It's been a crazy few weeks here.
Leaf is getting a trach - apparently tonight, based on the phone call I just got. We were planning for Thursday, then Saturday, and now today. Ahhhh!
Then we're probably transferring about an hour and a half away to a larger hospital to have her PDA surgically closed.
And then hopefully home to try to find our groove again, this time with more appointments to shove in the same amount of time.
*****
Acorn has not slept a full night since his hospital stay. We're all exhausted.
He's also on a potty strike....unless it involves running around naked and peeing on the stairs, which makes them slippery. At least he wasn't hurt falling down them.
We're waiting for a spot to have him evaluated for a speaking device. I'm hoping it goes well; we're all terribly frustrated with his limited communication skills
*****
All in all, this stay at home mom thing is mostly working. I'm less stressed, the house isn't a total disaster, and no one has died. Here's to the next 4 1/2 months.
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Friday, December 9, 2011
Saturday, December 4, 2010
Saturday morning
Some days, morning comes far too early. Our Saturday nurse is out on medical leave, which means on Saturdays, one of us has to be up by 7 when the night nurse leaves for report...and then frequently, I head back to bed, and turn the baby monitor on.
This morning is no exception, except I couldn't sleep.
I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.
Acorn is not even 48 hours post surgery, which has brought its own issues.
At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.
But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.
Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.
No....none of that could possibly be making him restless. Not at all.
Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night. We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.
ahem.
Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?
This morning is no exception, except I couldn't sleep.
I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.
Acorn is not even 48 hours post surgery, which has brought its own issues.
At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.
But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.
Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.
No....none of that could possibly be making him restless. Not at all.
Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night. We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.
ahem.
Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?
Sunday, July 11, 2010
It's a Good Thing He Likes Fire Trucks
Last night we had a rather unwelcome sort of excitement. Our smoke detectors went off around 1 am...but only for a few beeps. Of course, all of us (me, spouse, my mom who was visiting, and Acorn) were sleeping - well, ok, the nurse wasn't sleeping - and then weren't. Luckily Acorn slept the whole time.
We walked the whole house, and found nothing, so we went back to bed.
And just as we were settling in, Big Oak was going to tell me about the really bizarre dream he was having just before the alarm went off, the alarms went off again. Just one set of beeps this time.
Now, I don't know how it is at your house, but our house was built with the alarms pre-installed. They're all wired together, so if you set one off, they all go off. So...it's loud. Really really loud.
We walked the house again, top to bottom. The nurse is getting paranoid by this point. We turned off the dryer and went back to bed.
I ask Big Oak about his dream, and he says that he was having a dream, and heard a man's voice calling his name, completely unrelated to the dream. It woke him up, and he had actually just opened his eyes when the alarm first went off.
And, of course, now I'm feeling a bit paranoid. But, we decide sleep is important because the nurse is leaving at 7 am, and as we finally drift off to sleep, it happens yet again.
Anyway, I decide that this calls for drastic measures, and I call the police/fire dispatch line (not 911) - the alarms go off twice more while I look up the number. I explain that I probably sound nuts, but the smoke alarms keep going off for a few seconds and then stopping. He askes how many times, and I look at the clock, and get ready to tell him five times in 40 minutes, when they go off again.. He says, "wait, was that your smoke alarm?" Yes, yes it was. "ok, how many people are in your house?" Four adults, one toddler. "Ok, I'd like you all to wait on the porch."
Um....I have a sleeping toddler (and yes, he slept through all of it) who has a trach and is on oxygen. This is going to take a bit of organizing. He asks if we need a paramedic unit to come evacuate the house, and I said no, just that it was going to take a couple minutes.
So, out the door we go, alarms still going off randomly. We decide to put Acorn in his car seat so we're not worrying about him getting trampled. He of course wakes up, rather panicky that we're out in the dark.
Within a minute or two a pickup truck pulls up into the next door neighbor's drive. A man gets out with a radio and says, "so, you're having smoke alarm problems?" We start to explain, and the alarm goes off again, and stops just as quickly. He blinks a few times, says, "right. I see. You don't have a security alarm? No? Ok, I need one of you to go in with me, and we'll walk through everything."
While the rest of us are sitting there, fire trucks start arriving, with lights and no sirens, along with pickup trucks full of guys and an ambulance.
Acorn grins his biggest grin, and claps and cheers.
The neighbor comes out to ask if there's something wrong with Acorn, and we explain the problem and she commiserates....her dog got tagged by a skunk when she came out to see what the commotion was all about.
The whole time, Acorn is having a ball watching the trucks and the men in their suits.
The firemen check the whole house, top to bottom, inside and out. They find nothing....but the alarms quit going off. They suggested that we might have a detector going bad, but they're sure the house isn't in danger of burning down. They tell Big Oak that we might need to start taking the batteries out of the detectors one by one if the problem returns to discover which alarm is bad...that, or there could just be dust in one.
We all trooped back inside, but it apparently took over an hour to get Acorn back to sleep - he kept going to the window to see if the trucks were there.
I totally should have had my camera.
We walked the whole house, and found nothing, so we went back to bed.
And just as we were settling in, Big Oak was going to tell me about the really bizarre dream he was having just before the alarm went off, the alarms went off again. Just one set of beeps this time.
Now, I don't know how it is at your house, but our house was built with the alarms pre-installed. They're all wired together, so if you set one off, they all go off. So...it's loud. Really really loud.
We walked the house again, top to bottom. The nurse is getting paranoid by this point. We turned off the dryer and went back to bed.
I ask Big Oak about his dream, and he says that he was having a dream, and heard a man's voice calling his name, completely unrelated to the dream. It woke him up, and he had actually just opened his eyes when the alarm first went off.
And, of course, now I'm feeling a bit paranoid. But, we decide sleep is important because the nurse is leaving at 7 am, and as we finally drift off to sleep, it happens yet again.
Anyway, I decide that this calls for drastic measures, and I call the police/fire dispatch line (not 911) - the alarms go off twice more while I look up the number. I explain that I probably sound nuts, but the smoke alarms keep going off for a few seconds and then stopping. He askes how many times, and I look at the clock, and get ready to tell him five times in 40 minutes, when they go off again.. He says, "wait, was that your smoke alarm?" Yes, yes it was. "ok, how many people are in your house?" Four adults, one toddler. "Ok, I'd like you all to wait on the porch."
Um....I have a sleeping toddler (and yes, he slept through all of it) who has a trach and is on oxygen. This is going to take a bit of organizing. He asks if we need a paramedic unit to come evacuate the house, and I said no, just that it was going to take a couple minutes.
So, out the door we go, alarms still going off randomly. We decide to put Acorn in his car seat so we're not worrying about him getting trampled. He of course wakes up, rather panicky that we're out in the dark.
Within a minute or two a pickup truck pulls up into the next door neighbor's drive. A man gets out with a radio and says, "so, you're having smoke alarm problems?" We start to explain, and the alarm goes off again, and stops just as quickly. He blinks a few times, says, "right. I see. You don't have a security alarm? No? Ok, I need one of you to go in with me, and we'll walk through everything."
While the rest of us are sitting there, fire trucks start arriving, with lights and no sirens, along with pickup trucks full of guys and an ambulance.
Acorn grins his biggest grin, and claps and cheers.
The neighbor comes out to ask if there's something wrong with Acorn, and we explain the problem and she commiserates....her dog got tagged by a skunk when she came out to see what the commotion was all about.
The whole time, Acorn is having a ball watching the trucks and the men in their suits.
The firemen check the whole house, top to bottom, inside and out. They find nothing....but the alarms quit going off. They suggested that we might have a detector going bad, but they're sure the house isn't in danger of burning down. They tell Big Oak that we might need to start taking the batteries out of the detectors one by one if the problem returns to discover which alarm is bad...that, or there could just be dust in one.
We all trooped back inside, but it apparently took over an hour to get Acorn back to sleep - he kept going to the window to see if the trucks were there.
I totally should have had my camera.
Wednesday, March 17, 2010
growing up, and milestones
Today is the 1 year anniversary of the day Acorn got his going-home ventilator. It was one of the last steps in getting him home. At the time, we thought it was horribly noisy...and when we started weaning off the vent last fall, we thought the house was eerily quiet - what a difference a year makes.
This was us then....
And this is Acorn hamming it up for the camera last weekend:
This was us then....
You'd never know, other than the trach nose in this latest picture, that we'd ever had all those tubes and wires; that he couldn't even sit on his own without support in that top picture.
This somewhat dark picture is his crib, a year ago in his room in the NICU:
This was his crib just last week:
And this is his bed this week:
Our little guy is certainly growing up quickly, you know?
Tuesday, February 16, 2010
Sleep
Seriously, this not wanting to sleep thing is out of control.
I want my sweet sleepy boy back, who we could sit and read a story with and tuck him in and have him fall asleep peacefully.
Instead, evenings have become a war zone, and because we can't get him to sleep, we adults aren't getting any time to wind down or spend together before we have to go crash for the night.
If we take him upstairs and do jammies and a story, he cries...and we're so not into the cry-it-out philosophy, especially since Acorn is non-verbal at this point, and crying is one of the few ways he has of communicating.
Our current working plan is that when it gets to be bed time, we turn down the lights, one of us picks him up, we turn on some soft music....and we wait. I'm not sure what Big Oak really does, other than the daddy version of swaddling, but he usually falls asleep about the same time Acorn does.
When it's my turn....I pull out all the stops. We snuggle, and we limit the thrashing about because it's painful to me. And then the energy work begins.
I use reiki - or at least, I use it as best as I can, since I've never been super comfortable doing it. I use my own methods of energy work too - when Acorn is in this fighting sleep phase, his energy is orange and ragged and sharp points...and what I want him to be is a deep blue, with gentle waves. So, over and over, I lay that deep blue over top of his orange, and he slowly starts to match. Every so often, he startles himself, and the oranges and yellows break through again, but I just go back to modeling my energy and molding his.
It's not uncommon for it to take me an hour to get him to sleep. It's exhausting.
On the plus side, it's also a good reminder about being mindful and present - doing anything else while getting Acorn to sleep basically means he won't sleep. There's a part of me that is glad we have to take that time out of our crazy days to be absolutely 100% present in how we interact with him, but I wish this wasn't it.
We've tried other things - talking about deep breaths, and showing him deep slow breathing, just makes him more upset. He doesn't mouth breath much anyway, so most typical meditation techniques are out.
Day shift nurses seem to just wait for him to be too tired not to sleep to get naps in. Night shift usually gets here after Acorn is asleep on weeknights, but on weekends they get to try to get him to sleep, and they're considerably less successful than we are. I know they don't do energy work on him, so we know that's helping some.
Now if I could just find the magic wand that makes bedtime less stressful....
I want my sweet sleepy boy back, who we could sit and read a story with and tuck him in and have him fall asleep peacefully.
Instead, evenings have become a war zone, and because we can't get him to sleep, we adults aren't getting any time to wind down or spend together before we have to go crash for the night.
If we take him upstairs and do jammies and a story, he cries...and we're so not into the cry-it-out philosophy, especially since Acorn is non-verbal at this point, and crying is one of the few ways he has of communicating.
Our current working plan is that when it gets to be bed time, we turn down the lights, one of us picks him up, we turn on some soft music....and we wait. I'm not sure what Big Oak really does, other than the daddy version of swaddling, but he usually falls asleep about the same time Acorn does.
When it's my turn....I pull out all the stops. We snuggle, and we limit the thrashing about because it's painful to me. And then the energy work begins.
I use reiki - or at least, I use it as best as I can, since I've never been super comfortable doing it. I use my own methods of energy work too - when Acorn is in this fighting sleep phase, his energy is orange and ragged and sharp points...and what I want him to be is a deep blue, with gentle waves. So, over and over, I lay that deep blue over top of his orange, and he slowly starts to match. Every so often, he startles himself, and the oranges and yellows break through again, but I just go back to modeling my energy and molding his.
It's not uncommon for it to take me an hour to get him to sleep. It's exhausting.
On the plus side, it's also a good reminder about being mindful and present - doing anything else while getting Acorn to sleep basically means he won't sleep. There's a part of me that is glad we have to take that time out of our crazy days to be absolutely 100% present in how we interact with him, but I wish this wasn't it.
We've tried other things - talking about deep breaths, and showing him deep slow breathing, just makes him more upset. He doesn't mouth breath much anyway, so most typical meditation techniques are out.
Day shift nurses seem to just wait for him to be too tired not to sleep to get naps in. Night shift usually gets here after Acorn is asleep on weeknights, but on weekends they get to try to get him to sleep, and they're considerably less successful than we are. I know they don't do energy work on him, so we know that's helping some.
Now if I could just find the magic wand that makes bedtime less stressful....
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