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!
Friday, May 6, 2011
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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