So I'm back, didn't think i would feel the need to re-blog, thought it was out of my system.....Oops got that wrong.
I am finding people are not quite sure what to say to me for fear of not just my reaction but what theirs will be, you see i am facing the fact the future is a bit vague about Billy boy and nobody quite knows what to do or say...
Well they do, they go through the "if there is anything i can do you only just have to ask" or "just call if you need something", i really thought people knew me better, i don't/wont ask ever because i have always rolled my own way..my mistakes, my problem....my positives, my gain.
And besides when people have offered to help and i have said "you know if you could mow my garden while i am at the hospital or i have a basket of ironing" people have laughed and said "i have my own to do".........Oh OK, but don't offer your false words/gestures.
I think the most annoying is the "I will come and visit Billy in hospital", lets face it in that comment the right words are said, but the action just does not happen.
Billy has had two friends come and visit him in hospital and i completely applaud my friend who brought them, she is a very busy mum of 3 and she made the effort and you know what that is the only memory Billy gets by on for his time in hospital.
And while i churning out my complete anger about this, FAMILY!!!!. Billy has been in hospital since mid May my dad has visited twice, my aunt and gran once...... i come from quite a big family to, what happen, oh thats right nothing happened.
I do have a mum who yet again when the going gets tough she gets going, well she didn't get going she just hasn't bothered to call/visit/send a card, and do you know what that really fucking carries a sting, your own mother can not stand by and support you while you face one of the bleakest moments of your life.
So from the above you can probably tell i am pissed off with the kind words/offers that are said because people really don't know what to say.....please don't say it if you don't intend to put an action to it!!!Ggggrrrrr
So i feel I've got some of the moan out, think I'm just angry at the fact its my son that is sick, but so what you don't have to read this!!
Count to ten, suck it up, back to a happy place......
Billy has been so lucky this past week, his friends at school did a sponsored dance to raise money and bought him lots of toys, so Chris has spent the week constructing Lego and being beaten on ps3.
Billy is currently in Birmingham and we have a guess-ti mated date of discharge for the 3rd September, this year we hope, they didn't put he year on the date...Hhmmm should we question that!?!
So why so long in the lovely Brum.... well we are being trained to give Billy tpn/NG tube feeds. Currently Billy is receiving both, but with the view to reduce him off tpn,
Well i should explain what that is all about, tpn feeds are a complete nutritional way of feeding somebody for what ever reason is not absorbing the nutrients out of food, it is given via a central line (a cannula that is put it through a major vein in the neck and follows that vein around the heart, it then exits out of the body somewhere on the chest area, this becomes the entry point for treatment). It comes in two bags, one is called vamine this contains vit's, electrolytes (magnesium, potassium, calcium, salts) and a few other goodies the body needs to grow and repair. the other bag is called lipids this is full of fats (good ones) and proteins. Billy is hooked up to this feed for 14 hrs, it gives him chronic poops and pukes, however it is nourishing him and making his body grow, but it is horrible to watch your child that is a very dignified young man poo uncontrollably and then be offered pull up pants so he doesn't make so much mess, well we did make a mess, we cleared the wards linen stores, we cleared the supplies of throw away poo/puke bowels, we kept the nurses and cleaners busy wiping down poo and puke.....you may have guessed Billy said "no way" to the pull up pants!!!
The other feed is given via a NG tube (nasal gastric...tube down your nose to your guts), this is a milk feed that consists of MCT fats (medium chain fats that is suitable for Billy's illness), protein's and lots of calories to help him grow.
The plan is to try to ween Billy off tpn feeds as while this is good for helping him grow and nourish his body it can be very damaging to the liver, we don't know if this will work and his body will be OK with just NG feeds, nobody knows not even the doctors.
The other problem we face is that his spirit is breaking and the fight in him is getting weaker, that alone is the most heart breaking thing to watch, i have always said if you break the spirit it really is game over...after all that is what keeps most of us going through good and bad times, but your spirit would break being holed up in a room for months with visitors so sparse....yes i know back to the happy place please.
We have had some really good people raising funds and assisting us to get our house right to bring Billy home, so some thing are underway...just lots of painting for me to do.
I have a tough choice to make next week and i am not really very sure how to go about it, i can not ask for anybodies advice as it is only up to me.....
Finally DLA has been sorted so we have some money rolling in, not so tense when doing the food shop in Tesco now!
I am finding it very hard to be a mum at the moment, i have to be with Billy and be nurse, teacher, playmate, parent and live for the moment as we don't know whats around the corner. Then i come back to Jack who needs to live a normal as possible life and be fun mum for Jack and make up for the fact that half of his family are living in hospital and his real dad is just a prize fucking prick, who is missing out on Jack growing up as stated by him "Jack has to do it my way", but to be honest i am glad he is missing out because every time he gets near Jack, he and his wife do nothing but criticise Jack anything ranging from his school work to his appearance.
And as for being a wife, well...i don't think i can comment on that i would have to check in with Chris to see if that base is covered. We certainly can't fall out as we don't really see that much of each other.
So it really is just a wait and see kind of month inregards of Billy Bob.......I say my prayers pleading with the man upstairs to help Billy find a balance in his treatment so we can keep him for longer, but i always attach a bit of a clause on it that Billy has no suffering during this time, i bet God just rolls his eyes when he listens to my prayers coming in......
xxxx
Thursday, 28 July 2011
Wednesday, 22 June 2011
The story so far.....
I often wondered what people saw in creating a blog for every day events in their life, did they not have friends to talk to....
I think i am a very lucky person to have great friends who are my support structure in life and always felt that they were enough for me, but here i am creating a blog to let out whats on my mind, so you ask where are my friends, well they are close by, at the end of the phone, posting on face book, the list goes on!!
The true reason behind my new blog is my beautiful six year old son Billy, he has just been diagnosed with a rare disease called primary intestinal lymphangiectasia....say that after a few drinks!!
Up until September 2010 he was a healthy bean, then he started getting a bloated tummy, oh course as a mum of two my instant diagnosis was constipation, bit of medicine and off to school you go!!
Oops little did i know my world was to be turned upside down.
By November 2010 it was apparent that constipation was not the issue, so i took him to our GP who ran a blood test on my birthday to be precise.
The blood test was in the morning and the GP was waiting on our doorstep when we arrived home, you kinda know when that happens the shit is about to hit the fan!
So our medical journey began, Billy's kidneys were tested, then we were sent to Birmingham's Children's hospital liver unit, one week later we were told his liver worked fine and home we went for what would be our last medical free Christmas.
We then returned back to our local hospital in February 2011 where quite thankfully for us Billy's consultant had seen this disease once before over 10 years ago and made a lucky guess that it was this disease. I should point out that there is roughly about 15 cases worldwide of this disease (something another parent who's child has this disease told us), so you see why i say a lucky guess
Billy was put on to a extremely low fat diet (10grams per day....check out the back of any food pack and you will see the challenge in that) with mct supplements.
I should explain what this disease does, when you eat fats, in particular long chain fats (present in most foods) the lymphatic vessels in the small bowel draw out the long chain fats along with other nutrients the body needs processes them and sends them through the small bowel and off around the body via the lymphatic system to nourish the body.
Billy's lymphatic vessels in his small bowel however have not been able to process these fats and have clogged the lymphatic vessels, which in turn have burst,as the small bowel is always in use they struggle to repair even with a low fat diet. So they leak fats, Vitamins, other nutrients and proteins the body need to grow and repair, also with the leakage he also loses lymphocytes which are key to a strong immune system,we know this is happening because Billy's abdominal cavities fill with fluid called ascities which extend to all his limbs and face, so without medical intervention his body would be up the creek with out a paddle and taking on water....
March the 14th....the day of no return, etched in my mind forever!
Billy had been doing half days at school due to lack of energy (well you would have lack of energy if your body's vit's and other goodies were leaking into your body cavities as loose fluid), however he came out of school happy with some energy, his teacher commented he had joined in at break time with play, something we had not seen for months as he had just gone into his shell because he felt so ill all the time (i have said it must feel like being hit with the flu). By 7pm that night a sickness and poop bug had got him.
When the body is fighting any bug/virus the lymphatic system goes in to overdrive to attack the germ cells, however as Billy's lymphatic system is leaking his body cavities just blew up with fluid, he was struggling to breath as his heart was being crushed by fluid and his body's electrolytes (magnesium, essential for heart function) were on the floor...another 24 hrs and i would be a mum of one not two boys.
The doctors tried something they were a little cautious about which was a albumin/diuretic iv infusion. Albumin is one of the main proteins Billy loses, this is needed to transport hydration in the blood stream....big player. Great news it worked in reducing the fluid build up in his body and gave him some va va voom back, this still continues to be our main support in this disease.
So what happened next, we got transferred to Sheffield Children's hospital for a video capsule (a pill with a video camera in it that captures 15 photos a second through the guts), the docs came back thinking in was not the disease we know it is, but just a narrowing of the bowel, so surgery was sheduled...yippee end of this journey....wrong!!
Billy under went a double ballooned endoscopy and laposcopy where his guts were examined inside then pulled out and inspected on the outside too...still feel a little queasy thinking about that.
There it was primary intestinal lymphangiectasia over 3 metres in diffuse patches over my beautiful boys small bowel, malnourished him and wasting his immune system...bloody bastard evil disease!!!Gggggrrrr
So here we are 5 weeks after that diagnosis, still in hospital, completely knackered, skint as my hubby has come out of work, not through choice we could just not manage being sent to different hospitals looking after our jobs and other son.
I work 16 hrs per week so with that and tax credits/child benefit we are carrying on, i think i had more money coming in when i was 16yrs old as a Saturday part timer, in fact i know i had more coming in.
So back to my original point why am i blogging when i have great friends, well i value them for a start and to have the conversation with them that you face the fact that your youngest son may die, they get lost for words and so would i if the shoe were on the other foot, the write up about this disease is incurable, life threatening, at best managed with diet and drugs, at worst fatal...Hhmm, bit of a conversation stopper me thinks! or tear jerker.
So to off load to a blog where chances are nobody will read is like free therapy.
Last week Billy had a Hickman line fitted to enable the doctors to deliver TPN feeds (a complete nutrition drip feed run over 20hrs) however this has failed, so after a stressful start to this week where surgeons have messed us about, i waved good bye to my hubby Chris and Billy tonight as they have been transferred to Sheffield Children's Hospital to hopefully get a successful Hickman line fitted while i wait at home as our other son Jack returns from a Spanish school trip tomorrow and fit my job in somewhere around that, i feel a shit mother as i don't know which son to give my time to the most or even how to divided my time so they both get some of me as i feel sorry for myself...pity party at my house!!!
I need to get myself in gear to raise funds to get changes made at my home to apply for funding to do TPN feeds at home (they like a wipe down type of home so bacteria can be destroyed), my friends and some family have been fab and got some funds going already, that makes me feel overwhelmed that they care about us enough to do that.
I have subjected myself to the disability living allowance form, OMG, i though i was quite a clever person until i started that...gloom was upon me within 10 minutes of doing this form. I have been assured that we will struggle to get this even though Billy's mobility is decreasing and he is wheelchair bound for outdoor trips...however i will share a little Britain moment we had, Chris and Billy got ward leave for a couple of hours and decided to go and apply for council tax benefit, so while Chris is explaining to the benefit advisor about how Billy is struggling with his mobility and how bad it is getting, Billy announces he needs the toilet gets out of the wheelchair and walks to the toilet....my hubby sat just mortified!!
So to sign off, as a very new and valued friend told me who's daughter has this disease "one day at a time"
and that's just what i do.x
I think i am a very lucky person to have great friends who are my support structure in life and always felt that they were enough for me, but here i am creating a blog to let out whats on my mind, so you ask where are my friends, well they are close by, at the end of the phone, posting on face book, the list goes on!!
The true reason behind my new blog is my beautiful six year old son Billy, he has just been diagnosed with a rare disease called primary intestinal lymphangiectasia....say that after a few drinks!!
Up until September 2010 he was a healthy bean, then he started getting a bloated tummy, oh course as a mum of two my instant diagnosis was constipation, bit of medicine and off to school you go!!
Oops little did i know my world was to be turned upside down.
By November 2010 it was apparent that constipation was not the issue, so i took him to our GP who ran a blood test on my birthday to be precise.
The blood test was in the morning and the GP was waiting on our doorstep when we arrived home, you kinda know when that happens the shit is about to hit the fan!
So our medical journey began, Billy's kidneys were tested, then we were sent to Birmingham's Children's hospital liver unit, one week later we were told his liver worked fine and home we went for what would be our last medical free Christmas.
We then returned back to our local hospital in February 2011 where quite thankfully for us Billy's consultant had seen this disease once before over 10 years ago and made a lucky guess that it was this disease. I should point out that there is roughly about 15 cases worldwide of this disease (something another parent who's child has this disease told us), so you see why i say a lucky guess
Billy was put on to a extremely low fat diet (10grams per day....check out the back of any food pack and you will see the challenge in that) with mct supplements.
I should explain what this disease does, when you eat fats, in particular long chain fats (present in most foods) the lymphatic vessels in the small bowel draw out the long chain fats along with other nutrients the body needs processes them and sends them through the small bowel and off around the body via the lymphatic system to nourish the body.
Billy's lymphatic vessels in his small bowel however have not been able to process these fats and have clogged the lymphatic vessels, which in turn have burst,as the small bowel is always in use they struggle to repair even with a low fat diet. So they leak fats, Vitamins, other nutrients and proteins the body need to grow and repair, also with the leakage he also loses lymphocytes which are key to a strong immune system,we know this is happening because Billy's abdominal cavities fill with fluid called ascities which extend to all his limbs and face, so without medical intervention his body would be up the creek with out a paddle and taking on water....
March the 14th....the day of no return, etched in my mind forever!
Billy had been doing half days at school due to lack of energy (well you would have lack of energy if your body's vit's and other goodies were leaking into your body cavities as loose fluid), however he came out of school happy with some energy, his teacher commented he had joined in at break time with play, something we had not seen for months as he had just gone into his shell because he felt so ill all the time (i have said it must feel like being hit with the flu). By 7pm that night a sickness and poop bug had got him.
When the body is fighting any bug/virus the lymphatic system goes in to overdrive to attack the germ cells, however as Billy's lymphatic system is leaking his body cavities just blew up with fluid, he was struggling to breath as his heart was being crushed by fluid and his body's electrolytes (magnesium, essential for heart function) were on the floor...another 24 hrs and i would be a mum of one not two boys.
The doctors tried something they were a little cautious about which was a albumin/diuretic iv infusion. Albumin is one of the main proteins Billy loses, this is needed to transport hydration in the blood stream....big player. Great news it worked in reducing the fluid build up in his body and gave him some va va voom back, this still continues to be our main support in this disease.
So what happened next, we got transferred to Sheffield Children's hospital for a video capsule (a pill with a video camera in it that captures 15 photos a second through the guts), the docs came back thinking in was not the disease we know it is, but just a narrowing of the bowel, so surgery was sheduled...yippee end of this journey....wrong!!
Billy under went a double ballooned endoscopy and laposcopy where his guts were examined inside then pulled out and inspected on the outside too...still feel a little queasy thinking about that.
There it was primary intestinal lymphangiectasia over 3 metres in diffuse patches over my beautiful boys small bowel, malnourished him and wasting his immune system...bloody bastard evil disease!!!Gggggrrrr
So here we are 5 weeks after that diagnosis, still in hospital, completely knackered, skint as my hubby has come out of work, not through choice we could just not manage being sent to different hospitals looking after our jobs and other son.
I work 16 hrs per week so with that and tax credits/child benefit we are carrying on, i think i had more money coming in when i was 16yrs old as a Saturday part timer, in fact i know i had more coming in.
So back to my original point why am i blogging when i have great friends, well i value them for a start and to have the conversation with them that you face the fact that your youngest son may die, they get lost for words and so would i if the shoe were on the other foot, the write up about this disease is incurable, life threatening, at best managed with diet and drugs, at worst fatal...Hhmm, bit of a conversation stopper me thinks! or tear jerker.
So to off load to a blog where chances are nobody will read is like free therapy.
Last week Billy had a Hickman line fitted to enable the doctors to deliver TPN feeds (a complete nutrition drip feed run over 20hrs) however this has failed, so after a stressful start to this week where surgeons have messed us about, i waved good bye to my hubby Chris and Billy tonight as they have been transferred to Sheffield Children's Hospital to hopefully get a successful Hickman line fitted while i wait at home as our other son Jack returns from a Spanish school trip tomorrow and fit my job in somewhere around that, i feel a shit mother as i don't know which son to give my time to the most or even how to divided my time so they both get some of me as i feel sorry for myself...pity party at my house!!!
I need to get myself in gear to raise funds to get changes made at my home to apply for funding to do TPN feeds at home (they like a wipe down type of home so bacteria can be destroyed), my friends and some family have been fab and got some funds going already, that makes me feel overwhelmed that they care about us enough to do that.
I have subjected myself to the disability living allowance form, OMG, i though i was quite a clever person until i started that...gloom was upon me within 10 minutes of doing this form. I have been assured that we will struggle to get this even though Billy's mobility is decreasing and he is wheelchair bound for outdoor trips...however i will share a little Britain moment we had, Chris and Billy got ward leave for a couple of hours and decided to go and apply for council tax benefit, so while Chris is explaining to the benefit advisor about how Billy is struggling with his mobility and how bad it is getting, Billy announces he needs the toilet gets out of the wheelchair and walks to the toilet....my hubby sat just mortified!!
So to sign off, as a very new and valued friend told me who's daughter has this disease "one day at a time"
and that's just what i do.x
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