Friday was and has been by far the worst day I have ever had to deal with and I hope that I will never have to deal with something like that again. Yet I know that this is just wishful thinking. I know that this is our life now and I know that days like that will happen again. I can just wish they never happened again as much as I want to, until I get blue in the face. I can wish and wish and wish and wish. I can wish for things to be different. I can hope that things are different. I am really just fooling myself with wishful thoughts. Hopeful, wishful, ignorant, naïve thoughts. Our life is now about seizures. About Dinky's differences.
Medications. Physical therapy, occupational therapy. Seizures. Genetic condition. Global delays. That's Dinky. Our tiny, little, happy and amazing little guy. For every giant step backwards we have small ones forwards.
What made Friday so awful? What made it literally the most hellish day in my existence?
Dinky was fussing for a while around 5am. I tried everything possible to get him back to sleep. He didn't want a bottle. He didn't want to nurse. He didn't want to be swaddled. He didn't want to cuddle. He didn't want anything but to just fuss and be really uncomfortable. And then the twitching started. First they were small, like normal. Twitches led to small clusters. Which led to larger twitches that lasted longer. Which in turn led to one twitch lasting 4-5 seconds. And that longer twitch bled into a full blown generalized tonic-clonic. Husby was sleeping, Dinky between us and after 3 minutes I told him to wake up, that I was going to get the Midaz. I couldn't get the stupid glass vial to open. Husby snapped it open for me and I pulled all of the Midaz into the syringe. I gave Dinky his dose and waited for the full 5 minutes to see if it stopped. It didn't. I called 911 like I was supposed to. He didn't stop.
They showed up and we loaded up into the back of the ambulance. He didn't stop. We left town and he still didn't stop. He had been seizing now for about 15 minutes. The paramedic called the hospital to alert that we were on the way. He didn't stop. Get out of town and she called again to ask if we could give another dose. We could. I dosed him again. He still didn't stop. He started desating. Gave him oxygen and suctioning. And yet he didn't stop.
It is agonizing in the most heart wrenching, gut pulling way. Watching your child seize like that and not being able to do anything. We got to the hospital and ran him in. Didn't even bother pissing around with the stretcher. They just scooped him up and ran him in. Our Ped was hot on our heels. Husby called him when we left to tell him what was going on. Yet Dinky was still seizing. A temp check, more Midaz (this time rectally) and our Ped slapped in an IV into his scalp and jammed him full of more Midaz. Once that drug entered his system intravenously, he finally stopped. After an hour. He. Finally. Stopped.
Our Ped called down to Children's to see what they wanted him to do. He called 4 people and finally called someone higher up in the chain to see what the hell is going on and why no one wants to call him back. So we were told to increase his Topamax. Our Ped asked if they wanted us to send Dinky back down and they said no. The only thing that they would do would be to wake him up and send him home. So Dinky had a deadline of 12pm to wake up on his own. They tried to get blood to run lab work on him and they stuck him in so many places. Heels, ankles, feet, hands, wrists, elbows and they even tried his neck. Twice. Finally out of his fingers they were able to get the basic tests done but that was it.
12pm came around and Dinky woke up on his own and was fine for a few minutes and once again started twitching. More Midaz. Our Ped came back in after the 5th dose and said that maybe it was just the Midaz working out of his system, which was why he was twitching. He went back to continue on with his day. Dinky woke up out of the Midaz daze and sure enough his legs started jerking and twitching non-stop again. 6th dose of Midaz. Turns out the twitching was the start of another seizure and the Midaz stopped it and yet as soon as it wore off, it came back. So our Ped came back in and he called back down to Children's to fill them in on what was going on. They wanted us to come back down.
Transport was supposed to pick us up after 6pm. 8:30pm. Changed to 11pm. Which got changed to in the morning if he wasn't doing any better. We got moved out of the trauma room that we had been in all day and it seemed like things were going fairly well.
The next morning the twitching started again so the nurses gave him another dose of Midaz and his medication early. As well as Lactulose. Apparently it was news to our Ped that Dinky was constipated. Yet he's always suffered from constipation. So first of three doses of Lactulose for him. The first dose he tolerated fairly well. Until he decided to vomit up bright greeny-yellow goop which turned out to be bile. Gross.
Second dose he once again gagged and tried to vomit. Seemed silly to me that they wanted to give him three doses of the stuff even though the first one was working. Very, very well. Evening came rolling around and with that his medication. Got that into him and his final dose of Lactulose. Which he promptly threw up. I pressed the call button, needing new bedding and to alert them that Dinky had thrown up. All that happened was they turned the call off. Nice.
So almost an hour (I think) later someone came in and I told them what happened. She went and phoned our Ped after she remade our bed. And guess what? Dinky needed all of his medication again. Because the nurses didn't see how much he had actual expelled. ...well excuse me but if someone presses the damn call button, generally freaking means to get into the room and see what the need was. Seems simple enough to me.
The next morning we got the all clear to come home. Thank goodness. No trip to Children's for us. Get home and Husby went to get Tink. Who came home, settled into his lap and proceeded to throw up. Great. Just what I want to deal with. Puke everywhere. She nailed Husby like a champ. Poor guy. She also got me really well. Thank goodness for Gravol.
...which brings us to last night. Tink fell asleep just before 5. Woke her up just after 6 and she was back in bed at 7:30. Thought she would be up at some awful hour but she woke up just after 6. Sleep does the body good. Dinky however was throwing up quite often last night. I had to give him 3 doses of his medications because just after he had them, he threw them right back up.
Have I mentioned how much I hate puke?
I hate it. It's so gross.
It is really, really hard being strong all the time. The last few days I've been so ... off emotionally, which is understandable. No one needs to be strong all the time. In fact it can be really exhausting. I know that I'm allowed to have bad days. I'm allowed to be sad for Dinky. I'm allowed to be sad for what the future holds. I'm ALLOWED to feel upset. And you know what?
It's okay.
It's okay to feel the giant amounts of feelings that comes with situations that are way, way over your head and so far out of control you might as well be an astronaut trying to land on the moon. backwards. In a tin can full of marbles. And the moon is made of slippery Jell-O. And your tin can has no windows. Or controls for that matter. You just have a balloon and a paperclip to try to land that sucker you're stuck in.
Needless to say it has been all kinds of crazy for the last little while. I'm allowed to have bad days. The important thing is that I don't let it consume me so that all I am is sad. That is not our life. Our life has sad moments. Our life is not sad. Our life has sad moments. Those moments we cannot control, however, there are always new tomorrows.
And tomorrows give you a new day. How I handle life is up to me. I refuse to let some deep dark pit chew on me. So while I have bad days, I have many more good ones.
Tuesday, 28 April 2015
Thursday, 16 April 2015
Kitty caves and the Wingbo
A handful of weeks ago we bought Tink a new carseat (the one that we had previously has become her spare seat for when Husby is working and we need to go somewhere) and like normal it came in a giant box, which for her was about a thousand times better than her new seat. The first few days it was sitting in the dining room she would run and hide in it. Now she runs, hides and meows sadly. So you have to call her "Here kitty, kitty kitty!!" To which she comes crawling out meowing like mad, lays her head on your lap (or sits beside you) and waits to have her head petted. Repeat the process about a hundred times a day (mostly at dinner of course) and that's the life of our Kitty Tink. She's become obsessed with cats and I mean obsessed. It's become quite the problem to the point where we are actually thinking about thinking about getting a kitten.
Last night I was surfing around our local kids buy and sell and managed to snag an amazing deal on clothes for her, so needless to say Tink is good for clothes until at LEAST next summer! The only think she will need new is socks and undies. Buying those secondhand is a little creepy. I'm just not comfortable with that.
Dinky needs more clothes soon. It's hard finding things for him as he's a summer baby and the sizes we need most people have winter clothes. Won't work for us but I'm hopeful someone will have a bunch of clothes second hand for us! If not? Fingers crossed we can find some brand new for cheap. I just don't like buying new most of the time for babies as they grow out of things so fast.
Except for Dinky. He's in a solid 6-9 months! Has been for about a month now and I'm looking for 9-12 months summer clothes for him and if possible fall/winter clothes in 12/12-18month. So, a huntin' I go.
R2D2 isn't getting new clothes until closer to the end of summer/start of the new school year. I don't know why but summer vacation seems to be the time of year when kids grow the most so there really isn't much point in getting him much of anything just yet. Darn children always seem to grow faster than they should.
Except Dinky. Length-wise he's really long. Weight... ugh. We met with our Pedi yesterday just to touch bases and see how Dinky is doing. He's lost some weight which I guess can be normal on these medications. Nott something I like hearing. Last week Dinky was 6.91kg this week he is 6.82kg. Not a huge loss but a loss nonetheless. Neither our Pedi or the health nurse are overly concerned just yet and I think they both feel that until there's a pattern of weight loss...we don't have much to worry about. I'm not happy with the sit and see so I'm trying to do everything that I can to get more calories into the little guy.
PT came over last week about brought a piece of equipment called the Wingbo. It's a tummy time frame. It has this contoured piece of plastic that you lay on that is suspended on a frame. Feet can touch the floor so that when you're on your tummy, you can rock back and forth. Dinky isn't a fan of it and every time he's in it I can assure you t hat his lungs get a workout and a half. BUT when he's mad he tenses up and is able to lift his head. Progress! When he's laying on my chest and we're doing reclined tummy time I've also been able to notice some pressure coming from his arms. A lovely, lovely thing to feel! PT has also suggested wearing him in the Tula a lot more often to help gain some head control. All the more reason to wear the Tula is great for me!
The start of this new medication has decreased the number of seizures and jerks Dinky has been having but they haven't stopped all together. From what I've been told and from what I understand, myoclonic epilepsy is hard to stop altogether. They aren't able to fully stop the seizures but are able to help decrease the number of them that he does have. The only drawback is that it's taking him a while to get used to it. Every dose increase he has makes him really tired. Tuesday's are dose changes and with his evening dose change this week he fell asleep at 9:30pm with only 20ml of formula in him and slept straight through. Last night really wasn't any better. I hope he gets used to it soon.
Summer is fast approaching and with that Dinky's first birthday. It's hard to think of a gift for him. We have enough toys from Tink, clothing will be needed but I would really, really love a patchwork quilt for him. Something with pirates and ocean life in bright colours. Greens, oranges....blues...might need to learn how to quilt. Or even sew properly.
I've become a Supernatural addict. Not sure how I feel about this because it's kind of scary how wrapped up I've gotten in the Winchester boys... I think I might possibly need a hobby.
Last night I was surfing around our local kids buy and sell and managed to snag an amazing deal on clothes for her, so needless to say Tink is good for clothes until at LEAST next summer! The only think she will need new is socks and undies. Buying those secondhand is a little creepy. I'm just not comfortable with that.
Dinky needs more clothes soon. It's hard finding things for him as he's a summer baby and the sizes we need most people have winter clothes. Won't work for us but I'm hopeful someone will have a bunch of clothes second hand for us! If not? Fingers crossed we can find some brand new for cheap. I just don't like buying new most of the time for babies as they grow out of things so fast.
Except for Dinky. He's in a solid 6-9 months! Has been for about a month now and I'm looking for 9-12 months summer clothes for him and if possible fall/winter clothes in 12/12-18month. So, a huntin' I go.
R2D2 isn't getting new clothes until closer to the end of summer/start of the new school year. I don't know why but summer vacation seems to be the time of year when kids grow the most so there really isn't much point in getting him much of anything just yet. Darn children always seem to grow faster than they should.
Except Dinky. Length-wise he's really long. Weight... ugh. We met with our Pedi yesterday just to touch bases and see how Dinky is doing. He's lost some weight which I guess can be normal on these medications. Nott something I like hearing. Last week Dinky was 6.91kg this week he is 6.82kg. Not a huge loss but a loss nonetheless. Neither our Pedi or the health nurse are overly concerned just yet and I think they both feel that until there's a pattern of weight loss...we don't have much to worry about. I'm not happy with the sit and see so I'm trying to do everything that I can to get more calories into the little guy.
PT came over last week about brought a piece of equipment called the Wingbo. It's a tummy time frame. It has this contoured piece of plastic that you lay on that is suspended on a frame. Feet can touch the floor so that when you're on your tummy, you can rock back and forth. Dinky isn't a fan of it and every time he's in it I can assure you t hat his lungs get a workout and a half. BUT when he's mad he tenses up and is able to lift his head. Progress! When he's laying on my chest and we're doing reclined tummy time I've also been able to notice some pressure coming from his arms. A lovely, lovely thing to feel! PT has also suggested wearing him in the Tula a lot more often to help gain some head control. All the more reason to wear the Tula is great for me!
The start of this new medication has decreased the number of seizures and jerks Dinky has been having but they haven't stopped all together. From what I've been told and from what I understand, myoclonic epilepsy is hard to stop altogether. They aren't able to fully stop the seizures but are able to help decrease the number of them that he does have. The only drawback is that it's taking him a while to get used to it. Every dose increase he has makes him really tired. Tuesday's are dose changes and with his evening dose change this week he fell asleep at 9:30pm with only 20ml of formula in him and slept straight through. Last night really wasn't any better. I hope he gets used to it soon.
Summer is fast approaching and with that Dinky's first birthday. It's hard to think of a gift for him. We have enough toys from Tink, clothing will be needed but I would really, really love a patchwork quilt for him. Something with pirates and ocean life in bright colours. Greens, oranges....blues...might need to learn how to quilt. Or even sew properly.
I've become a Supernatural addict. Not sure how I feel about this because it's kind of scary how wrapped up I've gotten in the Winchester boys... I think I might possibly need a hobby.
Monday, 6 April 2015
Hospital stays and beyond.
I just finished reading my last blog post. Hard to remember what was said and what wasn't when it's been a fair bit of time since I've written anything. Currently the house is free from the sick bugs. Small, tiny creatures I hope don't visit again any time soon. It doesn't help that R2D2 is in school which seems to be a petri dish for breeding germs and all things associated with those terrible little beasts. Fingers crossed they don't come back. Is there some plant or trap I can hang up in my windows and doors to ward off the vile little germs?! If not, there should be. Catch the sicknesses in a small web like spiders. Someone needs to come up with something. I would buy it.
Dinky is now just over 15lbs! An exciting yet small milestone for us there! But more on him in a little bit.
Easter was a very fun time for the big kids! Started off with their little goodie hunt. R2D2 got a Creeper ... toy ... thing which made him very happy, Tink got a tea set (finally, we've only been talking about it for ages!) and Dinky got a few small things like a new Lulujo, a Lamaze toy and a new bib. And than, SURPRISE! New bikes for the big kids! R2D2 was due for a new one. The one he was using previously made his knees go up to his ears -- okay not quite but close! Tink got a Stride Bike that she's not quite sure what to do with it yet, but she's smart and will figure it out sooner or later. I'm baking on the sooner.
My parents came over for a turkey dinner and brought the kids a few gifts of their own. R2D2 has become extremely fascinated with graphic novels and one day during an outing to the thrift store we found the first book to a series so mum grabbed him the second one. I'm not going to complain! He loves them. Graphic novels and Where's Waldo type books. Whatever captures his interest reading wise is fine with me!
Tinks vocabulary expands almost daily. Both fun and frightening as I'm pretty sure she was trying to cuss the other day while in the basement with her dad who was cussing over a project that didn't go the way he had planned it. Than again, nothing ever really goes as planned. Ever. Because why should something follow plans when it decides to make its own?! Plans make things simple and easy. Can't have that now can we? Why would we ever want that?
Last Saturday (Match 28th) things were finalized with our Pedi for getting us back down to BCCH. He finally got a hold of our neurologist who agreed that the medication Dinky was on just wasn't working the way it should. So she wanted another EEG done to see what, if anything, had changed and in order for that to happen we needed to be admitted into our local hospital for transfer to be admitted into BCCH. Sunday we were transported down and went through a whole bunch of repeat questions about pregnancy, delivery...blah blah blah. Let me tell you, repeating everything gets extremely tedious.
At 28 weeks was diagnosed with Polyhydramnios. Ultrasounds weekly after 30 weeks as well as NST and weekly doctors appointments. As far as they could tell there was no cause for the extra fluid. Birth was induced after a bedside ultrasound on the 24th at 6am to determine how he was positioned as he had just been Frank breech the week before but head down during C-section referral. Broke water at 8am with the help of another doctor, Pitocin started at 8:30am and had him at 6:10pm. Born with fluid in his right lung and his left was sticky. Pediatrician came in and assessed, did a chest x-ray. Feeding problems due to him being sleepy. Low blood sugars for the first 2 or 3 days. Nursed and then gave formula to up his sugar levels. Feeding fine after the first 2 weeks. Have noticed almost right from birth his hypotonic state, assessed by neuro, started genetics blood work in November and referral for MRI. First seizure activity started December 31, a few every couple of days. First cluster January 10. January 11 another cluster for approximately 45 minutes, went to ER started Clobazam. Follow up with Ped on the 13th. Got a call on the 14th that Neuro wanted us admitted for possible infantile spasms. EER, MRI and lumbars the following week. Showed myoclonic epilepsy/seizure disorder. First generalized seizure February 1st for 8 minutes. Second was the 13th for 20...
It makes my head spin. I'm sure I repeated all that information about a dozen times to a dozen different people. His repeat EEG didn't really show much at all. Of course he didn't have any of his jerking seizure episodes during it. One or two very small local ones. One in his shoulder and one in his leg. That was it. Everything happened AFTER they disconnected him from the head things.
Saw the cranial surgeon as well. So far Dinky doesn't need to have surgery to fix his bean but if his head doesn't keep growing it will be revisited and reassessed. New medication added into the mix and one was taken away. As well as a weaning schedule for his Clobazam. I'm not going to get overly excited over this new medication until it's been in his system for a month. All of the other ones have gone and proven themselves ineffective after the first two weeks. But I have noticed a difference in him.
He's still having the occasional twitching/seizure but not nearly as many as he had been having. His eye contact has improved tremendously as he is more willing to hold your gaze for minutes at a time. He's also a little more active. Down side is I have noticed a small decrease in his appetite so I do need to watch that. Cannot have him not eating.
I am excited for the time at home. I'm excited to be back at home. I'm excited for what PT is going to start doing with him as I would LOVE to have him have more head control by his birthday. That's going to be my goal to work on with him. July is still many months away so I don't see why it won't happen! But, things happen the way they happen for a reason. July = more head control. July = first birthdays, more specialist appointments and who knows what else.
Hopefully a garden as well! Husby has been so busy with so many other projects around the house. Our pantry/laundry room is being revamped. Last night before work he put up the first coat of paint so the next coat will be done in a few days and hopefully shelves will be going up this week. As it stands, everything is in Dinky's room. Not that he's using it or anything.
Time to start looking into movement monitors that alert with abnormal movements. I shall be bringing it up with my IDP when I see her an PT on Wednesday. I would love for Dinky to be in his room by his birthday but I just don't feel comfortable with the thought just yet. A movement monitor would probably help me immensely in making that transition.
So. Fingers crossed!
Dinky is now just over 15lbs! An exciting yet small milestone for us there! But more on him in a little bit.
Easter was a very fun time for the big kids! Started off with their little goodie hunt. R2D2 got a Creeper ... toy ... thing which made him very happy, Tink got a tea set (finally, we've only been talking about it for ages!) and Dinky got a few small things like a new Lulujo, a Lamaze toy and a new bib. And than, SURPRISE! New bikes for the big kids! R2D2 was due for a new one. The one he was using previously made his knees go up to his ears -- okay not quite but close! Tink got a Stride Bike that she's not quite sure what to do with it yet, but she's smart and will figure it out sooner or later. I'm baking on the sooner.
My parents came over for a turkey dinner and brought the kids a few gifts of their own. R2D2 has become extremely fascinated with graphic novels and one day during an outing to the thrift store we found the first book to a series so mum grabbed him the second one. I'm not going to complain! He loves them. Graphic novels and Where's Waldo type books. Whatever captures his interest reading wise is fine with me!
Tinks vocabulary expands almost daily. Both fun and frightening as I'm pretty sure she was trying to cuss the other day while in the basement with her dad who was cussing over a project that didn't go the way he had planned it. Than again, nothing ever really goes as planned. Ever. Because why should something follow plans when it decides to make its own?! Plans make things simple and easy. Can't have that now can we? Why would we ever want that?
Last Saturday (Match 28th) things were finalized with our Pedi for getting us back down to BCCH. He finally got a hold of our neurologist who agreed that the medication Dinky was on just wasn't working the way it should. So she wanted another EEG done to see what, if anything, had changed and in order for that to happen we needed to be admitted into our local hospital for transfer to be admitted into BCCH. Sunday we were transported down and went through a whole bunch of repeat questions about pregnancy, delivery...blah blah blah. Let me tell you, repeating everything gets extremely tedious.
At 28 weeks was diagnosed with Polyhydramnios. Ultrasounds weekly after 30 weeks as well as NST and weekly doctors appointments. As far as they could tell there was no cause for the extra fluid. Birth was induced after a bedside ultrasound on the 24th at 6am to determine how he was positioned as he had just been Frank breech the week before but head down during C-section referral. Broke water at 8am with the help of another doctor, Pitocin started at 8:30am and had him at 6:10pm. Born with fluid in his right lung and his left was sticky. Pediatrician came in and assessed, did a chest x-ray. Feeding problems due to him being sleepy. Low blood sugars for the first 2 or 3 days. Nursed and then gave formula to up his sugar levels. Feeding fine after the first 2 weeks. Have noticed almost right from birth his hypotonic state, assessed by neuro, started genetics blood work in November and referral for MRI. First seizure activity started December 31, a few every couple of days. First cluster January 10. January 11 another cluster for approximately 45 minutes, went to ER started Clobazam. Follow up with Ped on the 13th. Got a call on the 14th that Neuro wanted us admitted for possible infantile spasms. EER, MRI and lumbars the following week. Showed myoclonic epilepsy/seizure disorder. First generalized seizure February 1st for 8 minutes. Second was the 13th for 20...
It makes my head spin. I'm sure I repeated all that information about a dozen times to a dozen different people. His repeat EEG didn't really show much at all. Of course he didn't have any of his jerking seizure episodes during it. One or two very small local ones. One in his shoulder and one in his leg. That was it. Everything happened AFTER they disconnected him from the head things.
Saw the cranial surgeon as well. So far Dinky doesn't need to have surgery to fix his bean but if his head doesn't keep growing it will be revisited and reassessed. New medication added into the mix and one was taken away. As well as a weaning schedule for his Clobazam. I'm not going to get overly excited over this new medication until it's been in his system for a month. All of the other ones have gone and proven themselves ineffective after the first two weeks. But I have noticed a difference in him.
He's still having the occasional twitching/seizure but not nearly as many as he had been having. His eye contact has improved tremendously as he is more willing to hold your gaze for minutes at a time. He's also a little more active. Down side is I have noticed a small decrease in his appetite so I do need to watch that. Cannot have him not eating.
I am excited for the time at home. I'm excited to be back at home. I'm excited for what PT is going to start doing with him as I would LOVE to have him have more head control by his birthday. That's going to be my goal to work on with him. July is still many months away so I don't see why it won't happen! But, things happen the way they happen for a reason. July = more head control. July = first birthdays, more specialist appointments and who knows what else.
Hopefully a garden as well! Husby has been so busy with so many other projects around the house. Our pantry/laundry room is being revamped. Last night before work he put up the first coat of paint so the next coat will be done in a few days and hopefully shelves will be going up this week. As it stands, everything is in Dinky's room. Not that he's using it or anything.
Time to start looking into movement monitors that alert with abnormal movements. I shall be bringing it up with my IDP when I see her an PT on Wednesday. I would love for Dinky to be in his room by his birthday but I just don't feel comfortable with the thought just yet. A movement monitor would probably help me immensely in making that transition.
So. Fingers crossed!
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