When you write a nice long blog all about how you're brains are scrambled and you lost your car keys and house keys by leaving them on the top of the car and went to a birthday party a week early and then Blogger manages to eat it before it actually posts!
I can't write it all out again, but that's the gist of it.
Steroids are over, I didn't have a fever just lots of flushing as a side effect. Brain is still a bit scrambled and very sleepy, eyesight no better - actually a bit worse.
Kids are great and it's nearly time to go home, yippee!
Monday, June 19, 2006
Friday, June 16, 2006
Steroids - day 2
The nurse was right on time yesterday and I was hooked up to bag #2 by 5:15. She also taught me how to flush the line and how to hook the meds up myself (although she's still planning on coming everyday). 90 minutes later she came back and there's still a fair amount of meds left, it finally finishes after 2 hours! It's hurting a little, so she checks the line and my vein isn't particulary happy so I get to pull it out (yippee). They'll put in a new line tonight which will hopefully stay in for the final 3 days.
No noticable increase in vision yet, but I wasn't expecting it to resolve that quickly.
I've been sleeping great the last couple of nights, which is odd considering that one of the most common side effects is insomnia. As I came into work today I noticed that my cheeks feel really hot, so I'm wondering if I have a fever - if it hasn't gone away by lunchtime then I may just go home (the meds suppress your immune system).
I'll keep you posted.
No noticable increase in vision yet, but I wasn't expecting it to resolve that quickly.
I've been sleeping great the last couple of nights, which is odd considering that one of the most common side effects is insomnia. As I came into work today I noticed that my cheeks feel really hot, so I'm wondering if I have a fever - if it hasn't gone away by lunchtime then I may just go home (the meds suppress your immune system).
I'll keep you posted.
Thursday, June 15, 2006
Steroids - day 1
Well after many phone calls and misunderstandings yesterday I arrived home at just after 4pm to a phone call saying the man from the pharmacy was outside my house with the medical supplies, closely followed by a call from the home health nurse to say that she would be there by 5pm to administer my first dose. An hour earlier when I left work it was all still being worked on!
So I've got 2 bags of medical supplies sitting in my kitchen, filled with syringes, gloves, tape, needles, tape, heparin, saline and other assorted medical stuff. Then I have these very strange looking brown balls of medicine sitting in my fridge.
The nurse came right on time and after about 10 minutes of looking finally found a vein that looked good (my veins are deep and hard to find). It's in the back of my left hand, stung a little when it went in but just for a second. Tape goes over the IV to hold it in place and the tubing is taped up my arm. The meds get hooked up and away we go! Those balls of medicine are actually pretty clever little things, rather than being hooked up to an IV pole they have their own little pump so you can walk around with it in your pocket (or stuffed down your shirt it you're like me and didn't have any pockets). It slowly deflates as the medicine is pumped in and 90 minutes later can all be disconnected. Then it's time to flush the line (see already getting the medical terms) with saline and then with heparin to stop it clotting.
The actual treatment was non eventful apart from a disgusting metallic taste in my mouth that lasted up until I went to bed. I couldn't even eat my very favourite strawberry ice lolly because it just tasted yuck. I've read up on the Internet and the advice seems to be to suck sour sweets to take the taste away so I'll try that this evening.
The boys came and asked what the medicine was and what the stuff hanging out of my hand is but they're being very good, didn't even try and pull on the wires, which I'm most surprised about.
This IV will stay in for 3 days and then they'll insert a new one for the last 2 treatments. I am allowed to remove it if I really want to or if it looks irritated but that just means I'll end up with even more needle sticks so I'm trying to keep it in. I've already made 2 people at work queasy when they asked why I had a bandage on my hand and I told them I had an IV in - hee hee they shouldn't ask if they don't really want to know.
So I've got 2 bags of medical supplies sitting in my kitchen, filled with syringes, gloves, tape, needles, tape, heparin, saline and other assorted medical stuff. Then I have these very strange looking brown balls of medicine sitting in my fridge.
The nurse came right on time and after about 10 minutes of looking finally found a vein that looked good (my veins are deep and hard to find). It's in the back of my left hand, stung a little when it went in but just for a second. Tape goes over the IV to hold it in place and the tubing is taped up my arm. The meds get hooked up and away we go! Those balls of medicine are actually pretty clever little things, rather than being hooked up to an IV pole they have their own little pump so you can walk around with it in your pocket (or stuffed down your shirt it you're like me and didn't have any pockets). It slowly deflates as the medicine is pumped in and 90 minutes later can all be disconnected. Then it's time to flush the line (see already getting the medical terms) with saline and then with heparin to stop it clotting.
The actual treatment was non eventful apart from a disgusting metallic taste in my mouth that lasted up until I went to bed. I couldn't even eat my very favourite strawberry ice lolly because it just tasted yuck. I've read up on the Internet and the advice seems to be to suck sour sweets to take the taste away so I'll try that this evening.
The boys came and asked what the medicine was and what the stuff hanging out of my hand is but they're being very good, didn't even try and pull on the wires, which I'm most surprised about.
This IV will stay in for 3 days and then they'll insert a new one for the last 2 treatments. I am allowed to remove it if I really want to or if it looks irritated but that just means I'll end up with even more needle sticks so I'm trying to keep it in. I've already made 2 people at work queasy when they asked why I had a bandage on my hand and I told them I had an IV in - hee hee they shouldn't ask if they don't really want to know.
Wednesday, June 14, 2006
Urghh
So my next update was going to be all about Kieran, and I do have it half written, but then my vision started going again and I HATE it.
It seems like I get 2 weeks of good vision and then it all starts to blur again, I worked out that this year I've probably had a grand total of 6 weeks of good vision and it's starting to get me down.
I went back to the opthamologist yesterday and sure enough my right eye is back down to 20/50 (20/40 or better is what you need for driving). It just feels like this is never going to go away [insert sound of violins here which are playing for my pity party]
The good news is that they're going to try a treatment this time. I'm going to be hooked up to a bag of high dose IV steroids for an hour a day for 5 days. Hopefully they will battle the inflammation that is causing the blurred vision and I'll get better sooner. The downside is that steroids have side effects - fluid retention, rounding of the face, acne, increased appetite, sleep problems and anxiety. So I'll be swapping blurred vision for looking like the Michelin man, but right now that sounds good to me.
I'll let you know how things go and I will get that Kieran update out.
It seems like I get 2 weeks of good vision and then it all starts to blur again, I worked out that this year I've probably had a grand total of 6 weeks of good vision and it's starting to get me down.
I went back to the opthamologist yesterday and sure enough my right eye is back down to 20/50 (20/40 or better is what you need for driving). It just feels like this is never going to go away [insert sound of violins here which are playing for my pity party]
The good news is that they're going to try a treatment this time. I'm going to be hooked up to a bag of high dose IV steroids for an hour a day for 5 days. Hopefully they will battle the inflammation that is causing the blurred vision and I'll get better sooner. The downside is that steroids have side effects - fluid retention, rounding of the face, acne, increased appetite, sleep problems and anxiety. So I'll be swapping blurred vision for looking like the Michelin man, but right now that sounds good to me.
I'll let you know how things go and I will get that Kieran update out.
Thursday, June 01, 2006
Kids update part I - Callum
What can I say about my gorgeous, mischievous, happy, TV addicted, music loving, noodle eating little boy.
He's grown up so much in the last few months, it's hard to believe that he's been walking for less than a year, the days of him crawling at super high speeds seem like such a long time ago. He moved to the 3 year old class at school about a month ago and is doing great, he's back with all his friends. When he's the oldest in his class he doesn't have the role models that he needs so he was getting a little bored and when he's bored he gets that wicked glint in his eye that you just know means trouble is not far away. We had a big meeting with the day care director and all have decided that it's better for Callum that he be picked up earlier in the day from day care as he tends to go a little wild after nap and doesn't always want to cooperate with what the class is doing. We've decided that for the next 3 months I'll cut down my hours at work (hope HR agrees! I have a meeting with them tomorrow) so that I can pick him up by 3:30. I'm really looking forward to having a couple of hours of Callum time each day and am already making plans for swimming and maybe a music or gym class.
In September everything is going to change again because Callum will be starting proper school! Officially he was supposed to start as soon as he turned 3 but we just didn't like the class that he was offered, so we decided to wait until September when he'll have a place in a collaborative class with a mix of kids with special needs and typical peers. I'm not sure exactly which school yet as there are 2 that offer this kind of class but I'm feeling pretty positive about it.
I really hate the way they do the transition from the birth-3 program to the school district in this area. As soon as your child turns 3 all responsibility for therapies etc. is turned over to the school district. The school district by law needs to offer your child the least restrictive environment, however unless your kids birthday happens to be the beginning of September then you are likely to find that all the classes that involve inclusion are full and that the only spaces available are purely special education classes with little or no inclusion. Do not pass Go, Do not collect $200 go straight to the most restrictive environment because that's all we have available, grrrrrr. After several meetings and phone calls with various people from the school district we decided to keep Callum in his current private school until September and the school district are going to compensate us financially. I don't see why they can't just leave kids in the birth-3 program until the start of the next school year after they turn 3 - would that really be so difficult!
Rant over, back to Callum.
Health wise he's doing pretty good, he had a cough/chest infection that just wouldn't go away so just finished a course of antibiotics for that. Usually we have to pin him down to give him medicine and then he spits most of it back out again and everyone ends up frustrated and sticky, but he was great this time. The pharmacist gave us a new medicine spoon to try that Callum can actually do himself and it worked great. He'd grab the spoon (it's got a hollow handle where the medicine goes and then a shovel like spoon bit) go off to his little corner so we wouldn't interfere and then drained the spoon of every last drop and came back and asked for more! We also had a check up with a cardiologist as his regular doctor thought she heard a murmur, good news everything is normal so that really should be the end of any more cardio visits. We saw 2 doctors, the first was a resident I think and he was great - he shook Callum's hand which Callum thought was wonderful and he couldn't stop grinning. The "real" doctor did high-5's with Callum and said he was his best patient ever because he sat so still and didn't complain at all during the exam.
Callum is doing well overall, he'll walk up and down small kid sized stairs holding the rail. Adult sized stairs he'll walk down holding the rail with one hand and one of our hands with the other. He's getting stronger and stronger and hardly needs our hand support especially going up the stairs, but I think it'll be a while before he has the confidence to do it on his own. He actually climbed a ladder at a local playground which is something his PT has been trying to get him to do for months. We did help with his foot positioning but he pulled himself up and was getting the hang of the coordination. Speech is coming along slowly but surely, he'll attempt the vast majority of words but his articulation still needs a lot of work. We're really trying to encourage him to put words together and he will do "more please" with only a little prompting. He's really trying to have conversations and will go to great lengths to describe what he wants. Example he's recently decided that he likes the movie "Ice Age" - so this is how he asks - makes sound and sign for Elephant, makes sign for Squirrel, says baby, says lion and does a roooar and them mimes some of the movements that he remembers [The movie is about a mammoth, sabre tooth tiger & sloth who rescue a human baby and have adventures while returning it to it's father. There's a little squirrel like create that shows up at various points in the movie].
Wow, sorry for such a long post - reminder to myself post less, more often. Last but not least he's almost given up his pacifier (dummy) he's done without it at night time for over a week now and has never even asked for it. He is still using it for nap at day care because it's become a real part of his nap time routine. We're confident then when he moves from day care to school in September that the paci will be gone for good. I was dreading taking it away but it's been really really easy and another step towards being a big boy (next step potty training, eeek)
He's grown up so much in the last few months, it's hard to believe that he's been walking for less than a year, the days of him crawling at super high speeds seem like such a long time ago. He moved to the 3 year old class at school about a month ago and is doing great, he's back with all his friends. When he's the oldest in his class he doesn't have the role models that he needs so he was getting a little bored and when he's bored he gets that wicked glint in his eye that you just know means trouble is not far away. We had a big meeting with the day care director and all have decided that it's better for Callum that he be picked up earlier in the day from day care as he tends to go a little wild after nap and doesn't always want to cooperate with what the class is doing. We've decided that for the next 3 months I'll cut down my hours at work (hope HR agrees! I have a meeting with them tomorrow) so that I can pick him up by 3:30. I'm really looking forward to having a couple of hours of Callum time each day and am already making plans for swimming and maybe a music or gym class.
In September everything is going to change again because Callum will be starting proper school! Officially he was supposed to start as soon as he turned 3 but we just didn't like the class that he was offered, so we decided to wait until September when he'll have a place in a collaborative class with a mix of kids with special needs and typical peers. I'm not sure exactly which school yet as there are 2 that offer this kind of class but I'm feeling pretty positive about it.
I really hate the way they do the transition from the birth-3 program to the school district in this area. As soon as your child turns 3 all responsibility for therapies etc. is turned over to the school district. The school district by law needs to offer your child the least restrictive environment, however unless your kids birthday happens to be the beginning of September then you are likely to find that all the classes that involve inclusion are full and that the only spaces available are purely special education classes with little or no inclusion. Do not pass Go, Do not collect $200 go straight to the most restrictive environment because that's all we have available, grrrrrr. After several meetings and phone calls with various people from the school district we decided to keep Callum in his current private school until September and the school district are going to compensate us financially. I don't see why they can't just leave kids in the birth-3 program until the start of the next school year after they turn 3 - would that really be so difficult!
Rant over, back to Callum.
Health wise he's doing pretty good, he had a cough/chest infection that just wouldn't go away so just finished a course of antibiotics for that. Usually we have to pin him down to give him medicine and then he spits most of it back out again and everyone ends up frustrated and sticky, but he was great this time. The pharmacist gave us a new medicine spoon to try that Callum can actually do himself and it worked great. He'd grab the spoon (it's got a hollow handle where the medicine goes and then a shovel like spoon bit) go off to his little corner so we wouldn't interfere and then drained the spoon of every last drop and came back and asked for more! We also had a check up with a cardiologist as his regular doctor thought she heard a murmur, good news everything is normal so that really should be the end of any more cardio visits. We saw 2 doctors, the first was a resident I think and he was great - he shook Callum's hand which Callum thought was wonderful and he couldn't stop grinning. The "real" doctor did high-5's with Callum and said he was his best patient ever because he sat so still and didn't complain at all during the exam.
Callum is doing well overall, he'll walk up and down small kid sized stairs holding the rail. Adult sized stairs he'll walk down holding the rail with one hand and one of our hands with the other. He's getting stronger and stronger and hardly needs our hand support especially going up the stairs, but I think it'll be a while before he has the confidence to do it on his own. He actually climbed a ladder at a local playground which is something his PT has been trying to get him to do for months. We did help with his foot positioning but he pulled himself up and was getting the hang of the coordination. Speech is coming along slowly but surely, he'll attempt the vast majority of words but his articulation still needs a lot of work. We're really trying to encourage him to put words together and he will do "more
Wow, sorry for such a long post - reminder to myself post less, more often. Last but not least he's almost given up his pacifier (dummy) he's done without it at night time for over a week now and has never even asked for it. He is still using it for nap at day care because it's become a real part of his nap time routine. We're confident then when he moves from day care to school in September that the paci will be gone for good. I was dreading taking it away but it's been really really easy and another step towards being a big boy (next step potty training, eeek)
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