are back on the third floor.
seeing as Ford has, for the vast majority of his existence so far, only been moved from his crib, to the rocking chair next to it, back to the crib, he seemed to much enjoy the new-ness of movement and scenery of the transfer. and not long after we got set up in the room, did he need to go downstairs for an ECG. for this trip he got to ride in a stroller for the first time! he seemed to also like that very much. it was a bit of a production as he and his stroller were accompanied by his feeding pump and an oxygen tank, so it actually took three of us to wheel it all around. he may become quite the diva, getting used to an entourage to carry his things.
at first unsure of the stroller business:
all hooked up for his ECG (luckily he got to just stay in the stroller for the test, which looks rather involved, but is actually very quick, and, apparently, very affordable at $15 to pharmacare):
from first stroller rides, to another first - wearing pants! (note sleeping Nick in the background. we've both mastered the rocking chair naps in ICU - though now that we have our own room, we also have our own bed we can properly lay down to nap on, which is wonderful):
Nick stayed over for the first night, and I'll be doing the honours tonight. Ford slept very little last night and Nick is exhausted today. apparently, so is Ford as he's been asleep for the past 6 hours and it's only 6pm... hm.... what are the chances he'll sleep at all tonight while I'm on duty?
Wednesday, August 12, 2009
Never Cry Ward
They did it again! Yesterday it was an 8am phone call from nurse Declan saying Ford was being moved upstairs. By the time I got there, they were mid rounds and Dr. Sanatani, this week's rep from cardiology, had kiboshed the plan. Poo.
Ford is stable enough to go back up - he's on low flow with just the faintist whiff of oxygen (they decided the high fow wasn't doing anything after all), but Dr. Sanatani prefers Ford stay uber managed in the ICU a bit longer.
Okay.
Meanwhile, Ford is three months old today! And here he is showing how he's figuring out he can hold his beloved soother in by himself - so grown up!
It is also my mom's birthday today - Happy Birthday Momma/Corrine!
And it's Christine's birthday - Happy Birthday Grand-troll Christine!
AND it's Hastings' birthday! We loved the photos of the birthday party - Happy Birthday Hastings!
Ford is stable enough to go back up - he's on low flow with just the faintist whiff of oxygen (they decided the high fow wasn't doing anything after all), but Dr. Sanatani prefers Ford stay uber managed in the ICU a bit longer.
Okay.
Meanwhile, Ford is three months old today! And here he is showing how he's figuring out he can hold his beloved soother in by himself - so grown up!
It is also my mom's birthday today - Happy Birthday Momma/Corrine!
And it's Christine's birthday - Happy Birthday Grand-troll Christine!
AND it's Hastings' birthday! We loved the photos of the birthday party - Happy Birthday Hastings!
Sunday, August 9, 2009
clarification, team work, and very sad days
to clarify for you what was clarified for me since my last post, it's not so much that Ford's oxygen requirements need to get back down to room air, as it is just that he needs to be off the high flow before we can go back upstairs. they can provide oxygen/low flow upstairs, no problem, they just don't do the high flow. got it.
and friday morning, after 24 hours of being on the low flow, someone made the call that he was ready to move up. when i arrived at 9am, the nurse was packing his things and i, excited, finished the job. packing his things mostly means piling them on to the end of his bed in a heap of blankets, clothes, toys and books. when the doctors came around for rounds, the intensivist said "so this young man is going upstairs today - is everyone happy with that?" and there i saw at the back of the crowd Dr. Human shaking his head emphatically - "cardiology is not happy". phooey. (Dr. Human was also rocking on his feet back and forth and sticking out his chin before talking, as he always does, and as i quite like observing in him). seeing as Ford has been back and forth with the ol' high flow, "cardiology" felt that he should be given the weekend to prove himself on the low flow before going through the transfer process. fair enough, though i was disheartened and only unpacked half of Ford's things, committed to getting out of the ICU soon. "monday" they said.
however, all of friday day and night, Ford was incredibly irritable and unsettled, and saturday morning, Dr. Human suggested it was the work of breathing that was upsetting him so. therefore, moments later, Ford was back on the high flow. sigh. the intensivist suggested an echo as well, in case the irritability was due to heart failure. gratefully, the echo didn't find any trouble. something about checking the coronaries. must learn more about that detail as, apparently, according to nurse Declan, the coronaries will always be a concern for Ford, well past his third modification surgery. perhaps this relates to why 20% of HLHS kids die from heart attacks in their teens. note to self - look it up.
by this morning, Ford was less irritable, but still not entirely his usual self. by this evening, he was finally catching up on the sleep he'd missed the past few days while he was being awake and grumpy and had been asleep for 6 hours when we kissed him goodnight.
Dr. Human is going to meet with "the team" tomorrow and make a plan for Ford. specifically, decide when they think they could do the Glen procedure (stage 2 of his 3 stage heart reconstruction) and how much weight they want him to gain before then. he doesn't think Ford is going to get much better at breathing on his own until his heart has a little less work to do.
which makes it seem like we won't get to go home before the Glen . but that's a question to be asked post team meeting.
the ICU was a very sad place today. i don't know the name of the little girl that died, or how she died, but i was in the pump room when the mother called her own mother, just on the otherside of the pump room door, and sobbed/screamed "she's gone, she's gone". the deep pain she was in, that agonizing cry, so quickly recalled the crying i've done for Emmett. i know some of you readers have lost a child and you know well the sound and depth of such crying. i wonder if the rest of you can truly imagine it. watching the door to that little girls room all afternoon, as family arrived and took turns going in and out, had me thinking of the events around Emmett's birth and death. it was very moving to see that girls family gathered in the waiting room and my heart just aches for them, and for Emmett. my heart just aches.
it's very hard living at the hospital, needless to say. Ford is 3 months old this week and looking around at the kids in the ICU who have been there 2 years, it's daunting to think of how much more time we may have there. but hearing that mother today, and thinking of Emmett, i'm grateful that Ford is here, in all his medically enhanced glory, and continue to dream of this being in the past, and Ford being home.
and friday morning, after 24 hours of being on the low flow, someone made the call that he was ready to move up. when i arrived at 9am, the nurse was packing his things and i, excited, finished the job. packing his things mostly means piling them on to the end of his bed in a heap of blankets, clothes, toys and books. when the doctors came around for rounds, the intensivist said "so this young man is going upstairs today - is everyone happy with that?" and there i saw at the back of the crowd Dr. Human shaking his head emphatically - "cardiology is not happy". phooey. (Dr. Human was also rocking on his feet back and forth and sticking out his chin before talking, as he always does, and as i quite like observing in him). seeing as Ford has been back and forth with the ol' high flow, "cardiology" felt that he should be given the weekend to prove himself on the low flow before going through the transfer process. fair enough, though i was disheartened and only unpacked half of Ford's things, committed to getting out of the ICU soon. "monday" they said.
however, all of friday day and night, Ford was incredibly irritable and unsettled, and saturday morning, Dr. Human suggested it was the work of breathing that was upsetting him so. therefore, moments later, Ford was back on the high flow. sigh. the intensivist suggested an echo as well, in case the irritability was due to heart failure. gratefully, the echo didn't find any trouble. something about checking the coronaries. must learn more about that detail as, apparently, according to nurse Declan, the coronaries will always be a concern for Ford, well past his third modification surgery. perhaps this relates to why 20% of HLHS kids die from heart attacks in their teens. note to self - look it up.
by this morning, Ford was less irritable, but still not entirely his usual self. by this evening, he was finally catching up on the sleep he'd missed the past few days while he was being awake and grumpy and had been asleep for 6 hours when we kissed him goodnight.
Dr. Human is going to meet with "the team" tomorrow and make a plan for Ford. specifically, decide when they think they could do the Glen procedure (stage 2 of his 3 stage heart reconstruction) and how much weight they want him to gain before then. he doesn't think Ford is going to get much better at breathing on his own until his heart has a little less work to do.
which makes it seem like we won't get to go home before the Glen . but that's a question to be asked post team meeting.
the ICU was a very sad place today. i don't know the name of the little girl that died, or how she died, but i was in the pump room when the mother called her own mother, just on the otherside of the pump room door, and sobbed/screamed "she's gone, she's gone". the deep pain she was in, that agonizing cry, so quickly recalled the crying i've done for Emmett. i know some of you readers have lost a child and you know well the sound and depth of such crying. i wonder if the rest of you can truly imagine it. watching the door to that little girls room all afternoon, as family arrived and took turns going in and out, had me thinking of the events around Emmett's birth and death. it was very moving to see that girls family gathered in the waiting room and my heart just aches for them, and for Emmett. my heart just aches.
it's very hard living at the hospital, needless to say. Ford is 3 months old this week and looking around at the kids in the ICU who have been there 2 years, it's daunting to think of how much more time we may have there. but hearing that mother today, and thinking of Emmett, i'm grateful that Ford is here, in all his medically enhanced glory, and continue to dream of this being in the past, and Ford being home.
Wednesday, August 5, 2009
p.s.
in even better news, Ford has his first bath yesterday! at 12 weeks old, to the day, he sat his butt in a tubby of warm water for the first time (he's only been sponge bathed to date). he didn't like it. we did, and will post photos soon.
also for the first time, he smiled for more than a fleeting moment. long enough for nick to mention it, me to get up and walk over and still see the beauty of it. in fact, for about 5 minutes, he seemed to be right cracking up. we were astounded as he has so rarely smiled thus far (who could blame him for not?) and thrilled to see him let loose for once! it was gorgeous. we don't have photos of it as we were too well absorbed in the moment to think of capturing it outside our memory, but hopefully it will start to happen more frequently and we won't mind looking away to look through a lens. he is soooooooooooooooo cute!!!
also for the first time, he smiled for more than a fleeting moment. long enough for nick to mention it, me to get up and walk over and still see the beauty of it. in fact, for about 5 minutes, he seemed to be right cracking up. we were astounded as he has so rarely smiled thus far (who could blame him for not?) and thrilled to see him let loose for once! it was gorgeous. we don't have photos of it as we were too well absorbed in the moment to think of capturing it outside our memory, but hopefully it will start to happen more frequently and we won't mind looking away to look through a lens. he is soooooooooooooooo cute!!!
post-op and french lovers
please excuse the delay in updating - we're tired. but since we last spoke, Ford had his diaphragam re-plication (i've noticed the importance of the "-" as it surely isn't a replication) and is recovering nicely.
they didn't take him in until about 7pm friday night so the day was a long one of waiting and patting his head reassuringly that the intubation would be short lived. indeed it was - when we arrived saturday morning it was out and he was back on high flow! yay!
so far, it seems the procedure was a success - his respitory rates have been excellant since friday, in the 30-60s instead of 70s, 80s, 90s... so that is wonderful.
he has, however, since the procedure, had quite the oxygen requirement - 40% in his high flow. this is unlike him. obviously prior to being put back on high flow he was breathing room air (21%), but for the almost 2 weeks on it, he hovered around 21-25%. and before the prongs can come out, he's got to be back down to that.
they think it is because of atelectasis in the left lung, meaning lung collapse/his left lung can't inflate fully. while the diagphragm, since it came undone, was keeping the lung from fully expanding, it got a bit stuck there even though now the diaphragam is out of the way. there's a bunch of mucus caked in the lower lobe, keeping it from expanding. a few doses of sildenafil and rigourous physio therepy, preceded by ventolin, seems to be helping clear it out and hopefully within a couple days we'll see his sats increase along with the lung reclaiming it's space.
i, christa, on a side note, was well pleased that Ford's physio therapist, Fredrique, is married to the neonatologist Ahmed that we loved in the NICU. i like to imagine that we're in an episode of ER and when the young attractive staff are involved with each other, it helps perpetuate the day dream. they're a very cute couple, returning to their native Montreal at the end of the summer once Ahmed has finished his exams. Aw.
they didn't take him in until about 7pm friday night so the day was a long one of waiting and patting his head reassuringly that the intubation would be short lived. indeed it was - when we arrived saturday morning it was out and he was back on high flow! yay!
so far, it seems the procedure was a success - his respitory rates have been excellant since friday, in the 30-60s instead of 70s, 80s, 90s... so that is wonderful.
he has, however, since the procedure, had quite the oxygen requirement - 40% in his high flow. this is unlike him. obviously prior to being put back on high flow he was breathing room air (21%), but for the almost 2 weeks on it, he hovered around 21-25%. and before the prongs can come out, he's got to be back down to that.
they think it is because of atelectasis in the left lung, meaning lung collapse/his left lung can't inflate fully. while the diagphragm, since it came undone, was keeping the lung from fully expanding, it got a bit stuck there even though now the diaphragam is out of the way. there's a bunch of mucus caked in the lower lobe, keeping it from expanding. a few doses of sildenafil and rigourous physio therepy, preceded by ventolin, seems to be helping clear it out and hopefully within a couple days we'll see his sats increase along with the lung reclaiming it's space.
i, christa, on a side note, was well pleased that Ford's physio therapist, Fredrique, is married to the neonatologist Ahmed that we loved in the NICU. i like to imagine that we're in an episode of ER and when the young attractive staff are involved with each other, it helps perpetuate the day dream. they're a very cute couple, returning to their native Montreal at the end of the summer once Ahmed has finished his exams. Aw.
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