El had a tune-up in the middle of October, even though she only cultured staph. She had trouble getting a picc line, so had a central line in her neck, which actually was less traumatic for getting hooked up to her IV. We came home for the second week of treatment which was great! Removal of the central line was horrible (so many stitches).
Since the admission her cough has cleared up and she has put on lots of weight!! Her meds and physio have also changed. So I'll put a list below.
1 abdek capsule/day
3mls iron/day
creon 10000 1/6g fat
6 puffs ventolin
4mls 4% hypertonic saline (nebulised)
The ventolin and hypertonic are done before her physio, which is mainly PEP and jumping on the trampoline. At the moment because she is so well we are only doing physio once a day.
Friday, December 9, 2011
Tuesday, December 6, 2011
Homeschooling
We are officially on Christmas Holidays!! J has been enrolled for 6 months now, and yesterday finished his last PACE for the year! Next year J and Em will both be enrolled, so I have to fill out some paperwork, pay some money and order next terms school books, and we will be all organised for next year.
As far as the holidays go we have no big plans just little ones. I also want to get cupboards etc. cleaned out before we start school again next year, and also look after this neglected blog a little better, but for now I am happy to be looking at the start of a few weeks with no schoolwork!
As far as the holidays go we have no big plans just little ones. I also want to get cupboards etc. cleaned out before we start school again next year, and also look after this neglected blog a little better, but for now I am happy to be looking at the start of a few weeks with no schoolwork!
Wednesday, June 29, 2011
Cleft Stuff
Compared to the first couple of years with miss Em, this is a relatively quiet time. The first two years in particular were filled with appointments: plastic surgery, ENT, hearing tests, speech, etc... This year we have been to one speech appointment, one dentist appointment and one with her orthodontist. Not bad for half way through the year!! We should have seen the plastic surgeon last year, but he is on long service leave, so it could be a while before we see him.
In some rather exciting news Miss Em has her first wiggly tooth! So we now have a competition on our hands to see who will lose their tooth first, J (who has his 7th or 8th wiggly tooth, I am not sure which he has lost quite a few) or Em! My money is on Em as she wiggles her's constantly, and J doesn't wiggle his and it has been wiggly for about 6 months already!
In some rather exciting news Miss Em has her first wiggly tooth! So we now have a competition on our hands to see who will lose their tooth first, J (who has his 7th or 8th wiggly tooth, I am not sure which he has lost quite a few) or Em! My money is on Em as she wiggles her's constantly, and J doesn't wiggle his and it has been wiggly for about 6 months already!
Monday, June 27, 2011
Neglected!
Since I have been busy with the 31 days of May the CF way - which kept me busy through most of June too! I have missed two important times on my blog! The first being its first birthday! So happy first birthday blog! Time certainly flies, Its hard to believe I have been writing on here for a whole year.
The other important thing was 100 posts! I find it hard to believe that I have that much to say. Here's to another year and another 100 posts!
The other important thing was 100 posts! I find it hard to believe that I have that much to say. Here's to another year and another 100 posts!
Friday, June 24, 2011
31 Days of May the CF Way - Day 31 Thank you
Thanks to everyone who has been reading these posts for 1 whole month (well actually 2- cause its taken me that long!!!)
I hope that your understanding of CF has increased.
Thanks to the other CF Mum's who started this off in the first place.
All my love
I hope that your understanding of CF has increased.
Thanks to the other CF Mum's who started this off in the first place.
All my love
Thursday, June 23, 2011
31 Days of May the CF Way - Day 30
In 1989 scientists discovered the CF gene on chromosome #7. This was a huge milestone in the fight to find a cure. WHat are YOU going to do to raise awareness for CF? With your help we could make CF stand for Cure Found.
I am organising a tupperware party for next month, 10% of all sales will be donated to Cystic Fibrosis Queensland.
We are also going to be doing the Great Strides Walkathon on the 16th of October. Last year Team El raised over $600. Keep the day free and join in the walk.
I am organising a tupperware party for next month, 10% of all sales will be donated to Cystic Fibrosis Queensland.
We are also going to be doing the Great Strides Walkathon on the 16th of October. Last year Team El raised over $600. Keep the day free and join in the walk.
Sunday, June 19, 2011
31 Days of May the CF Way - Day 29 In Q and A part 2
1.Do the different types (Gene types) of CF affect the individuals in different ways or are they basically the same?
To start with you have to have two of the faulty genes to have CF. These can be the same faulty gene or a combination of two different faulty genes. My understanding is that depending on the type of gene they can pretty much guarantee if the digestive system will be involved or not. With some gene types, there is not need for digestive enzymes to be taken.
However, I think that all people with CF, have lung issues, and this tends to be very individual, not determined by the genes involved. I'm not sure if I've explained that very well? Let me know if it doesn't make sense, and I'll try explaining again!
2.
One of my Mum's work colleagues had CF, then had a lung transplant, and she said it completely opened up his life - he started running marathons and the like. I know that CF lungs are really mucousy, which is why you have to do so much physio - but aren't there digestive issues as well, hence the enzymes? So someone who had CF then had a lung transplant would have to take anti-rejection drugs for the rest of their life, but would still have to monitor diet and have enzymes, is that right?
From my understanding that is correct! I believe that their energy requirements are less. I also read recently that other symptoms like finger clubbing disappear, too.
3. How do you feel about transplants? (I don't ask that flippantly, I know it's a really big issue to some people).
I have mixed feeling about transplant. I am quite happy to donate my organs after I die. But if i had to decide for El to accept a transplant I'm not sure I would, but I think Rob would! How's that for a dilemma? I hope that she will be old enough to make a decision for herself when the time comes, and pray that i will be able to support her in that decision.
4. I appreciate that you're trying to make your family as normal as possible - what can we do to support you?
Prayers help, and keeping the older kids for appointments also helps and just listening when I babble!
I hope that answers everybody's questions ok!
To start with you have to have two of the faulty genes to have CF. These can be the same faulty gene or a combination of two different faulty genes. My understanding is that depending on the type of gene they can pretty much guarantee if the digestive system will be involved or not. With some gene types, there is not need for digestive enzymes to be taken.
However, I think that all people with CF, have lung issues, and this tends to be very individual, not determined by the genes involved. I'm not sure if I've explained that very well? Let me know if it doesn't make sense, and I'll try explaining again!
2.
One of my Mum's work colleagues had CF, then had a lung transplant, and she said it completely opened up his life - he started running marathons and the like. I know that CF lungs are really mucousy, which is why you have to do so much physio - but aren't there digestive issues as well, hence the enzymes? So someone who had CF then had a lung transplant would have to take anti-rejection drugs for the rest of their life, but would still have to monitor diet and have enzymes, is that right?
From my understanding that is correct! I believe that their energy requirements are less. I also read recently that other symptoms like finger clubbing disappear, too.
3. How do you feel about transplants? (I don't ask that flippantly, I know it's a really big issue to some people).
I have mixed feeling about transplant. I am quite happy to donate my organs after I die. But if i had to decide for El to accept a transplant I'm not sure I would, but I think Rob would! How's that for a dilemma? I hope that she will be old enough to make a decision for herself when the time comes, and pray that i will be able to support her in that decision.
4. I appreciate that you're trying to make your family as normal as possible - what can we do to support you?
Prayers help, and keeping the older kids for appointments also helps and just listening when I babble!
I hope that answers everybody's questions ok!
Saturday, June 18, 2011
31 Days of May the CF Way - Day 28 In Q and A part 1
1.What is the course of life for a typical CF person, if there be such a thing?
The sticky mucus in cf lungs is a breeding ground for bacteria, which causes infection, which causes irreversible scarring. The scarring becomes worse and worse and eventually the lungs don't work well enough to support life. So, I guess there is a gradual decrease in lung function. How quickly this happens varies from person to person, even with siblings.
2.You mentioned that there's a particularly nasty bacteria that usually makes an appearance, and current life expectancy is somewhere around 30 - are there any/many restrictions within their lives (eg can't work the lungs too hard with intense sport), apart from carefully monitoring their diet/enzymes, taking loads of pills, and more frequent hospital admissions?
The particularly nasty bacteria is pseudomonas. Which seems to damage the lungs quite significantly. I don't believe that there are many restrictions, until their lungs function becomes lower and they require oxygen.
3.Are certain sports recommended for children with CF?
Recently I was speaking with a nurse who had been working with children with CF for twenty years what the biggest difference is now to when she started. She said the drugs that were being/had been developed, but also the exercise that was being encouraged now that hadn't been in the past. We have been specifically encourage to get El swimming (which we did over summer) and jumping on the trampoline (we have a mini tramp), but anything that gets their heart pumping and their lungs working to move that sticy gunk is fantastic.
4.What is the average life expectancy for someone with CF?
Life expectancy in Australia for people with CF is now 35 years. I'm not really sure if this is an average figure or not, but I believe the average is around mid 30's.
Well, that's it for this post. If you have any more questions or I haven't answered these questions well enough, let me know so that I can put it in my next post.
The sticky mucus in cf lungs is a breeding ground for bacteria, which causes infection, which causes irreversible scarring. The scarring becomes worse and worse and eventually the lungs don't work well enough to support life. So, I guess there is a gradual decrease in lung function. How quickly this happens varies from person to person, even with siblings.
2.You mentioned that there's a particularly nasty bacteria that usually makes an appearance, and current life expectancy is somewhere around 30 - are there any/many restrictions within their lives (eg can't work the lungs too hard with intense sport), apart from carefully monitoring their diet/enzymes, taking loads of pills, and more frequent hospital admissions?
The particularly nasty bacteria is pseudomonas. Which seems to damage the lungs quite significantly. I don't believe that there are many restrictions, until their lungs function becomes lower and they require oxygen.
3.Are certain sports recommended for children with CF?
Recently I was speaking with a nurse who had been working with children with CF for twenty years what the biggest difference is now to when she started. She said the drugs that were being/had been developed, but also the exercise that was being encouraged now that hadn't been in the past. We have been specifically encourage to get El swimming (which we did over summer) and jumping on the trampoline (we have a mini tramp), but anything that gets their heart pumping and their lungs working to move that sticy gunk is fantastic.
4.What is the average life expectancy for someone with CF?
Life expectancy in Australia for people with CF is now 35 years. I'm not really sure if this is an average figure or not, but I believe the average is around mid 30's.
Well, that's it for this post. If you have any more questions or I haven't answered these questions well enough, let me know so that I can put it in my next post.
Friday, June 17, 2011
31 Days of May the CF Way - Day 27 In Memory
In Memory of
Conner Reed Jones April 14, 2003 to June 24, 2010.
Jessica Wales Jessica died on 12 January, 2010, aged 20.
Eva Markvoort March 31, 1984 – March 27, 2010.
Alicai R 12/12/2000 - 17/5/2011
“One person every day still dies from cystic fibrosis."
Margarete Cassalina of Milton, N.Y.,
Conner Reed Jones April 14, 2003 to June 24, 2010.
Jessica Wales Jessica died on 12 January, 2010, aged 20.
Eva Markvoort March 31, 1984 – March 27, 2010.
Alicai R 12/12/2000 - 17/5/2011
“One person every day still dies from cystic fibrosis."
Margarete Cassalina of Milton, N.Y.,
Thursday, June 9, 2011
31 Days of May the CF Way - Day 26 A Legacy Like No Other
It was amazing that yesterday when I was reading the topic for this post I couldn't decide which amazing CF warrior to write this post about and then I read a blog which I have been following for quite a while and what she wrote truly fit into the topic. This mother lost her young boy to CF almost a year ago. If you would like to read the whole post it is at http://notsobrightandshiny.blogspot.com/
But this is the part that is most relevant.
"I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about. leaving a legacy."
Conner Reed Jones April 14, 2003- June 24, 2010.
If you want to read about other amazing people with CF look up the following: Eva Markvoort,and Burke P. Bear ( I would like to get one of these for El when she is older).
Please get Questions in, if you have them as its day 29 for questions.
But this is the part that is most relevant.
"I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about. leaving a legacy."
Conner Reed Jones April 14, 2003- June 24, 2010.
If you want to read about other amazing people with CF look up the following: Eva Markvoort,and Burke P. Bear ( I would like to get one of these for El when she is older).
Please get Questions in, if you have them as its day 29 for questions.
Friday, June 3, 2011
31 Days of May the CF Way - Day 25 My Biggest Fear
I think my biggest fear in regards to CF, is having to watch my child suffer. Not just the numerous needles and medicines, but potentially watching her lungs fail her, watching her struggle to breathe. I hope it never comes to that, but the odds are not very good. It is something I try not to think about. But when I do it makes me feel ill. That is my biggest fear.
Sorry for the depressing post, but that is the truth. Please don't forget to send me any questions for my day 30 post.
Sorry for the depressing post, but that is the truth. Please don't forget to send me any questions for my day 30 post.
31 Days of May the CF Way - Day 24 My Saviour
I know its June, but I had an inspection and had to spend my spare time cleaning! So I am starting to catch up.
Jesus is my saviour! A really short one, easy to write. I thought I'd include a Bible verse that has been my favourite for a while.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Jesus is my saviour! A really short one, easy to write. I thought I'd include a Bible verse that has been my favourite for a while.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Sunday, May 29, 2011
31 Days of May the CF Way - Day 23 Hygiene
Hygiene is quite important, all the time for any of us, but I am a little more careful since we have someone with CF in our home. We try to limit El's exposure to the bugs that could cause damage to her lungs. Which is quite difficult as they live everywhere!
We do not visit or have playdates with anyone who has a cold (or whose family member has a cold), or let them visit us!
If anyone in our house has a cold they stay away from B, quite difficult really (Especially when its me!). Tissues are meant to be thrown away and hands washed after coughing and sneezing. All really basic hygiene, just more emphasis on it in our home!
When we are out, I always carry hand sanitizer which we use before eating/drinking and when leaving places (like the library or shops).
When we are in hospital for a clinic visit or admission I turn into monster Mum! We do not play with toys in the waiting area, or playgrounds. We wash our hands when we get to our room and every visitor is told to wash their hands before entering! I also don't really go near the other patients in our room, keeping our curtains closed as much as the nurses will let us! Its a good thing too, as a fellow patient was changed to infectious, after sneezing, coughing and whatever for three days before his culture came back (Ewwww!).
So please don't visit us, when you are germy and when you do visit us, wash your hands!!
We do not visit or have playdates with anyone who has a cold (or whose family member has a cold), or let them visit us!
If anyone in our house has a cold they stay away from B, quite difficult really (Especially when its me!). Tissues are meant to be thrown away and hands washed after coughing and sneezing. All really basic hygiene, just more emphasis on it in our home!
When we are out, I always carry hand sanitizer which we use before eating/drinking and when leaving places (like the library or shops).
When we are in hospital for a clinic visit or admission I turn into monster Mum! We do not play with toys in the waiting area, or playgrounds. We wash our hands when we get to our room and every visitor is told to wash their hands before entering! I also don't really go near the other patients in our room, keeping our curtains closed as much as the nurses will let us! Its a good thing too, as a fellow patient was changed to infectious, after sneezing, coughing and whatever for three days before his culture came back (Ewwww!).
So please don't visit us, when you are germy and when you do visit us, wash your hands!!
Friday, May 27, 2011
31 Days of May the CF Way - Day 27 My Wish For CF!
OK so I skipped a few days but my plan is to catch up another day!!
Today is 65 Roses day, which I have explained in a previous post. I meant to write about a wish I have for CF and I'm not sure what to write. That I wish I will wake up fand find this has just been a nightmare? So I guess what a lot of us wish for is a cure, make cf stand for cure found not cystic fibrosis. And there has been some great progress in drug studies this year (for genotypes that are not the same as El!)
But my biggest wish is that Cystic Fibrosis will make us stronger as a family and not tear us apart. I know the journey will not be easy, but with lots of prayers I am sure we will get through this.
Oh and for good measure check out this short video!
http://www.youtube.com/watch?v=ng_Cfub6VhM
And for my last post of the month I would like to do a question and answer blog so please send me an email with some questions or it won't work!!
Today is 65 Roses day, which I have explained in a previous post. I meant to write about a wish I have for CF and I'm not sure what to write. That I wish I will wake up fand find this has just been a nightmare? So I guess what a lot of us wish for is a cure, make cf stand for cure found not cystic fibrosis. And there has been some great progress in drug studies this year (for genotypes that are not the same as El!)
But my biggest wish is that Cystic Fibrosis will make us stronger as a family and not tear us apart. I know the journey will not be easy, but with lots of prayers I am sure we will get through this.
Oh and for good measure check out this short video!
http://www.youtube.com/watch?v=ng_Cfub6VhM
And for my last post of the month I would like to do a question and answer blog so please send me an email with some questions or it won't work!!
Wednesday, May 25, 2011
31 Days of May the CF Way - Day 22 A Day in The Life of El
El is a typical 2 year old, and we want her to enjoy her life and not be controlled by CF. So I guess CF is just a part of who she is. I remember at uni they were very strict about using politically correct language. For instance, you couldn't write, 'the autistic child', in assignments you had to write, 'the child with autism'. We used to grumble about it, what difference does it really make? It wasn't until I had El that I realised it is very different.
So here is a day in the life of El, a two year old who just happens to have CF:
6am wake up- straight into physio, pats and PEP
6.45 am - antibiotics 4.5mls, Iron 1ml (every 2nd day), 2 enzymes and a nutrini drink
Plays with brother and sister.
Plate of fruit
9am - breakfast (porridge with cream, milk, honey and golden syrup) 1 or 2 enzymes, vitamin tablet.
normal morning stuff (get dressed, brush teeth etc, play)
10-12 plays or does "school work with the big kids"
12 lunch usually 2 enzymes
sleep time
3pm nutrini drink 2 enazymes, afternoon tea (more enzymes)
we usually go out in the afternoons (shops, sports, park, etc)
5pm dinner (more enzymes, and antibiotics)
bath with Em
story and bed (if well)
or
Physio Pats and PEP
bed (if unwell)
You can see she is a normal child, with physio and lots of tablets to take!!
So here is a day in the life of El, a two year old who just happens to have CF:
6am wake up- straight into physio, pats and PEP
6.45 am - antibiotics 4.5mls, Iron 1ml (every 2nd day), 2 enzymes and a nutrini drink
Plays with brother and sister.
Plate of fruit
9am - breakfast (porridge with cream, milk, honey and golden syrup) 1 or 2 enzymes, vitamin tablet.
normal morning stuff (get dressed, brush teeth etc, play)
10-12 plays or does "school work with the big kids"
12 lunch usually 2 enzymes
sleep time
3pm nutrini drink 2 enazymes, afternoon tea (more enzymes)
we usually go out in the afternoons (shops, sports, park, etc)
5pm dinner (more enzymes, and antibiotics)
bath with Em
story and bed (if well)
or
Physio Pats and PEP
bed (if unwell)
You can see she is a normal child, with physio and lots of tablets to take!!
31 Days of May the CF Way - Day 21 Social Awkwardness
This relates to silly comments other people have made about your child.
The first occasion that springs is when we met an elderly friend of a friend of mine, who had been told that El had cystic fibrosis. She said, "she looks alright for someone who will probably never walk." Um what??? I think she must have mistaken cystic fibrosis for something else! EL was only a few months old and I was completely shocked and probably didn't handle the situation very well! She certainly left with a lot more knowledge of CF then she arrived with!!
Another occasion was quite recently when we were with a group of friends and an 7 year old told El "go away, I don't want to catch your disease!" At the time I didn't know whether to laugh or cry! I did ask the child to clarify what she meant, and the child said, "She didn't want to go to hospital like El." I explained that you couldn't catch her "disease" and that it was called CF for short. The child was then perfectly happy to be around El!
It is hard for people to understand CF, because often times the child looks so well. Even I look at her sometimes and go, how can there be so much wrong? I do try to understand the things that people say from their perspective and hope that I am not too prickly when people say inappropriate things!
The first occasion that springs is when we met an elderly friend of a friend of mine, who had been told that El had cystic fibrosis. She said, "she looks alright for someone who will probably never walk." Um what??? I think she must have mistaken cystic fibrosis for something else! EL was only a few months old and I was completely shocked and probably didn't handle the situation very well! She certainly left with a lot more knowledge of CF then she arrived with!!
Another occasion was quite recently when we were with a group of friends and an 7 year old told El "go away, I don't want to catch your disease!" At the time I didn't know whether to laugh or cry! I did ask the child to clarify what she meant, and the child said, "She didn't want to go to hospital like El." I explained that you couldn't catch her "disease" and that it was called CF for short. The child was then perfectly happy to be around El!
It is hard for people to understand CF, because often times the child looks so well. Even I look at her sometimes and go, how can there be so much wrong? I do try to understand the things that people say from their perspective and hope that I am not too prickly when people say inappropriate things!
Tuesday, May 24, 2011
31 Days of May the CF Way - Day 20 Smoking
Smoking. Well, I think we all know its bad for us, and I guess that you can figure out what that cigarette smoke would do to the thick sticky gunk in El's lungs. So no lectures from me!
Yesterday I was listening to the radio(116am) and they had a call from someone trying to start a smoker's political party! He wanted to bring back smoking in certain areas of planes, trains and restaraunts! I couldn't believe it!! I think that would be very bad for everyone, especailly El! I am glad we have laws restricting places people can smoke because that I can avoid places where there is smoke, and protect El's lungs.
Yesterday I was listening to the radio(116am) and they had a call from someone trying to start a smoker's political party! He wanted to bring back smoking in certain areas of planes, trains and restaraunts! I couldn't believe it!! I think that would be very bad for everyone, especailly El! I am glad we have laws restricting places people can smoke because that I can avoid places where there is smoke, and protect El's lungs.
31 Days of May the CF Way - Day 19 Siblings
I have said before that when a child has a life threatening disease, the whole family has a life threatening disease! CF affects all of our lives in many ways.
In the mornings, El can not eat before her physio, so I don't let the other two eat either. This can make for some rather grumpy starts to the day, and even though I usually get her physio done first thing it does take about 40 minutes!
When El has appointments, the other two get looked after by friends or family, which is fine for now as they love it, but I wonder if they will always like it? They also go to Grandma's when EL has admissions.
Perhaps the biggest thing at the moment is Em questioning why El has physio, enzymes, and medicines. I try my best to answer her questions. This morning the question was, why does El need enzymes. I explained it by saying that CF makes El's body work differently to ours and that enzymes help her digest her food properly. I don't know how much made sense to her though.
I worry about the day they find out how serious CF actually is. I think they have a general idea, but not the full idea. I have always talked openly of death to them, like when their fish died, but I am not sure that anyone can prepare for the death of a loved one.
My biggest worry as they grow is that they might resent that El has CF. But that is what our life is and I hope they will make the most of it.
In the mornings, El can not eat before her physio, so I don't let the other two eat either. This can make for some rather grumpy starts to the day, and even though I usually get her physio done first thing it does take about 40 minutes!
When El has appointments, the other two get looked after by friends or family, which is fine for now as they love it, but I wonder if they will always like it? They also go to Grandma's when EL has admissions.
Perhaps the biggest thing at the moment is Em questioning why El has physio, enzymes, and medicines. I try my best to answer her questions. This morning the question was, why does El need enzymes. I explained it by saying that CF makes El's body work differently to ours and that enzymes help her digest her food properly. I don't know how much made sense to her though.
I worry about the day they find out how serious CF actually is. I think they have a general idea, but not the full idea. I have always talked openly of death to them, like when their fish died, but I am not sure that anyone can prepare for the death of a loved one.
My biggest worry as they grow is that they might resent that El has CF. But that is what our life is and I hope they will make the most of it.
Friday, May 20, 2011
31 Days of May the CF Way - Day 18 The first day I heard that big word (or those big words)!
47% of people born with Cystic Fibrosis aren't expected to live past 18. I have always focused on the fact that the average life expectency of people with CF is mid-thirties, but hearing the other side that my little baby only has about a 50% change of living as an adult really stopped me in my tracks!
changes in the lung (Bronchiectasis) occur in children with CF, as young as five, even if they have no significant history of infections!
pseudomonas- one of the dreaded CF bugs
Cystic Fibrosis Related Diabetes - a diabetes specific to CF that is very common in the older (20's) CF population
Your Child Has a Life Threatening Condition- quite self explanatory really
Pancreatic Enzyme Replacement Therapy(CREON) , ABDEK, Ferrous Sulphate, Timentin, Tobramyacin, Flucloxacillin, and various other drugs that you wish you'd never heard of!!
There are lots of other words that we've heard over the last two years that we wish we had never heard, Cystic Fibrosis for a start. But I picked the ones that really freak me out!!
changes in the lung (Bronchiectasis) occur in children with CF, as young as five, even if they have no significant history of infections!
pseudomonas- one of the dreaded CF bugs
Cystic Fibrosis Related Diabetes - a diabetes specific to CF that is very common in the older (20's) CF population
Your Child Has a Life Threatening Condition- quite self explanatory really
Pancreatic Enzyme Replacement Therapy(CREON) , ABDEK, Ferrous Sulphate, Timentin, Tobramyacin, Flucloxacillin, and various other drugs that you wish you'd never heard of!!
There are lots of other words that we've heard over the last two years that we wish we had never heard, Cystic Fibrosis for a start. But I picked the ones that really freak me out!!
Wednesday, May 18, 2011
31 Days of May the CF Way - Day 17 Hospital admissions what happens
A typical dayof an admission for El.
6am wake up! Hertimentin is given through the iv.
7am the line is flushed and removed, we usually sneak a shower in!
Breakfast arrives! 2 weet bix with milk, cream and salt!
8-10 am physio usually comes
10.30 am morning tea arrives, crisps and breaka
The doctor usually comes around this time.
Other visitors like the dietician and OT or social worker come at this time too.
12.00 hooked back up for tobra iv
lunch comes usually something hot with vegies, yoghurt (the non cf kids get sandwiches!)
1pm iv changed to timentin
she usually has a sleep (and Mummy too)
2-4pm afternoon tea comes (cake or biscuits and soft drink)
physio usually comes again
tobra levels checked (finger or toe prick and squeeze) on days it needs to be checked
5pm dinner comes (similar to lunch, with dessert which is custard or ice cream)
6pm timentin iv
7pm supper arrives (special milk drink and biscuits)
8pm usually asleep (mum gets to watch tv!)
12midnight timentin iv
Our biggest problem over the first 4 days was her cannulas which kept coming out, or getting occluded. So every day she had to have a new one put in. Which meant more nasty needles, and I really don't think the magic cream helps. Although I could be wrong! That is a typical day in the hospital! Multiply that by 14 and you have an admission, (except we escaped on day 7 to do Hospital In The Home!)
6am wake up! Hertimentin is given through the iv.
7am the line is flushed and removed, we usually sneak a shower in!
Breakfast arrives! 2 weet bix with milk, cream and salt!
8-10 am physio usually comes
10.30 am morning tea arrives, crisps and breaka
The doctor usually comes around this time.
Other visitors like the dietician and OT or social worker come at this time too.
12.00 hooked back up for tobra iv
lunch comes usually something hot with vegies, yoghurt (the non cf kids get sandwiches!)
1pm iv changed to timentin
she usually has a sleep (and Mummy too)
2-4pm afternoon tea comes (cake or biscuits and soft drink)
physio usually comes again
tobra levels checked (finger or toe prick and squeeze) on days it needs to be checked
5pm dinner comes (similar to lunch, with dessert which is custard or ice cream)
6pm timentin iv
7pm supper arrives (special milk drink and biscuits)
8pm usually asleep (mum gets to watch tv!)
12midnight timentin iv
Our biggest problem over the first 4 days was her cannulas which kept coming out, or getting occluded. So every day she had to have a new one put in. Which meant more nasty needles, and I really don't think the magic cream helps. Although I could be wrong! That is a typical day in the hospital! Multiply that by 14 and you have an admission, (except we escaped on day 7 to do Hospital In The Home!)
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