It's a quite time in the house right now. My mum took R2D2 out to his school Pi/Math night where they get to play math games and can buy a piece of pie for a toonie. I know the money raised from this evening will go somewhere I just don't know where. Probably for the Math department. Would be the most logical choice due to it being Math and Pi night.
The house is slowly getting over the sick. Tink is feeling 100% better, hooray! Dinky however is still not exactly awesome. He's had a huge increase in his myoclonic seizures since this last Tuesday when he was put on antibiotics for his ears and throat. And by huge increase I'm talking like... yesterday in less then a 12 hours period he had 30 of his twitching fits. 18 in 12 minutes. I gave him his rescue medication as that seemed to be just a little tooooooo excessive for my liking. The day before he had 24 and yet again, his rescue was given
Today has been an improvement with only 11 so far. We had PT & OT here this morning. New PT as the one we had been working with has gone off on mat leave. Which is alright, pretty sure I'm going to like this new one. She seems to be pretty friendly. PT is back in 2 weeks and it's going to get serious in regards to equipment and what have you. Wedges for tummy time, a side positioner thingy so that he can side lay and has to stay there for a while. Dinky loves to hang out on his side but not for very long. He either just 3/4 lays on his belly or gets bored and rolls back onto his back.
So we will have things to work on with the proper tools to hopefully start seeing some progress. He lifts his head wonderfully when he is on my chest but there's no way that I can spend all day every day with him laying there for tummy time. I'm glad that we're finally starting to get the things we need to help get him on his way.
But it really isn't their fault either. They had to wait for another family to be done with it so that we could have access to it. The problem with our limited resources up here is that there tends to be items few in number. We just don't have the funding and a large influx of money for these kinds of things. Yet we make do with what we have. It's a lovely thing, being able to be so resourceful! Earlier today Dinky was on the floor with a pool noodle that had been cut in half under his chest like he PT had shown me and he was just fighting it. He kept trying to roll off and I kept putting him back on it.
So he was kicking up a huge fuss and getting pissed off that I wouldn't let him do what he wanted so Tink came over, sat down beside him, rubbed his back and started shushing. He calmed down for about 15 seconds before he started all over again. We have to be cruel to be kind. Though I have set a goal for his 1st birthday: I would like for him to have better head control so that he can maybe sit up supported and I don't have to worry about whether or not the poor kid is going to give himself whiplash with the way he just lets his head fall back.
Tomorrow is weight check. Fingers crossed he's 15 lbs! He's starting to tolerate solids a little more. Isn't so prone to gagging on them and occasionally will close his lips over the spoon. Progress! I will take it. Earlier today I positioned his hands on his bottle and Dinky held it for about 5/6 seconds. He's also become so in love with his Lulujo swaddlers. He loves them so much. Epically sweet to see him sleeping with his blanket hugged tightly.
R2D2 came home just now (well, I suppose about 20 minutes ago) and he was all excited because he won a prize tonight! He had mentioned earlier that he hopes he wins one but knows not everyone can be a winner.
Real life lessons.
As my mum says, there are more losers in life than winners. Not everyone can be a winner. Nor does that give them the right to have complete fits for not winning. Learning to lose with grace and dignity is a valuable skill I think everyone should learn. Now he's all tucked up into bed and perhaps I can convince Dinky to have a bottle and to take a sleep so I can tidy up the house and MAYBE get a bath.
Wouldn't that be lovely.
Wednesday, 25 March 2015
Thursday, 19 March 2015
Adventures of Sicktown
Well. It seems like just my luck and the house gets smacked in the face with a sick bug. In fact the blasted thing knocked on the door, walked in and dropped a giant suitcase on the floor with a huge CRAAAAAAAAAAAASH. A doomed long stay. Why oh why!? How can I evict this bug that has taken over my house?
The sore ear started with R2D2. The bug leap frogged over to Tink with ears, throat, eyes and sinuses. Moved over to Dinky with ears and throat ... and now I have the whole package. And just got kicks and giggles the Bug decided to give me a nasty, nasty cough. Have you ever had that insane, irritating ringing in your ear that just wouldn't stop?
Yeah. I have that.
Plus it sounds like my left ear has a fish bowl stuck to it so imagine my enjoyment when I yawn. Or sneeze. Or cough. So. Much. Fun. As much fun as say, rolling around in honey and laying over an ants nest. But not as much fun as eating a tub of jalapeño ice cream with hot sauce topping and bullet ant crumble as another tasty treat.
Needless to say I'm a miserable wreck. Yet through all of this, Husby hasn't gotten sick. The stinkbug.
Tuesday morning I noticed Dinky having his myoclonic twitches over the span of about an hour. Didn't give his rescue medication because we wanted to see if they would stop on their own. They did, but I still called the Peds office and we were told to just show up and we would get squeezed in. So that's just what happened. Waiting in the waiting area and our Ped walks out, sees us and goes: "You. I'm supposed to be seeing you tomorrow." ....welllllll, obviously not. Back we go and I lay Dinky on the table and start undressing him while giving a run down of what was going on. I old him that Tink was about midway through her course of antibiotics for ears, nose, throat, eyes... so he said Dinky would be getting antibiotics regardless. Checked his left ear and goes yep, checked his right ear oh for sure and grabbed a tongue depressor, pried open Dinky's mouth and we got a prescription for amoxicillin. Not only that but also had our Clobazam increased again to 10ml a day. 2.5ml at 6am (this seriously sucks!) and the rest at 8pm.
We really can't seem to catch a break. Always has to be one thing or another!
Tink had her intake assessment for speech therapy. I think it's totally not needed, but whatever. What do I know. She's happy with learning a few signs. She now signs for please, thank you, more and book. Clever girl!
I should probably get going. Dinky is awake, Tink is trying to break into a locked cupboard for cheerios and R2D2 flew through his chores so he could go to a friends house. I should set the time and give the house a 20 minute tidy. It's amazing what can get done in 20 minutes!
The sore ear started with R2D2. The bug leap frogged over to Tink with ears, throat, eyes and sinuses. Moved over to Dinky with ears and throat ... and now I have the whole package. And just got kicks and giggles the Bug decided to give me a nasty, nasty cough. Have you ever had that insane, irritating ringing in your ear that just wouldn't stop?
Yeah. I have that.
Plus it sounds like my left ear has a fish bowl stuck to it so imagine my enjoyment when I yawn. Or sneeze. Or cough. So. Much. Fun. As much fun as say, rolling around in honey and laying over an ants nest. But not as much fun as eating a tub of jalapeño ice cream with hot sauce topping and bullet ant crumble as another tasty treat.
Needless to say I'm a miserable wreck. Yet through all of this, Husby hasn't gotten sick. The stinkbug.
Tuesday morning I noticed Dinky having his myoclonic twitches over the span of about an hour. Didn't give his rescue medication because we wanted to see if they would stop on their own. They did, but I still called the Peds office and we were told to just show up and we would get squeezed in. So that's just what happened. Waiting in the waiting area and our Ped walks out, sees us and goes: "You. I'm supposed to be seeing you tomorrow." ....welllllll, obviously not. Back we go and I lay Dinky on the table and start undressing him while giving a run down of what was going on. I old him that Tink was about midway through her course of antibiotics for ears, nose, throat, eyes... so he said Dinky would be getting antibiotics regardless. Checked his left ear and goes yep, checked his right ear oh for sure and grabbed a tongue depressor, pried open Dinky's mouth and we got a prescription for amoxicillin. Not only that but also had our Clobazam increased again to 10ml a day. 2.5ml at 6am (this seriously sucks!) and the rest at 8pm.
We really can't seem to catch a break. Always has to be one thing or another!
Tink had her intake assessment for speech therapy. I think it's totally not needed, but whatever. What do I know. She's happy with learning a few signs. She now signs for please, thank you, more and book. Clever girl!
I should probably get going. Dinky is awake, Tink is trying to break into a locked cupboard for cheerios and R2D2 flew through his chores so he could go to a friends house. I should set the time and give the house a 20 minute tidy. It's amazing what can get done in 20 minutes!
Friday, 13 March 2015
A long over-due update.
I've been thinking about the need to update this darn thing but never really get the time to get around to actually doing it. Life has really just been that busy and I don't really have that much time to sit down and do a funny, witty update before Tink wakes up from her nap. So this shall be pretty much point form.
As last stated, Dinky had his first generalized seizure February 1st. We thought that the increase in clonazepam would solve everything. And it did. For 12 days.
February 12th I had noticed a few twitches here and there in the morning just before his morning medications were due. Called Neuro and left a message for them to call me back. Nothing. After his meds kicked in, he was fine. Until a half hour before his afternoon dose was due. Same thing. More twitches. Called our pedi and he said that he wanted to see us but due to the fact that Husby wasn't home he agreed to meet us at the hospital the following morning. But to give him an extra dose of clonazepam. 6:30 rolled around and there Dinky was. Twitching again. But he was laughing after every twitch, smiling and just being the goofball that he is. Paged Neuro yet again and they finally got back to me. Gave his evening medications with an added increase of Keppra -- Neuro figured that's all it was.
He had also just developed a small cough and a generous amount of snot.
Then about 2:30 am (again with the early, early morning) I woke up to some odd movements. Turned on the bedside lamp and witnessed Dinky slip into another generalized seizure. So I immediately set the timer function on my phone and between watching helplessly I was running around and throwing everything we would need into a backpack. 5 minutes passed and he was still seizing so I called 911 as per instructions. The lady on the other end of the phone was amazing and kept reassuring me that help was on the way. Yet he wasn't stopping. Once I got off the phone with 911 I called my neighbor to tell them that the ambulance was on the way and I needed her to come and sit with the kids until I could either get a hold of my mum or my mother in law. 10 minutes passed since the time Dinky started seizing to when the ambulance showed up. They came into the house, into our room and saw that he was still seizing so we wrapped him up his blanket and just left. In the time of him starting to seize and us getting into the ambulance I had managed to pack my diaper bag, grab his medications, throw together a backpack with clothes and toss my planner into the bag.
Grabbed all bags and carseat and away we went. Once in the ambulance I was answering questions about his medical history, the medications he was on, our last visit to Children's hospital, trying to call my mum, got through to my mother in law and filled her in, texted Husby who was at work and finally called him and left him a message that we were on our way to the hospital because Dinky was seizing again. Enter in the oxygen mask because he was working way to hard to breathe and his SATs kept dropping. And suctioning. Oh the boogies we got out of him in the ambulance..
15-20 mintues passed (probably closer to 20) and he finally stopped seizing. Get to the hospital and they checked him over. He had a temperature of 38.3 so Tylenol it was for him. Kept him on the O2 for a while and he slept. Husby showed up and we just sat there, wondering... worrying. The nurse brought other another stretcher so that he could lay on it and try to get some sleep while I curled up with Dinky to try and catch a nap. Our ped came in first thing in the morning, just as Dinky started to twitch again. Time for morning meds.
Except the meds didn't stop them this time. So he was given an IV for fluids and Ativan. A small dose of that and wait. Still twitching. Another small dose. Still twitching. Yet another small dose and he finally stopped. Blood work TRIED to happen but he was dehydrated from not eating for hours. They did the best that they could but Dinky just wasn't giving up his blood.
His temp was up again so more Tylenol. His SATs were dropping so more O2. Enter in one puzzled and pissed off Pedi that he couldn't figure Dinky out and we were going back to BCCH some time that day. Checked my bags and it turns out I was missing some pretty important stuff. A bottle for Dinky, and all kinds of toiletries for myself. Husby ran out and got all of that for us and then about 1pm he went home and we were on our way to the airport.
Dinky needed O2 on the flight down. We get to BCCH through Emerg and were checked into a room there to be assessed. Fever. More O2, a short nap for me and a few hours later we were moved up into an Isolation room up on the 3rd floor. And in all that time Dinky hadn't really done much nursing wise. Swabs and boogie collections happened and just trying to get him to settle down and sleep for a while.
Blood work. More blood work.. and then I learn that he tested positive for RSV. And THAT'S when things started getting crazy. He needed constant O2 because he wasn't breathing well, constant tracheal pulling and just not happy systems that way. And yet still not eating. My days passed in a constant series of saline nebulizers, nasal and oral suctioning, Tylenol and hitting that damned silencing button on the stupid SAT monitor. 4th day of being there NG tube was brought up and I said I needed to discuss it with my husband. So I did and we decided that feeding via NG would take some of the pressure off of his breathing and relieve him a bit.
So in the first NG went and for the first time in days he was able to get a feed in. 100mls every 3 hours. Medication was given in the NG as well. Swallowing was just toooooo much work for him. Chest x-ray showed his lungs were clear, VICTORY! It took a long time for him to get better. But we saw doctors every day. sometimes two or three times a day.
So now Dinky is on Clobazam. Which is what our pedi prescribed January 11th.
Medications were adjusted. 5ml of Clobazam, Keppra increased to 6mls, 6ml of the peridoxyne (B6), and 2mls of Clonazepam 3 times a day.
Ugh. My brain is so overloaded with all of this it's insane. It's literally working overtime to try and get everything straight. Clobazam was added the day after we were admitted. Metabolics came back that we could stop the B6 sometime in the first 10 days we were there. Clonazepam decrease happened I think the first week we were there?
I got to visit with friends I hadn't seen for a long, long while which was really nice. One kept bringing me food as well! Homecooked food? Yes please! Kept busy with Netflix on my Kobo -- yay for WiFi! Even got to visit with my gramma and great gramma!
And THEN I get a call from my mum that her house was burning down. Made sure that no one was hurt and then called Husby to go up there and help. And you know, grab the kids as they were at the farm...
So really, it's been a very very shitty weird whatthehelldidIeverdotodeservethis kind of start to the year.
So much for point form.
Anyway, we've been home for just over 2 weeks now. We were given a rescue medication just before we left to use if Dinky seizes for 5+ minutes or has a cluster of 3 twitches in 30 minutes.
...and what does he do? On the 8th the little bugger started twitching.Blah blah blah... gave rescue med just as we were getting ready to eat dinner. Husby called mother in law. I called Neuro. Neuro said to up his clobazam to 7.5mls and to give then.
So, 5pm noticed twitching. 5:15 gave rescue. 5:20 called Neuro. Neuro would call me back. 5:40 give the higher dose of Clobazam. 6pm we were in the truck and going to the hospital.
We were home by 10pm that night. The little booger. So higher dose of the rescue as we had to give it to him again... as well as the increase in the Clobazam. Needless to say he's been pretty zombie like. But he IS improving.
And wouldn't you know. Yesterday Tink went down for a nap with a small cough and stuffy nose. Woke up with a seriously goopey eye so Husby took her to the walk-in clinic and came home with a toddler that has the start of double ear infections, sinus infections, swollen tonsils AND PINK EYE. So SHE decided to almost get herself sent to the hospital as we couldn't get her freaking temperature down for ages. 39.7 was the highest I had ever seen it. It was just not very fun.
Okay. I cannot update any more. My brain is just mush. So much for a short, point form...
OH!
Dinky cut his first tooth and has decided that the underside of my nipple needs to be ground flesh. Nursing is SO MUCH FUN!
As last stated, Dinky had his first generalized seizure February 1st. We thought that the increase in clonazepam would solve everything. And it did. For 12 days.
February 12th I had noticed a few twitches here and there in the morning just before his morning medications were due. Called Neuro and left a message for them to call me back. Nothing. After his meds kicked in, he was fine. Until a half hour before his afternoon dose was due. Same thing. More twitches. Called our pedi and he said that he wanted to see us but due to the fact that Husby wasn't home he agreed to meet us at the hospital the following morning. But to give him an extra dose of clonazepam. 6:30 rolled around and there Dinky was. Twitching again. But he was laughing after every twitch, smiling and just being the goofball that he is. Paged Neuro yet again and they finally got back to me. Gave his evening medications with an added increase of Keppra -- Neuro figured that's all it was.
He had also just developed a small cough and a generous amount of snot.
Then about 2:30 am (again with the early, early morning) I woke up to some odd movements. Turned on the bedside lamp and witnessed Dinky slip into another generalized seizure. So I immediately set the timer function on my phone and between watching helplessly I was running around and throwing everything we would need into a backpack. 5 minutes passed and he was still seizing so I called 911 as per instructions. The lady on the other end of the phone was amazing and kept reassuring me that help was on the way. Yet he wasn't stopping. Once I got off the phone with 911 I called my neighbor to tell them that the ambulance was on the way and I needed her to come and sit with the kids until I could either get a hold of my mum or my mother in law. 10 minutes passed since the time Dinky started seizing to when the ambulance showed up. They came into the house, into our room and saw that he was still seizing so we wrapped him up his blanket and just left. In the time of him starting to seize and us getting into the ambulance I had managed to pack my diaper bag, grab his medications, throw together a backpack with clothes and toss my planner into the bag.
Grabbed all bags and carseat and away we went. Once in the ambulance I was answering questions about his medical history, the medications he was on, our last visit to Children's hospital, trying to call my mum, got through to my mother in law and filled her in, texted Husby who was at work and finally called him and left him a message that we were on our way to the hospital because Dinky was seizing again. Enter in the oxygen mask because he was working way to hard to breathe and his SATs kept dropping. And suctioning. Oh the boogies we got out of him in the ambulance..
15-20 mintues passed (probably closer to 20) and he finally stopped seizing. Get to the hospital and they checked him over. He had a temperature of 38.3 so Tylenol it was for him. Kept him on the O2 for a while and he slept. Husby showed up and we just sat there, wondering... worrying. The nurse brought other another stretcher so that he could lay on it and try to get some sleep while I curled up with Dinky to try and catch a nap. Our ped came in first thing in the morning, just as Dinky started to twitch again. Time for morning meds.
Except the meds didn't stop them this time. So he was given an IV for fluids and Ativan. A small dose of that and wait. Still twitching. Another small dose. Still twitching. Yet another small dose and he finally stopped. Blood work TRIED to happen but he was dehydrated from not eating for hours. They did the best that they could but Dinky just wasn't giving up his blood.
His temp was up again so more Tylenol. His SATs were dropping so more O2. Enter in one puzzled and pissed off Pedi that he couldn't figure Dinky out and we were going back to BCCH some time that day. Checked my bags and it turns out I was missing some pretty important stuff. A bottle for Dinky, and all kinds of toiletries for myself. Husby ran out and got all of that for us and then about 1pm he went home and we were on our way to the airport.
Dinky needed O2 on the flight down. We get to BCCH through Emerg and were checked into a room there to be assessed. Fever. More O2, a short nap for me and a few hours later we were moved up into an Isolation room up on the 3rd floor. And in all that time Dinky hadn't really done much nursing wise. Swabs and boogie collections happened and just trying to get him to settle down and sleep for a while.
Blood work. More blood work.. and then I learn that he tested positive for RSV. And THAT'S when things started getting crazy. He needed constant O2 because he wasn't breathing well, constant tracheal pulling and just not happy systems that way. And yet still not eating. My days passed in a constant series of saline nebulizers, nasal and oral suctioning, Tylenol and hitting that damned silencing button on the stupid SAT monitor. 4th day of being there NG tube was brought up and I said I needed to discuss it with my husband. So I did and we decided that feeding via NG would take some of the pressure off of his breathing and relieve him a bit.
So in the first NG went and for the first time in days he was able to get a feed in. 100mls every 3 hours. Medication was given in the NG as well. Swallowing was just toooooo much work for him. Chest x-ray showed his lungs were clear, VICTORY! It took a long time for him to get better. But we saw doctors every day. sometimes two or three times a day.
So now Dinky is on Clobazam. Which is what our pedi prescribed January 11th.
Medications were adjusted. 5ml of Clobazam, Keppra increased to 6mls, 6ml of the peridoxyne (B6), and 2mls of Clonazepam 3 times a day.
Ugh. My brain is so overloaded with all of this it's insane. It's literally working overtime to try and get everything straight. Clobazam was added the day after we were admitted. Metabolics came back that we could stop the B6 sometime in the first 10 days we were there. Clonazepam decrease happened I think the first week we were there?
I got to visit with friends I hadn't seen for a long, long while which was really nice. One kept bringing me food as well! Homecooked food? Yes please! Kept busy with Netflix on my Kobo -- yay for WiFi! Even got to visit with my gramma and great gramma!
And THEN I get a call from my mum that her house was burning down. Made sure that no one was hurt and then called Husby to go up there and help. And you know, grab the kids as they were at the farm...
So really, it's been a very very shitty weird whatthehelldidIeverdotodeservethis kind of start to the year.
So much for point form.
Anyway, we've been home for just over 2 weeks now. We were given a rescue medication just before we left to use if Dinky seizes for 5+ minutes or has a cluster of 3 twitches in 30 minutes.
...and what does he do? On the 8th the little bugger started twitching.Blah blah blah... gave rescue med just as we were getting ready to eat dinner. Husby called mother in law. I called Neuro. Neuro said to up his clobazam to 7.5mls and to give then.
So, 5pm noticed twitching. 5:15 gave rescue. 5:20 called Neuro. Neuro would call me back. 5:40 give the higher dose of Clobazam. 6pm we were in the truck and going to the hospital.
We were home by 10pm that night. The little booger. So higher dose of the rescue as we had to give it to him again... as well as the increase in the Clobazam. Needless to say he's been pretty zombie like. But he IS improving.
And wouldn't you know. Yesterday Tink went down for a nap with a small cough and stuffy nose. Woke up with a seriously goopey eye so Husby took her to the walk-in clinic and came home with a toddler that has the start of double ear infections, sinus infections, swollen tonsils AND PINK EYE. So SHE decided to almost get herself sent to the hospital as we couldn't get her freaking temperature down for ages. 39.7 was the highest I had ever seen it. It was just not very fun.
Okay. I cannot update any more. My brain is just mush. So much for a short, point form...
OH!
Dinky cut his first tooth and has decided that the underside of my nipple needs to be ground flesh. Nursing is SO MUCH FUN!
Subscribe to:
Comments (Atom)