In a carry on film type of way.
The hospital have lost yes lost £350 worth of Joe drugs that were meant to mean we didnt have to go to the ward on Xmas day.
How do you lose drugs surely that cant be safe by any means at all.
Im beyond annoyed but anyway.
Harry Finished school last wed with an excellent report.
On Saturday we took both to christingle at Rochester catherderal, which Joe loved or rather he loved eating the sweets on the christingle.
We have seen pagan friends for yule and Harry is now sitting with daddy making a rag doll....
Watch this space for news about the drugs!
Tuesday, December 22, 2009
Friday, December 04, 2009
A Day in Our lives.........
Thought this would be good from a memory point of view.
2.30am alarm goes off, give Joe 80mls of milk out of his bottle,change nappy go back to sleep.
5.00am give antibiotics to Joe, shower dress.
5.30am give Joe 80ls of milk and first lot of heart drugs change nappy.
5.45am try to drink a coffee and have breakfast with ark in peace.
sort bags Make up milk prepare rest of am drugs.
6.30am Heart drugs (again!)
7.15am Harry up next hours we get ready to leave for school, leave at 8.15
Harriet in school 9.00 to 12.15
during this time Joe has physio needs bloods taken I try to fit in home ed planning.
12.15 we leave school get the train home, Have lunch cheese sandwich and banana every day Harrys a creature of routinue.
This afternoon working on project on Grace Darling and RNLI, draw pictures to represent parts of graces life used ICT to type up labels and practice spelling.
Read Oxford reading tree book for school tomorrow.
Harriet does art while I do laudary give Joe feeds and meds.
Do spelling test for school and handwriting practice
We vary what we do each day but cover all national curriculum subjects each week with a montessori flavour.
the evenings more drugs milk feeds baths bedtime stories and bed for kiddywinks, I crawl into bed at 11.30pm and wait for the 2.30am alarm!
Its not that bad once you get used to doing five things at once and the lack of sleep.
A normal day is also umpteen phone calls and doing planning and record keeping for Harriet as well as the normal house stuff.................
2.30am alarm goes off, give Joe 80mls of milk out of his bottle,change nappy go back to sleep.
5.00am give antibiotics to Joe, shower dress.
5.30am give Joe 80ls of milk and first lot of heart drugs change nappy.
5.45am try to drink a coffee and have breakfast with ark in peace.
sort bags Make up milk prepare rest of am drugs.
6.30am Heart drugs (again!)
7.15am Harry up next hours we get ready to leave for school, leave at 8.15
Harriet in school 9.00 to 12.15
during this time Joe has physio needs bloods taken I try to fit in home ed planning.
12.15 we leave school get the train home, Have lunch cheese sandwich and banana every day Harrys a creature of routinue.
This afternoon working on project on Grace Darling and RNLI, draw pictures to represent parts of graces life used ICT to type up labels and practice spelling.
Read Oxford reading tree book for school tomorrow.
Harriet does art while I do laudary give Joe feeds and meds.
Do spelling test for school and handwriting practice
We vary what we do each day but cover all national curriculum subjects each week with a montessori flavour.
the evenings more drugs milk feeds baths bedtime stories and bed for kiddywinks, I crawl into bed at 11.30pm and wait for the 2.30am alarm!
Its not that bad once you get used to doing five things at once and the lack of sleep.
A normal day is also umpteen phone calls and doing planning and record keeping for Harriet as well as the normal house stuff.................
Tuesday, December 01, 2009
Have you ever thought..............
You are surrounded by people who are eant to know there job but dont.
The local hospital once again dont get Joe which has left us in more than one sticky situation, and its normally e that rally the troops chases the doctors and explains that a baby with open bleeding rashes and a bad white blood cell count is at high risk of blood poisioning surely this is basic stuff surely.
Harrys good and the small school is excellent shes keeping up well and reading like a pro........projects Im doing with her at the moment include the RNLI and houses and homes lots of xmas stuff too.
The above photo is both of the while Joe was in hospital in March up to date photos to follow.
Saturday, October 31, 2009
Its been so long........
Its been such a while, life here has been getting used to having Joe home and home education. Considering the review and where as a family we go from this point. Its been good bad and down right bleek.
We have learned more about Joe than we ever thought possible and learn more very day, some times I here myself speak and thinks who is this person, I talk medical language as easily as educational speak now.
Joes doing well at the moment but we can never count our chickens, since a last wrote two boys world wide have died of this disorder one only 24hrs after becoming ill, its scary and you live on a strange knife edge.
We have also found out how poor and nonexistant support for parents with chronically ill children is, and if you want anything you have to fight. I still find the well you get DLA Carers and tax credits. yes but that means we are £30 per week better off than when we were both working, I gave up mu Job and Mark now works close to home dropping from goodish pay to minimum wage and when you calculate travel to appointments, specialist equipmenr thats not provided any childcare, or heaven forbid you want a nights sleep, it eats into your tiny disposal income.
And guess what we then did to amke money evn tighter thats it we arranged for Harry to spend fifteen hours a week at a small independent school, so I can do Joes appointments without her in tow, we are at the hospital four mornings a week at the moment, its an immence juggle.
So harrys at school for 15 hours and we are doing 15 hours on top of that at home shes flown throught the montessori primary curriculum is reading well, writings coming on and shes doing just brilliantly we have done lap books on Rochester castle, volcanos and water and rivers in the last six weeks.
its busy but we are doing okay.
We have learned more about Joe than we ever thought possible and learn more very day, some times I here myself speak and thinks who is this person, I talk medical language as easily as educational speak now.
Joes doing well at the moment but we can never count our chickens, since a last wrote two boys world wide have died of this disorder one only 24hrs after becoming ill, its scary and you live on a strange knife edge.
We have also found out how poor and nonexistant support for parents with chronically ill children is, and if you want anything you have to fight. I still find the well you get DLA Carers and tax credits. yes but that means we are £30 per week better off than when we were both working, I gave up mu Job and Mark now works close to home dropping from goodish pay to minimum wage and when you calculate travel to appointments, specialist equipmenr thats not provided any childcare, or heaven forbid you want a nights sleep, it eats into your tiny disposal income.
And guess what we then did to amke money evn tighter thats it we arranged for Harry to spend fifteen hours a week at a small independent school, so I can do Joes appointments without her in tow, we are at the hospital four mornings a week at the moment, its an immence juggle.
So harrys at school for 15 hours and we are doing 15 hours on top of that at home shes flown throught the montessori primary curriculum is reading well, writings coming on and shes doing just brilliantly we have done lap books on Rochester castle, volcanos and water and rivers in the last six weeks.
its busy but we are doing okay.
Tuesday, April 21, 2009
Home Ed here!
We are still home educating inspite of all that Joe has thrown at us we were very productive up to my due date and did a project on the Eden project as well as lots of work with addition and subtraction up to ten as well as reading using Oxford Reading Tree and Ruth Miskin. I then aimed to have a month off post birth, well it turned out to be a month that lasted from 20/10 until the end of January during this time we still did Oxford Reading Tree, lots of art, Harriet started drama class and she did three days a week for eleven weeks at the hospital school at the Evelina.
During Feb and March we worked on maths lots of maths number work, measuring weighing. We worked through stage one of the magic key which Harry loves and we did art, history of our local castle and looked at life cycles of animals birds and plants.
So in April we continued the above looked at both spaceshuttles and evacuation and rationing and started on the two times table. Oh yes and we have looked at continents and areas of water on a globe.
I think shes done very well.
During Feb and March we worked on maths lots of maths number work, measuring weighing. We worked through stage one of the magic key which Harry loves and we did art, history of our local castle and looked at life cycles of animals birds and plants.
So in April we continued the above looked at both spaceshuttles and evacuation and rationing and started on the two times table. Oh yes and we have looked at continents and areas of water on a globe.
I think shes done very well.
Sunday, April 19, 2009
Joe and Barth Syndrome
As the last two posts were bitty, I thought I would explain what Joe diagnosis now is
(for anyone who is interested) He has Barth syndrome or x linked cardio skeletal myopathy if you want to give it its posh name, it means he has cardiomyopathy an enlarged heart which means five heart drugs a day, skeltal myopathy hes muscularly very weak and floppy and neutropenic which means hes a real target for infection but he is very gorgeous.
the hardest thing still is getting my mind round the mortality rate with Barths there are adults with it but very few and overall there are only 120 ish cases in the world.
luckily we have an amazing team of doctors at the Evelina caring for us so we are in safe hands.
(for anyone who is interested) He has Barth syndrome or x linked cardio skeletal myopathy if you want to give it its posh name, it means he has cardiomyopathy an enlarged heart which means five heart drugs a day, skeltal myopathy hes muscularly very weak and floppy and neutropenic which means hes a real target for infection but he is very gorgeous.
the hardest thing still is getting my mind round the mortality rate with Barths there are adults with it but very few and overall there are only 120 ish cases in the world.
luckily we have an amazing team of doctors at the Evelina caring for us so we are in safe hands.
Saturday, April 18, 2009
Joe Joe Update Two
Again bits from another sites posts from mid January to date.
We have now been told our only realistic chance of survival is heart transplant...........
being assesed by great ormond street next week.
From what seemed like the end to
Hes off the ventilator and on CPAP!!!!!! We agreed to try him provided they were sure they could reintubabte if needed very fast a brill constultant did it and we are just using positibe pressure now.
He is very certainly living by his own rules.
Waiting to hear from great ormond street
Hes on Oxygen only spent 22 hrs on CPAP so hes breathing on his own!
Met the transplant co ordinator today, we have about twenty four hours to make a choice about wether or not to go to transplant.
think we have decided already really.
So we make appointment tomorrow to go to GOS to speak to the nurse specialists and go from there
Well we are weaning an iv heart drug to get onto an oral one then we are of to a ward, his heart has not improved on echo but is no worse either........
We really need him to be stable and to gain weight he is 3750 from a birth weight of 2460 and is nearly 14 weeks.
We have been told that itu admissions will be a regular thing as he will not remain on the level so to speak for very long at a time.
It is unlikely we will get home before a transplant (that is if we are listed) so we could be in hospital six plus months.
We were prepared for six months in hospital but
Were HOME!!!!!! as in all of us just till thursday then back for a review but hes holding it on the drugs....
Three cheers are needed for my little star I think.......I have also found a world wide forum for parents of Barth boys which is wonderful as I am gaining hints and tips, dont think I will be hitting EASY with this little one due to permenant three hour feed and a hospital type schedule but I am blessed he sleep through, we dont though drugs at 9pm 10pm 11pm 2am 5am......... plus changing sheets in the night he is on water tablets so he wees gallons but is only in size one newborn nappies.
Its odd having a four month old that behaves like a newborn from a movement point of view yet watches you eat and babbles I forget he is four months old and not a new born at times. We hope to start physio soon to help his muscle tone.
Then he collapsed again...
Well we are back in London in PICU hes got flu and being a man well you know, seriously though hes ventilated again very hot and not happy, collasped at the local hospital high speed ambulance ride again very sick little man with the normal might not make it comments.
We had a few days on the vent' then onto oxygen
We need to get him off oxygen before we can get home........if not home with oxygen via the local hospital and as they do not have a good track record with Joe so far so I do not want to go back. Arghhhhhhh
It looks like we are going to the local with oxygen and knowing there track record at not arranging things we will be there at least a month more like two as they really find it impossible to arrange anything and our consultant team cant intervene at a local level
At the local huge problems as usual massive complaint and lots of stress.
Apparently my baby doesnt have a heart problem at all its his lungs at fault and he will always be on oxygen
Since when? funny that doctors doing a reaseach project in lung disease in the under 2s isnt it what an idoit.
Give me dont strangle the staff vibes please and keep smiling vibes
Then finally
:)We Are Home!
We got home at twenty to six this evening with Joe on home oxygen hes sleeping all okay at the moment
The he did this
I have now told my little man any more antics and hes going on e bay....(only kidding) We got home on monday night okay tuesday we went as a day case to the london childrens hospital to have his heart drugs increased and guess what my little munchkin did spiked a temp a dropped his white blood cells we got home last night after three days of IV antibiotics.
Being at home for only twelve hours must be a record.......
Well its now mid april and we have been home three whole weeks, the longest since he was born and he is six months old on Monday.
We have now been told our only realistic chance of survival is heart transplant...........
being assesed by great ormond street next week.
From what seemed like the end to
Hes off the ventilator and on CPAP!!!!!! We agreed to try him provided they were sure they could reintubabte if needed very fast a brill constultant did it and we are just using positibe pressure now.
He is very certainly living by his own rules.
Waiting to hear from great ormond street
Hes on Oxygen only spent 22 hrs on CPAP so hes breathing on his own!
Met the transplant co ordinator today, we have about twenty four hours to make a choice about wether or not to go to transplant.
think we have decided already really.
So we make appointment tomorrow to go to GOS to speak to the nurse specialists and go from there
Well we are weaning an iv heart drug to get onto an oral one then we are of to a ward, his heart has not improved on echo but is no worse either........
We really need him to be stable and to gain weight he is 3750 from a birth weight of 2460 and is nearly 14 weeks.
We have been told that itu admissions will be a regular thing as he will not remain on the level so to speak for very long at a time.
It is unlikely we will get home before a transplant (that is if we are listed) so we could be in hospital six plus months.
We were prepared for six months in hospital but
Were HOME!!!!!! as in all of us just till thursday then back for a review but hes holding it on the drugs....
Three cheers are needed for my little star I think.......I have also found a world wide forum for parents of Barth boys which is wonderful as I am gaining hints and tips, dont think I will be hitting EASY with this little one due to permenant three hour feed and a hospital type schedule but I am blessed he sleep through, we dont though drugs at 9pm 10pm 11pm 2am 5am......... plus changing sheets in the night he is on water tablets so he wees gallons but is only in size one newborn nappies.
Its odd having a four month old that behaves like a newborn from a movement point of view yet watches you eat and babbles I forget he is four months old and not a new born at times. We hope to start physio soon to help his muscle tone.
Then he collapsed again...
Well we are back in London in PICU hes got flu and being a man well you know, seriously though hes ventilated again very hot and not happy, collasped at the local hospital high speed ambulance ride again very sick little man with the normal might not make it comments.
We had a few days on the vent' then onto oxygen
We need to get him off oxygen before we can get home........if not home with oxygen via the local hospital and as they do not have a good track record with Joe so far so I do not want to go back. Arghhhhhhh
It looks like we are going to the local with oxygen and knowing there track record at not arranging things we will be there at least a month more like two as they really find it impossible to arrange anything and our consultant team cant intervene at a local level
At the local huge problems as usual massive complaint and lots of stress.
Apparently my baby doesnt have a heart problem at all its his lungs at fault and he will always be on oxygen
Since when? funny that doctors doing a reaseach project in lung disease in the under 2s isnt it what an idoit.
Give me dont strangle the staff vibes please and keep smiling vibes
Then finally
:)We Are Home!
We got home at twenty to six this evening with Joe on home oxygen hes sleeping all okay at the moment
The he did this
I have now told my little man any more antics and hes going on e bay....(only kidding) We got home on monday night okay tuesday we went as a day case to the london childrens hospital to have his heart drugs increased and guess what my little munchkin did spiked a temp a dropped his white blood cells we got home last night after three days of IV antibiotics.
Being at home for only twelve hours must be a record.......
Well its now mid april and we have been home three whole weeks, the longest since he was born and he is six months old on Monday.
Saturday, February 21, 2009
Joe Joe Update
This is cut and pasted from another site I go on a lot Just to update what been going on with my little man.
24th December to 16th Jan
We have been back in PICU and is heart function is now really poor he wont be home for christmas and lets just say next christmas might not happen if he doesnt turn it around soon,
Please can I have all the vibes possible for an improvment on the next echo todays was the same...
A mummy whos heart is braking...........
We are in ICU
Joe has 2 percent heart function but is fighting ventilation.
Its still touch and go, waiting to see if drugs shipped from abroad work.
He may have a terminal condition that has caused his heart to fail we are waiting for results of a biopsy
He may also need to be transplanted.
He has amazed everyone as his condition is thought to be unsurviable.
We are taking it a day at a time now
Got woken by the phone at 2.30am to say he had vomited so he was back on IV glucouse due to the metabolic condition. (he cant be sick as he can have low blood sugar and develop brain damage fast) this am he was miserable crying in pain and fighting the vent his tummy swelled up so they did an x ray and he was full of wind literally so full you could feel his bowels through his skin, doctors did not want to give drugs for it so I had to spend the day trying to shift it massage cycling the legs holding upright which with a ventilator and four lines is a task.
Hes happier now after throwing up bile and wind, so we have to hope he can take his feeds from tomorrow.
We have an eight day wait and counting to see if its a terminal condition which is a living hell because he is so well looking on the vent.
Harriet is doing very well considering all that is going on.
Well hes not back on his feeds It looks like he has NEC basically it could mean his bowel could rot away, lots of antibiotics oh yes and a doctor who wants me to decide if we ressusitate if he arrests any ideas on that one ladies I feel sick just considering it but I also know if his heart stops with all the will in the world it wont restart its just too damaged.
we need a miricle now in the form of him either recoveing from the nec or his heart getting stronger so he would survive bowel surgery.
We have some but not all results back its not a respirtory chain defect which is good news as they are not compatable with life. Unless it is a wierd disorder that is very rare its either VLCAD the original diagnosis or barth syndrome which means cardiomyopathy (a large heart) very poor immune system and learning difficulties.
His heart is very poor and stress still causes him a heart rate of
210 plus per minute which could cause his heart to stop which is so scary.
its still a day at a time and he will be ventilated for the forseeable future.
but his echo was slightly better to....
small steps small steps.
Will Continue in my next post............
Miricles are possible they happen here every day......
24th December to 16th Jan
We have been back in PICU and is heart function is now really poor he wont be home for christmas and lets just say next christmas might not happen if he doesnt turn it around soon,
Please can I have all the vibes possible for an improvment on the next echo todays was the same...
A mummy whos heart is braking...........
We are in ICU
Joe has 2 percent heart function but is fighting ventilation.
Its still touch and go, waiting to see if drugs shipped from abroad work.
He may have a terminal condition that has caused his heart to fail we are waiting for results of a biopsy
He may also need to be transplanted.
He has amazed everyone as his condition is thought to be unsurviable.
We are taking it a day at a time now
Got woken by the phone at 2.30am to say he had vomited so he was back on IV glucouse due to the metabolic condition. (he cant be sick as he can have low blood sugar and develop brain damage fast) this am he was miserable crying in pain and fighting the vent his tummy swelled up so they did an x ray and he was full of wind literally so full you could feel his bowels through his skin, doctors did not want to give drugs for it so I had to spend the day trying to shift it massage cycling the legs holding upright which with a ventilator and four lines is a task.
Hes happier now after throwing up bile and wind, so we have to hope he can take his feeds from tomorrow.
We have an eight day wait and counting to see if its a terminal condition which is a living hell because he is so well looking on the vent.
Harriet is doing very well considering all that is going on.
Well hes not back on his feeds It looks like he has NEC basically it could mean his bowel could rot away, lots of antibiotics oh yes and a doctor who wants me to decide if we ressusitate if he arrests any ideas on that one ladies I feel sick just considering it but I also know if his heart stops with all the will in the world it wont restart its just too damaged.
we need a miricle now in the form of him either recoveing from the nec or his heart getting stronger so he would survive bowel surgery.
We have some but not all results back its not a respirtory chain defect which is good news as they are not compatable with life. Unless it is a wierd disorder that is very rare its either VLCAD the original diagnosis or barth syndrome which means cardiomyopathy (a large heart) very poor immune system and learning difficulties.
His heart is very poor and stress still causes him a heart rate of
210 plus per minute which could cause his heart to stop which is so scary.
its still a day at a time and he will be ventilated for the forseeable future.
but his echo was slightly better to....
small steps small steps.
Will Continue in my next post............
Miricles are possible they happen here every day......
The Consultation
No person shall be denied a right to an education. In the exercise of any functions which it assumes in relation to education and to teaching, the State shall respect the right of parents to ensure such education and teaching in conformity with their own religious and philosophical convictions.
HUMAN RIGHTS ACT 1998
Well its against my philosophical conviction to send my daughter to school or follow a standard timetable or allow her to be assessed.
Wonder where I could go with this.....
HUMAN RIGHTS ACT 1998
Well its against my philosophical conviction to send my daughter to school or follow a standard timetable or allow her to be assessed.
Wonder where I could go with this.....
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