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!!
Sunday, May 29, 2011
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!)
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!)
Monday, May 16, 2011
31 Days of May the CF Way - Day 16 Hospital Mistakes
Thankfully, we have not been part of any major hospital mistakes in our journey so far! But two minor things have happened that have been a little scary!
The first was during El's admission earlier this year. The night before her GA for her PICC line the anaesthetist came to see us and we went through all the paperwork, signed her life away, and just before she left she said, No food after 6 am and no water after 10am.
The next morning at 5.45am I buzzed the nurse and asked for an early breakfast. Oh no, says the nurse, she doesn't have to fast till 8. She checked her paperwork which said 8am. I said no the anaesthetist said six. Anyway, even though she didn't agree with me I insisted that El have her early breakfast.
At about 12.30pm the nurse in charge comes in, clearly agitated and says, we have given her food too late, she won't be able to have surgery. I said, she has had nothing since six. She said, but the paperwork was wrong. I said I know but I did what the anaesthetist said to do. No food after 6am.
Thankfully, I didn't listen to the nurses and stood my ground on that one and El was able to have her surgery that day!!
The other instance was just recently at clinic. An OT came in to see us, a new one again! She starts with, we understand that the OT you usually see is concerned with El's speech and has spoken to you about it. I said No, I haven't heard anything, and I have no concerns. Oh, sorry I must be getting you mixed up with someone else. She went and checked and yep she had the wrong patient!!
Thankfully,my stories have only been minor mistakes.
Some stories I have heard from other CF Mum's are truly scary!
The first was during El's admission earlier this year. The night before her GA for her PICC line the anaesthetist came to see us and we went through all the paperwork, signed her life away, and just before she left she said, No food after 6 am and no water after 10am.
The next morning at 5.45am I buzzed the nurse and asked for an early breakfast. Oh no, says the nurse, she doesn't have to fast till 8. She checked her paperwork which said 8am. I said no the anaesthetist said six. Anyway, even though she didn't agree with me I insisted that El have her early breakfast.
At about 12.30pm the nurse in charge comes in, clearly agitated and says, we have given her food too late, she won't be able to have surgery. I said, she has had nothing since six. She said, but the paperwork was wrong. I said I know but I did what the anaesthetist said to do. No food after 6am.
Thankfully, I didn't listen to the nurses and stood my ground on that one and El was able to have her surgery that day!!
The other instance was just recently at clinic. An OT came in to see us, a new one again! She starts with, we understand that the OT you usually see is concerned with El's speech and has spoken to you about it. I said No, I haven't heard anything, and I have no concerns. Oh, sorry I must be getting you mixed up with someone else. She went and checked and yep she had the wrong patient!!
Thankfully,my stories have only been minor mistakes.
Some stories I have heard from other CF Mum's are truly scary!
Sunday, May 15, 2011
31 Days of May the CF Way - Day 15 Fatigue Silly Stuff You Did When Tiredb
The silly stuff I do! The list could be endless! Actually now that I've thought about it I probably shouldn't admit to some of the things I was was thinking of writing. So here is the short version!
On numerous occasions I have added salt to the wrong child's drink! They quickly let me know about that one!
I have fallen asleep doing El's PEP mask! Its the rest between each one that get me.
I also do normal tired busy Mummy stuff. Like call the wrong child. Put Em's clothes on El or worse put El's clothes on Em! Put the wrong milk on each cereal, the list is endless.
I love it when J says, Mum you make lots of mistakes, but we love you anyway!! (i wonder where they have heard that before???)
On numerous occasions I have added salt to the wrong child's drink! They quickly let me know about that one!
I have fallen asleep doing El's PEP mask! Its the rest between each one that get me.
I also do normal tired busy Mummy stuff. Like call the wrong child. Put Em's clothes on El or worse put El's clothes on Em! Put the wrong milk on each cereal, the list is endless.
I love it when J says, Mum you make lots of mistakes, but we love you anyway!! (i wonder where they have heard that before???)
31 Days of May the CF Way - Day 14 Out of the mouths of babes
Two stories for this one. The first is one that I have stolen and is common in the CF community. I have heard quite a few different versions of the story, each of them special.
65 Roses
The phrase "65 roses" is simply another way of saying cystic fibrosis. It came into being in 1965 when a young boy with cystic fibrosis overheard his mother talking about the disease on the phone. When she said the words “cystic fibrosis”, he thought she said “65 roses”. The mother was touched by her son’s mistake because he saw something beautiful in a disease that can often be quite ugly.
taken from
http://cysticfibrosis.about.com/od/cysticfibrosis101/f/65roses.htm
The second story is one from our own lives.
We were out at a playground, and I was chatting to other mothers, Em was listening to our conversation, we were talking about discipline I can't remember the exact conversation but smacking definately was part of it. Em's comment was. " It's ok, because Mum says we HAVE to bash EL up." Yes, there were a few dirty looks and I didn't particularly feel like explaining that we called physio bashing up sometimes, or even that we did physio and why!! Needless to say we left soon after. I must say I don't call physio, bashing up time so much anymore!
65 Roses
The phrase "65 roses" is simply another way of saying cystic fibrosis. It came into being in 1965 when a young boy with cystic fibrosis overheard his mother talking about the disease on the phone. When she said the words “cystic fibrosis”, he thought she said “65 roses”. The mother was touched by her son’s mistake because he saw something beautiful in a disease that can often be quite ugly.
taken from
http://cysticfibrosis.about.com/od/cysticfibrosis101/f/65roses.htm
The second story is one from our own lives.
We were out at a playground, and I was chatting to other mothers, Em was listening to our conversation, we were talking about discipline I can't remember the exact conversation but smacking definately was part of it. Em's comment was. " It's ok, because Mum says we HAVE to bash EL up." Yes, there were a few dirty looks and I didn't particularly feel like explaining that we called physio bashing up sometimes, or even that we did physio and why!! Needless to say we left soon after. I must say I don't call physio, bashing up time so much anymore!
31 Days of May the CF Way - Day 13 $ Signs
As I've said before we are extremely blessed in Australia to have the PBS. El also has a health care card which gives us further discounts off medicines.
Every prescription costs about $6, and there are quite a few over the course of a month. Another CF Mum has two children with CF and counted 37 prescription medicines that her children need!
So far all of EL's equipment for physio has been donated to us by Cystic Fibrosis Queensland. However, sometime in the future El will need a nebuliser at a cost of about $1500 and parts to go along with it!
Parking, each time we go to the hospital it costs about $20 to park, which is not too bad once every six weeks but sometimes we have had two or even three visits in a week. Some of these visits are Em's for cleft related appointments.
Admissions. No matter how you work it admissions seem to be expensive. I'm not really sure why, but we spend more money when we are inside.
Unfortunately as CF is a progressive disease the cost we will incur will probably rise in the future as she requires more medicine, more nebulisers and more hospital admissions. However, I would say that the biggest cost is not measured in dollars but in the effect that this disease has on our daily lives. Not just El but J and Em and A and I, and our extended family.
Every prescription costs about $6, and there are quite a few over the course of a month. Another CF Mum has two children with CF and counted 37 prescription medicines that her children need!
So far all of EL's equipment for physio has been donated to us by Cystic Fibrosis Queensland. However, sometime in the future El will need a nebuliser at a cost of about $1500 and parts to go along with it!
Parking, each time we go to the hospital it costs about $20 to park, which is not too bad once every six weeks but sometimes we have had two or even three visits in a week. Some of these visits are Em's for cleft related appointments.
Admissions. No matter how you work it admissions seem to be expensive. I'm not really sure why, but we spend more money when we are inside.
Unfortunately as CF is a progressive disease the cost we will incur will probably rise in the future as she requires more medicine, more nebulisers and more hospital admissions. However, I would say that the biggest cost is not measured in dollars but in the effect that this disease has on our daily lives. Not just El but J and Em and A and I, and our extended family.
Thursday, May 12, 2011
31 days of May the CF way Cracking Point: the day I really cracked
Apart from when I initially found out about El having CF (and I really cracked that day). I think the most crazy i have gotten is the days we have been released from hospital. I think that holding it all together while we are inside really takes a toll on me. I remember after El's first admission A was driving us home and he put on one of the songs I like and it made me cry!! Poor A didn't know what to think.
I also tend to get a little angry at smokers! Which is totally unfair of me. I remember one smoker in particular was smoking near a mcdonalds playground and I was ranting and raving like a complete lunatic, from the safety of my car with the windows up so he couldn't hear! It was completly irrational on my part! J and Em were a little freaked out by my behaviour. I usually do not go on like that. I am usually a quiet, internally angry sort of person!
I also tend to get a little angry at smokers! Which is totally unfair of me. I remember one smoker in particular was smoking near a mcdonalds playground and I was ranting and raving like a complete lunatic, from the safety of my car with the windows up so he couldn't hear! It was completly irrational on my part! J and Em were a little freaked out by my behaviour. I usually do not go on like that. I am usually a quiet, internally angry sort of person!
31 Days of May the CF Way - Day 11 P words
Pseudomonas Aeruginosa is a common bacterium that can cause disease.It is found in water, soil, skin flora and most man made environments in the world. ( I took this information from Wikipedia)
This bug causes a lot of damage in CF lungs. Once it is there it is really hard to get rid of. Thankfully El has not had this bug yet. Although we have been warned about it since we first found out that El has CF. I dread the day when we hear El has cultured Pseudomonas.
Physiotherapy
Part ofEl's daily regime is twice a day physio or airway clearance. This takes about 30-40 minutes each time. This is to combat the build up of thick sticky mucus on the lungs, which helps to reduce infection and prevent lung damage.
Positive Expiration Pressure (PEP)
THis involves using a special mask which El breathes into. IT opens up the small airways allowing mucus to be moved out of the lungs. This is a big part of B's physiotherapy.
PICC line
Peripherally inserted central Catheter. A form of intravenous access. El had her first PICC line this year. It was put in under a general anaethetic. It was inserted, near her elbow and went through a vein up her arm towards her chest. It was removed when she was awake.
Poop
CF affects the pancreas and makes it difficult for people with CF to absorb food. This causes lots of large, smelly, greasy stools. And when I say smelly I mean smelly!!! El'senzymes (Creon) are given to help her digest her food properly and reduce these symptoms.
PEG
Percutaneous (through the skin) Endoscopic Gastrotomy (stomach tube). This is used to give supplementary feeds to CF'ers who can't maintain their weight. Not something we need just yet.
Port
(portacath) A small deviced placed beneath the skin, providing more permanent iv access. Usually given to CF patients who require frequent iv treatment.
Information taken from wikipedia and Cystic fibrosis australia websites
This bug causes a lot of damage in CF lungs. Once it is there it is really hard to get rid of. Thankfully El has not had this bug yet. Although we have been warned about it since we first found out that El has CF. I dread the day when we hear El has cultured Pseudomonas.
Physiotherapy
Part ofEl's daily regime is twice a day physio or airway clearance. This takes about 30-40 minutes each time. This is to combat the build up of thick sticky mucus on the lungs, which helps to reduce infection and prevent lung damage.
Positive Expiration Pressure (PEP)
THis involves using a special mask which El breathes into. IT opens up the small airways allowing mucus to be moved out of the lungs. This is a big part of B's physiotherapy.
PICC line
Peripherally inserted central Catheter. A form of intravenous access. El had her first PICC line this year. It was put in under a general anaethetic. It was inserted, near her elbow and went through a vein up her arm towards her chest. It was removed when she was awake.
Poop
CF affects the pancreas and makes it difficult for people with CF to absorb food. This causes lots of large, smelly, greasy stools. And when I say smelly I mean smelly!!! El'senzymes (Creon) are given to help her digest her food properly and reduce these symptoms.
PEG
Percutaneous (through the skin) Endoscopic Gastrotomy (stomach tube). This is used to give supplementary feeds to CF'ers who can't maintain their weight. Not something we need just yet.
Port
(portacath) A small deviced placed beneath the skin, providing more permanent iv access. Usually given to CF patients who require frequent iv treatment.
Information taken from wikipedia and Cystic fibrosis australia websites
Wednesday, May 11, 2011
31 Days of May the CF Way - Day 10 Pros and Cons
A would say I was a negative person ( I prefer realistic) , but for once I am going to focus more on the positives!
Cons
CF Sucks! Nothing more to say really.
Pros
Living in Australia we are at a distinct advantage to people in other countries who have CF. The PBS makes our life easier and less expensive compared with other countries.
I hope that my children will have more compassion for people who are different.
The people we have met in the hospital, at CF events and in daily life
The internet- I often wonder how mothers coped before the internet. (Our children can never meet due to the risk of cross infection). The internet is a fantastic tool for us to connect.
Good friends - All of those who are just there when I need them, who watch the other kids when we have appointments or emergency visits to the hospital. Those who listen when i go on about CF things. And those who don't ask too many questions! Love you all! You make our journey easier!
Family who put their lives on hold for us, do washing when we are in hospital, keep the big kids, etc, etc, etc....
Learning what really matters in life!! Not worrying about the small stuff so much!
Cons
CF Sucks! Nothing more to say really.
Pros
Living in Australia we are at a distinct advantage to people in other countries who have CF. The PBS makes our life easier and less expensive compared with other countries.
I hope that my children will have more compassion for people who are different.
The people we have met in the hospital, at CF events and in daily life
The internet- I often wonder how mothers coped before the internet. (Our children can never meet due to the risk of cross infection). The internet is a fantastic tool for us to connect.
Good friends - All of those who are just there when I need them, who watch the other kids when we have appointments or emergency visits to the hospital. Those who listen when i go on about CF things. And those who don't ask too many questions! Love you all! You make our journey easier!
Family who put their lives on hold for us, do washing when we are in hospital, keep the big kids, etc, etc, etc....
Learning what really matters in life!! Not worrying about the small stuff so much!
Tuesday, May 10, 2011
31 Days of May the CF Way - Day 9 Greatest Milestone or Biggest Challengeb
31 Days of May the CF Way - Day 9 Greatest Milestone or Biggest Challenge
Greatest Milestone
I think that since finding out that my child has a life threatening condition, life has a different perspective. I tend to look at life as more of a gift. Thinking along those lines I see El's greatest milestones the same as any other child(walking, talking, birthdays, etc) , but perhaps we celebrate a little more and are more thankful to see her reach those milestones?
Biggest Challenge
I think that at the moment our biggest challenge is to get El's weight going up instead of down!( I keep telling her she can have some of my excess but I don't think she is listening.!)
Greatest Milestone
I think that since finding out that my child has a life threatening condition, life has a different perspective. I tend to look at life as more of a gift. Thinking along those lines I see El's greatest milestones the same as any other child(walking, talking, birthdays, etc) , but perhaps we celebrate a little more and are more thankful to see her reach those milestones?
Biggest Challenge
I think that at the moment our biggest challenge is to get El's weight going up instead of down!( I keep telling her she can have some of my excess but I don't think she is listening.!)
Sunday, May 8, 2011
31 Days of May the CF Way - Day 8 Non Compliance
El is on the whole a fairly good patient! However, we do have a few troubles! Occasionally El does not want to do her PEP physio, so we have to pin her down and shove the mask on her face! She is much better now then she used to be and only gets upset if she wants to be doing something else (like eating or wanting a toy!). It can be difficult because she can't eat for about an hour before physio as it tends to make her throw up.
A few months ago we had a very difficult time with her enzymes, she just refused to take them. At that time we were giving them once she had begun eating to see how much she would eat. We had to change our plan of attack. Now we give her enzymes first and she can not have food until she has taken them. Sometimes it takes a while (up to an hour) but she does take them!
At the moment she does not like the tast of her antibiotics so we have to pin her down and force feed her. Thankfully we have had experience with Em and have almost perfected the giving of oral medications to a non compliant child.
I hate having to force El to do things she doesn't want to and to take medicine that she doesn't like. Each day is a battle in some way or another and it is very tiring. However, it is a battle that has to be won. I think in some ways the age she is at (2) makes it fairly easy. I have grave fears that as she grows the battle we become harder rand longer. I know the day will come when she will be 100% responsible for herself. Thankfully I only have to get through one day at a time, one battle at a time!!!
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A few months ago we had a very difficult time with her enzymes, she just refused to take them. At that time we were giving them once she had begun eating to see how much she would eat. We had to change our plan of attack. Now we give her enzymes first and she can not have food until she has taken them. Sometimes it takes a while (up to an hour) but she does take them!
At the moment she does not like the tast of her antibiotics so we have to pin her down and force feed her. Thankfully we have had experience with Em and have almost perfected the giving of oral medications to a non compliant child.
I hate having to force El to do things she doesn't want to and to take medicine that she doesn't like. Each day is a battle in some way or another and it is very tiring. However, it is a battle that has to be won. I think in some ways the age she is at (2) makes it fairly easy. I have grave fears that as she grows the battle we become harder rand longer. I know the day will come when she will be 100% responsible for herself. Thankfully I only have to get through one day at a time, one battle at a time!!!
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31 Days of May the CF Way - Day 7 school
I really can't write anything about this topic as none of the kids have ever been in school or daycare so hopefully I will get permission to post one of my cf friend's day 7 so you can all read it!! I must say that homeschooling does allow us to be fairly flexible regarding appointments and treatments and even hospitalisation (thanks Mum for doing the older children's schoolwork when we are in hospital!)
Friday, May 6, 2011
31 days of may the cf way - day 6 clinic
Just thinking about clinic makes me nervous for days ahead (poor A cops a stressed out wife- warning A clinic is on monday)! I'm not sure why I get so stressed, I think perhaps it is all the people you have to see and all the questions they ask and the fact that CF is so unpredictable! So a typical clinic for us, means leaving home early. Generally I try to get somewone to keep J and Em, but this week they are coming along as we have to get to homeschool classes straight after!
Once we get there we see the receptionist and the questions begin. Then we wait in a waiting area and avoid sitting close to anyone else (due to the risk of cross infection people with cf are not meant to be closer then 1m apart). Then a nurse takes us to the scales and we weigh and measure El, which she usually screams for! Then we are taken to our own room, where we wait ...
...For the doctor, never the same one which drives me mad. The doctor asks lots of questions and listens to El's chest and pokes her tummy (both of which El screams through!). and then we wait...
...For the physio, who asks more question. And generally takes a cough swab (sticks a cotton bud kind of thing down Em's throat) (which she screams through -can't blame her for screaming for this one). And then we wait..
...for the dietician who checks her growth chart,asks what El eats in a typical day, and makes suggestions on what we could improve and then we wait....
... for the occupational therapist who asks lots of questions and offers support and ideas for giving/taking medications, and doing physio etc... Not someone we have needed to use a lot so far, but I think will become more important over the next few years.... and then we wait...
... for the social worker, who asks lots of questions and then we usually wait.....
.... to the nurse to check if we can leave!
Then we visit the receptionist to make a new appointment, generally in another 6-8 weeks!
That is a typical clinic visit at the moment. lots of screaming, lots of questions and a heap of waiting around. After clinic I am usually so exhausted that I go home and get nothing done for the rest of the day!
Once we get there we see the receptionist and the questions begin. Then we wait in a waiting area and avoid sitting close to anyone else (due to the risk of cross infection people with cf are not meant to be closer then 1m apart). Then a nurse takes us to the scales and we weigh and measure El, which she usually screams for! Then we are taken to our own room, where we wait ...
...For the doctor, never the same one which drives me mad. The doctor asks lots of questions and listens to El's chest and pokes her tummy (both of which El screams through!). and then we wait...
...For the physio, who asks more question. And generally takes a cough swab (sticks a cotton bud kind of thing down Em's throat) (which she screams through -can't blame her for screaming for this one). And then we wait..
...for the dietician who checks her growth chart,asks what El eats in a typical day, and makes suggestions on what we could improve and then we wait....
... for the occupational therapist who asks lots of questions and offers support and ideas for giving/taking medications, and doing physio etc... Not someone we have needed to use a lot so far, but I think will become more important over the next few years.... and then we wait...
... for the social worker, who asks lots of questions and then we usually wait.....
.... to the nurse to check if we can leave!
Then we visit the receptionist to make a new appointment, generally in another 6-8 weeks!
That is a typical clinic visit at the moment. lots of screaming, lots of questions and a heap of waiting around. After clinic I am usually so exhausted that I go home and get nothing done for the rest of the day!
31 Days of May the CF Way - Day 5 Diet, Fat, Calories & Creonsb
People with cystic fibrosis use a lot of energy to breathe and go about their daily business. As a result of this they need about 150-200% of the energy requirements of a normal person. To help El meet her daily needs we add fat to most things she eats. For example J and Em might have porridge for breakfast with milk and honey. El will have hers with cream, milk (full fat), salt, and honey. For salds I coat hers in olive oil. I add coconut oil or butter to pasta with sauce. Custard and yoghurt we add cream to. When J and Em have juice she has chocolate milk with 9g of fat. We constantly try to get as many calories in each mouthful of food as possible.
With the extra additions to her food and choosing high fat options, El has been able to grow at a normal rate. Except for when she is sick. Remember how tired you feel when you are sick? That is because your body uses up extra energy to heal itself. When she is sick EL tends to lose weight and her appetite decreases, not a great combination! I made up my mind during her first admission that I would never force feed her or stress (outwardly) about how much she is or isn't eating. I do not want to make eating stressful for her.
I am becoming quite expert at judging how much fat is in various kinds of food, and working out how many enzymes (creon) she needs!
With the extra additions to her food and choosing high fat options, El has been able to grow at a normal rate. Except for when she is sick. Remember how tired you feel when you are sick? That is because your body uses up extra energy to heal itself. When she is sick EL tends to lose weight and her appetite decreases, not a great combination! I made up my mind during her first admission that I would never force feed her or stress (outwardly) about how much she is or isn't eating. I do not want to make eating stressful for her.
I am becoming quite expert at judging how much fat is in various kinds of food, and working out how many enzymes (creon) she needs!
Wednesday, May 4, 2011
31 Days of May The CF Way - Day 4 Admissions
31 Days of May The CF Way - Day 4 Admissions
El has had 3 admissions.
Admission 1 - I wrote about on day 2 the first year
Admission 2
Was also in her first year. she was ten months old and it was the week after christmas. She had been ill all through christmas we were doing at least 3 physio sessions a day, she was put on antibiotics but she wasn't improving.On the 27th of December she almost completely stopped eating and drinking not even breast milk. I took her into emergency and she was admitted. They didn't really do much. They put in an ng tube which she promptly pulled out. They also weighed all her nappies to see how much fluid there was. They took bloods and continued on with her antibiotics. Over the next day she bagan to improve and they found out that she had adeno virus. So after watching her for a further 24 hours and seeing that she was continuing to improve they let us go home. We were in for 3 days. A nice short stay.We were home for new years too which was lovely!
Admission 3 was only 2 months ago, and was her first more serious admission (in my opinion) El had an awful cough for a number of weeks before her annual review and had been on a couple of different antibiotics. At her annual review they decided to try two antibiotics together and bring her in for outpatients physio appointments keep an eye on her. I took all three kids and attended the physio appointment on the Friday and were planning to go to the museum with friends after. The physio rang to speak to the nurse who asked us to come and see the doctor who said that El needed to be admitted that day for about two weeks. (we were supposed to go to the beach for a week the following Monday so I was really unhappy - thankfully we were able to rebook for a few weeks later). I was shocked that she needed to be admitted that day!
So I left the two older kids with my friend for their museum trip and took El home and packed and headed back to prison (I mean hospital). I remember speaking to my friend and saying that I could handle anything as long as we could have our own room. Well of course we had to share a 3-bed room. Have i mentioned that I am a bit of a loner and hate having people around all the time. To put it mildly I was really unhappy - an admission, no holiday and sharing with 2 other patients and their famillies.
A and J and Em visited on the Saturday before the kids went to stay with Mum. I hate not having A and the children with me and find this the most difficult part of each admission.
I found out that El couldn't have a PICC line inserted until the Tuesday, so I knew we would have cannulas which have never gone well with El. She went through one every day before she got her PICC line on the Tuesday. On top of the 4 cannulas the levels of one of the drugs she was on had to be checked as too much can have dangerous side effects such as liver damage and hearing loss. This was done by finger prick and then squeezing blood out of her finger or toe. She had her levels tested twice as the first time it was too low.
El also had two physio sessions per day. At home she tolerates her physio fairly well. but in hospital it was terrible. Almost every session she had a different person and she was not happy, screaming and crawling off the bed to get away!! I started leaving because it didn't seem to be quite so bad if I was not there.
It came to the point that when anyone walked through our curtain El would hide behind me. Except for the people with food!! I have never seen her eat as much as she did those days in hospital! She gained 700g in the two weeks she was on antibiotics!
On the Tuesday El had a general and her PICC line was inserted. Other then being really tired she recovered quite well. It did bring back a lot of the memories of Em's surgeries, but at least I could recognise EL after the operation!! (after Em's lip repair I kept walking past her in the hospital because she looked so different!
The PICC line made life much easier!! She was hooked up to a bottle, which meant she could move much more freely. That afternoon the Hospital in the Home (HITH) nurse came and spoke to us about finishing her treatment at home! It depended on them getting her drug levels correct. So the levels were checked that night and were found to be good. so we could go home!!!!!
We left on the Wednesday night and for the remainder of the two weeks had physio at home twice a day and the nurse once a day to change her medicine! It was fantastic. The only trouble we had was her arm became a little red and sore so we spent the Sunday in the hospital to make sure it was ok, which it was. Also one of the bottles of medicine burst but we were on our way to clinic anyway!
On the Friday two weeks later the PICC line was removed, which she hated, and was disgusting. (thankfully I had watched on you tube (yes A I had to see) so knew kind of what to expect). It was such a relief that the two weeks were finished. I am so thankful that we could do HITH, as sharing a room was driving me crazy!!!
I know I keep saying that having our family split up is actually the worst part but it really is awful. They say that when a child has a life threatening illness, its not just the child who has the illness but the whole family, and I can not find the words to say how true that is!
El has had 3 admissions.
Admission 1 - I wrote about on day 2 the first year
Admission 2
Was also in her first year. she was ten months old and it was the week after christmas. She had been ill all through christmas we were doing at least 3 physio sessions a day, she was put on antibiotics but she wasn't improving.On the 27th of December she almost completely stopped eating and drinking not even breast milk. I took her into emergency and she was admitted. They didn't really do much. They put in an ng tube which she promptly pulled out. They also weighed all her nappies to see how much fluid there was. They took bloods and continued on with her antibiotics. Over the next day she bagan to improve and they found out that she had adeno virus. So after watching her for a further 24 hours and seeing that she was continuing to improve they let us go home. We were in for 3 days. A nice short stay.We were home for new years too which was lovely!
Admission 3 was only 2 months ago, and was her first more serious admission (in my opinion) El had an awful cough for a number of weeks before her annual review and had been on a couple of different antibiotics. At her annual review they decided to try two antibiotics together and bring her in for outpatients physio appointments keep an eye on her. I took all three kids and attended the physio appointment on the Friday and were planning to go to the museum with friends after. The physio rang to speak to the nurse who asked us to come and see the doctor who said that El needed to be admitted that day for about two weeks. (we were supposed to go to the beach for a week the following Monday so I was really unhappy - thankfully we were able to rebook for a few weeks later). I was shocked that she needed to be admitted that day!
So I left the two older kids with my friend for their museum trip and took El home and packed and headed back to prison (I mean hospital). I remember speaking to my friend and saying that I could handle anything as long as we could have our own room. Well of course we had to share a 3-bed room. Have i mentioned that I am a bit of a loner and hate having people around all the time. To put it mildly I was really unhappy - an admission, no holiday and sharing with 2 other patients and their famillies.
A and J and Em visited on the Saturday before the kids went to stay with Mum. I hate not having A and the children with me and find this the most difficult part of each admission.
I found out that El couldn't have a PICC line inserted until the Tuesday, so I knew we would have cannulas which have never gone well with El. She went through one every day before she got her PICC line on the Tuesday. On top of the 4 cannulas the levels of one of the drugs she was on had to be checked as too much can have dangerous side effects such as liver damage and hearing loss. This was done by finger prick and then squeezing blood out of her finger or toe. She had her levels tested twice as the first time it was too low.
El also had two physio sessions per day. At home she tolerates her physio fairly well. but in hospital it was terrible. Almost every session she had a different person and she was not happy, screaming and crawling off the bed to get away!! I started leaving because it didn't seem to be quite so bad if I was not there.
It came to the point that when anyone walked through our curtain El would hide behind me. Except for the people with food!! I have never seen her eat as much as she did those days in hospital! She gained 700g in the two weeks she was on antibiotics!
On the Tuesday El had a general and her PICC line was inserted. Other then being really tired she recovered quite well. It did bring back a lot of the memories of Em's surgeries, but at least I could recognise EL after the operation!! (after Em's lip repair I kept walking past her in the hospital because she looked so different!
The PICC line made life much easier!! She was hooked up to a bottle, which meant she could move much more freely. That afternoon the Hospital in the Home (HITH) nurse came and spoke to us about finishing her treatment at home! It depended on them getting her drug levels correct. So the levels were checked that night and were found to be good. so we could go home!!!!!
We left on the Wednesday night and for the remainder of the two weeks had physio at home twice a day and the nurse once a day to change her medicine! It was fantastic. The only trouble we had was her arm became a little red and sore so we spent the Sunday in the hospital to make sure it was ok, which it was. Also one of the bottles of medicine burst but we were on our way to clinic anyway!
On the Friday two weeks later the PICC line was removed, which she hated, and was disgusting. (thankfully I had watched on you tube (yes A I had to see) so knew kind of what to expect). It was such a relief that the two weeks were finished. I am so thankful that we could do HITH, as sharing a room was driving me crazy!!!
I know I keep saying that having our family split up is actually the worst part but it really is awful. They say that when a child has a life threatening illness, its not just the child who has the illness but the whole family, and I can not find the words to say how true that is!
Tuesday, May 3, 2011
31 Days of May the CF Way - Day 3 Medications
El's Current Medications
1 capsule creon 5000 per 3g fat
1 capsule creon 10000 per 6g fat
1 capsule abdek vitamins per day
(all taken in apple puree with salt)
1ml iron every 2nd day
5mls antibiotic every six hours (1/2 an hour before or 2 hours after food) ( yes I do get up in the middle of the night fo that one).
Creon is taken with everything she eats, which means she takes about 10 per day. Creon helps her to absorb her food, as her pancreatic ducts are blocked. We also add salt to everything she eats and drinks. She also has a high fat diet as she requires more calories to achieve normal growth.
We have one section of our fridge entirely dedicated to her medicines and another one which is half hers!
This list can vary and gets more complicated if she gets sick and more medicines get added in. Back in February before her admission she was on two antibiotics, which both had different times to be given. Luckily I have a special book where I keep track of medicines, physio and any communication I have with nurses, GP's etc... Funnily enough A didn't even know this book existed until recently!!!
1 capsule creon 5000 per 3g fat
1 capsule creon 10000 per 6g fat
1 capsule abdek vitamins per day
(all taken in apple puree with salt)
1ml iron every 2nd day
5mls antibiotic every six hours (1/2 an hour before or 2 hours after food) ( yes I do get up in the middle of the night fo that one).
Creon is taken with everything she eats, which means she takes about 10 per day. Creon helps her to absorb her food, as her pancreatic ducts are blocked. We also add salt to everything she eats and drinks. She also has a high fat diet as she requires more calories to achieve normal growth.
We have one section of our fridge entirely dedicated to her medicines and another one which is half hers!
This list can vary and gets more complicated if she gets sick and more medicines get added in. Back in February before her admission she was on two antibiotics, which both had different times to be given. Luckily I have a special book where I keep track of medicines, physio and any communication I have with nurses, GP's etc... Funnily enough A didn't even know this book existed until recently!!!
Monday, May 2, 2011
Day 2 "The first year"
A lot of the memories of the first year with El are hazy. I think I somewhat existed just by plodding through the day one step at a time. A few times do stand out to me, so I will write about those.
I remember the first time we went away after El's diagnosis, for a couple of nights, and how deeply it struck me that even though we were on holiday we still had to do all of El's medicines and physio, that there would never be a holiday from them. Not on birthdays, christmas or holidays. That we could never escape from CF.
Another time that stands out is her first cold, which was very stressful. Although I had two other children and knew what was ok for them and what wasn't, the "rules" were very different for her.
Along with her first year came her first admission at 6 months. She had a terrible cough for about six weeks before she was admitted. Unfortunately we were in the same ward that Em had been in, where I had had an awful experience. Thankfully it was much better with El. We also had our own room which was wonderful, I had shared for all admissions with Em except one. We stayed in for nine days, but were able to escape for walks sometimes, which was nice. THe hardest part is being separated from A, and J and Em. I also get awfully sick of all the questions, all the time when I'm in the hospital. And having to talk to so many people. I really prefer to be alone then have people all around me 24 hours a day!
I am sure there are about a million other stories I could tell. but they are the things that really stick out in my mind about the first year.
I remember the first time we went away after El's diagnosis, for a couple of nights, and how deeply it struck me that even though we were on holiday we still had to do all of El's medicines and physio, that there would never be a holiday from them. Not on birthdays, christmas or holidays. That we could never escape from CF.
Another time that stands out is her first cold, which was very stressful. Although I had two other children and knew what was ok for them and what wasn't, the "rules" were very different for her.
Along with her first year came her first admission at 6 months. She had a terrible cough for about six weeks before she was admitted. Unfortunately we were in the same ward that Em had been in, where I had had an awful experience. Thankfully it was much better with El. We also had our own room which was wonderful, I had shared for all admissions with Em except one. We stayed in for nine days, but were able to escape for walks sometimes, which was nice. THe hardest part is being separated from A, and J and Em. I also get awfully sick of all the questions, all the time when I'm in the hospital. And having to talk to so many people. I really prefer to be alone then have people all around me 24 hours a day!
I am sure there are about a million other stories I could tell. but they are the things that really stick out in my mind about the first year.
31 Days of May the CF Way - Day 1 Diagnosis
After having a super stressful first year with my second child, (Em had a cleft lip and palate, which meant three operations in her first 14 months, expressing milk, and feeding difficulties and lots of appointments) I was looking forward to having a nice normal baby. El had her heel prick test done at home and I didn't think anything more of it. I was a little concerned about a few things I had noticed and couldn't shake the feeling that something was wrong, but didn't share my feelings with anyone.
We had just arrived home from swimming at about 10am on a Wednesday. El was asleep so I left J and Em playing and decided to have a lie down, when the phone rang. J answered and brought it in to me. The person on the phone said, Hi I am doctor such and such and I am phoning to tell you that El has had a positive result to one of her heel prick tests. I said which one. and she said, cystic fibrosis. My initial thoughts were of cerebal palsy and I thought no they've got it wrong. Then it clicked, I said that is a problem with the lungs? she said yes that is when I completly lost it and she said that somewone from the children's hospital would ring. And I was left alone. I had to calm down and phone A and tell him and wait for the hospital to phone.
We went to the hospital the next day and were introduced to a world of medication, physio, dieticians, social workers and realised that our lives would never be the same- ever.
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We had just arrived home from swimming at about 10am on a Wednesday. El was asleep so I left J and Em playing and decided to have a lie down, when the phone rang. J answered and brought it in to me. The person on the phone said, Hi I am doctor such and such and I am phoning to tell you that El has had a positive result to one of her heel prick tests. I said which one. and she said, cystic fibrosis. My initial thoughts were of cerebal palsy and I thought no they've got it wrong. Then it clicked, I said that is a problem with the lungs? she said yes that is when I completly lost it and she said that somewone from the children's hospital would ring. And I was left alone. I had to calm down and phone A and tell him and wait for the hospital to phone.
We went to the hospital the next day and were introduced to a world of medication, physio, dieticians, social workers and realised that our lives would never be the same- ever.
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31days of may the CF Way
On facebook a group has organised an awarness campaign for the 31 days of may so each day I'm going post about a different topic. For the whole of May.
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