You must understand when i come back to this blog, i am struggling with my day. Today i have felt tears well up twice, not for no reason,the first time today i was speaking to a friend, just catching up about the kids and she told me she reads my blog and keeps an eye out for me on FB, but she doesn't know what to say to me on there....she is not the first person to make that comment and i am sure she wont be the last....what do you say to a person when they have faced the fact their youngest child is ill, you can do the pleasantries etc, but as a caring human being you know that you would be suffering such heart ache if you were faced with it you wouldn't know what you wanted to hear.
The second time i felt tears well up was talking about a lovely friend who passed away recently. She was only 45 and very vibrant with a real passion for life, she only found out she was ill on the 21st October 2011 and left us on the 29th November 2011, she touch lots of peoples lives in a positive way...for me it was the great support she has given to me and my family over the past 12 months. She was the only person brave enough to call me when i hit rock bottom (the time i had to accept Billy may die) again this was a sobbing and snorting conversation, but she listened, she empathised, but best of all she made me laugh by the end of that call. She kept in touch even when she was on holiday, i should explain this lady was Billy's head teacher, i knew her only via school and through being on the governing body at the school.
Sam Hurst early departure has left a large hole in the school and local community, i don't think we will ever forget her..i know i won't.
Back to my story of Billy Bones (the name Bones came from Sam Hurst and just stuck with most people including medical staff)....
Billy pulled through ICU, he pulled through HDU, we spent 8 long weeks with the cardiac team on ward 12 in BCH, who saw us at our lowest, they gave us hugs when we had low days, they laughed with us when we had funny moments with Billy, they celebrated with us when we had minor medical victories (such as achieving good blood results). They are still happy to see us when we go back for check ups, they always give Billy big hugs (much to his disgust).
So how is Billy now....
We are on a good roll at the minute, we have been out of hospital for 2 months, Billy's acsities (fluid filled tummy) is very low, his blood results have all been good so far.
Billy still has an NG tube in which he receives a milk feed through, this contains high concentrates of carbs, proteins, vitamins, electrolytes and minerals and 1800 calories a day, Billy has put fat on, but lost weight....bizarre i know and i wish that worked the same way for me, the weight on his body was fluid weight he has no fat left on his body back in August. However as the fats that do Billy's body harm have been removed out of his diet his body can now absorb the other goodies so he is now growing and putting fat on.
There is a lot more science to it than that, but to explain more you would realised just what a medical bore i can be. But he is my son and its my job to know it all.
We have no other plastic line in his body, which is great news in my world as many sufferers live with central lines for years.
We have a more than generous drug regime to follow 3 times a day, but this is not an issue as he is at home not in the hospital.
Billy has gone back to school for 2 hours a day, which i struggle with, we all know kids are just walking germ greenhouses and with Billy being immune compromised, it just gives me a bit of worry each day about what will happen, but Chris and I have said all along there is no point getting him to a level of good health not to let him live his life fully.....but!!!
I will get there i am sure and i will get there in letting the cotton wool relax a bit.
One thing i do find a bother is people staring at Billy as he has an NG tube in and do you know what it is the bloody adults who are the worst for it, you would think they would know better.
Despite everything that Billy has been through and the heart ache we have had this past 12 months, he is a happy bean, he puts up with blood tests and daily heparin (blood thinner) injections, he still bounces around like a complete loon and best of all he makes us laugh with his cheeky comments.
There are lots of signs, postcards, bumper stickers that say one life live it, one life enjoy it, until you are face to face with death you really just don't get it, i know i certainly didn't and if Billy had been sick and made a full recovery, i would have become complacent about it again, but we sit it an odd position with Billy, while he is well ( apart from a cold) now, his disease remains incurable and life threatening and to put on top of that his heart problem is more than likely to come back and he will require more open heart surgery so again another toe still placed on the reapers doorstep.
There are days when the thought of this gets to much, i have a sneaky weep, then suck it up and carry on cos life is for living so that's what i going to do...one day at a time (Sue).xxxxx
Wednesday, 7 December 2011
Wednesday, 9 November 2011
Lands End to John 'O' Groats
Well when you have kids no one tells you how much hard work it is....well to be fair they do but you are so wrapped up in the perfect baby bubble their advice just drifts right pass your few working pregnancy brain cells!
But when you get a sick kid in the mix...well...Hhmmm... You realise you have something precious to hold on to, all that whingeing you do about the school run, the mess, you know all the everyday small stuff that can trouble you, well it just doesn't seem to matter anymore!
Now don't get me wrong i still do all of the above and i think i do it to fit in because as soon as the person I'm talking to tells me about their days challenges of parenthood i know i stop listening and go on to my nod in the right places, give the right advice mode but i know i am truly disgusted with myself for entering in to the trivial stuff again.
So my post, why Lands Ends to John 'O' Groats.... i felt the title was fitting for the journey my family and i have been on this summer, you see it hasn't been sight seeing lovely parts of our great country, its been stuck in a hospital praying for my youngest son Billy to fight for life, its been stuck on a motorway...yes you my beauty 'the M6' travelling between hospital and home, its about trying to be a good mum to my eldest son Jack and not put down his minor issues that as an adult you view teen challenges as, its been trying to get a house decorated in the hope for Billys return (still an ongoing challenge), its been fielding a million calls about Billys future care plans.
Oh and watching the world just carry on without me, it reminded me of a song, think the Stone Roses sang it (to be fair if you liked the Stone Roses when they produced their first edtion tape/vinyl you really wouldnt remember if they sang these lyrics) , the lyrics sang along 'stop the world i want to get off'....part of me wanted to get off this summer and part of me wanted to say bloody wait a minute for me will ya?
One thing i can share with you this summer has sorted the friends from the aquintances and i certainly have lots more aquintances than i ever did.
So i should get on with whats happened really.
So the summer holidays started for us with Billy and Chris heading to Birmingham Childrens Hospital (BCH) for training on TPN (total parental nutrition, which is a feed delievered intravenously via a tube in the chest).
I thought i was handling it well, but the day came for them to leave and i that morning had the dentist, i was going for a tooth out, now i have had this done before (3 wisdom teeth down, 1 to go), i sat in the chair a bit sweaty knowing what was coming. As the dentist numbed me up i felt my eyes water, but then realised it wasnt my eyes watering, i was actually crying. I completly panicked, sat bolt up right and fought to get out of the chair.
The dentist, who i seen for over 14 years asked me what was happening and through my sobs and snorts i explained about Billy, i said he was dying because if you had seen how malnourished and ill he was, you would have thought this to, in fact that is what many doctors thought. Our consultant at our local hospital wrote a letter to Make a Wish foundation to grant Billy what he wanted, this letter was written and sent the same day, any of you who have gone through the consultant journey knows that just doesnt happen... As a mum in my heart i knew my baby boy was close to death.
So this same day as the dentist trauma, should add here she didnt bother taking my tooth out, i think my sobbing and snorting for half hour knocked the wind out of her sails! Billy and Chris headed of to BCH which proceeded in more time spent sobbing by me with a sore face from all the dentist injections!!
One thing i found out about myself is that i can deal with emotional pain, but chuck physical pain in on top and it just tips me over straight to sobsville!!
So Billy goes to BCH and the gastro team make a plan on how to tackle Billys Lymphangiectasia, they start him on TPN every day for 16 hrs along side a NG feed (this is tube put down the nose to the guts to deliever food directly to the gut). I can safely say i have never seen so much sick and shit fall out of a child, he moved and the stuff fell out.
I felt my child was humliated, degraded and broken spirted, i know i certainly was...so i kicked off, any of you who know me well, know that is not my style, i kicked off so bad they called for a physicatric consult...i scared the shit out of Billy which wasnt hard cos the stuff was falling out anyway.
Next day came as did my phys consult, i just brazened the thing out, i told her i am just normal, i am reacting to my child being put through a gruelling process and he is just getting worse, so i shouted, i coloured the air a little blue with ill laungauge, i may have told the doctors to fuck off, i may have insinuated he was a prick who knew fuck all, i may have kicked a few things on my way out of the door (couldnt slam any doors because they all had those bloody safety features on!!) but i am just a normal human being, anyway she agreed and sorted a team meeting to get plans laid...more like to keep me quiet.
So the team meeting rolled on, our consultant there, this is how i will describe him, you know the kid at school, wasnt blessed in the looks department, glasses, weighes 7 stone wet, is sooo clever and never fit in to any group well thats him. only he has found his niche in life...i feel truly sorry for any of the poor bastards who come under his care who bullied him at school!!!
So he tells us the plan, underlying in all he says is if they can not get Billy to settle down with any feed they will send us back to our local hospital and well there wasnt an and. He explains to us there will be no more tests, Ah at last some positive news, we wrap the meeting up, the chairs have not even cooled down from our arses being on them and he is ordering a contrast CT scan....what...you said no tests...my dummy quite firmly fell back out of the pram at this point!
Anyway this is a turning point that we have to thank and have thanked the consultant for, they found a blood clot on the scan, i was in Stoke taking care of Jack when Chris called with the news, in my mind i was like yeah it will be fine blast it with drugs happens all the time on Casualty...that was Mondays call followed by a sleepless night...then came Tuesdays call...the doctors had reviewed the scan and decieded it the clot was to big and it was to dangerous to hit with drugs, sooo, open heart surgery it is then, roll on sobbing!!!
I text my boss who called me right back, again a sobbing and snorting conversation was in play, she was great, dont think she got most of what i was saying though.
Jack and i caught the train down that afternoon, poor Jack was mortifed his mum was openly sobbing on the train, but i couldnt bloody stop, this was serious shit, my stomach was lurching all over, the only way i can describle it is you know when you did something so wrong as a kid and you knew you was for the high jump when you got in well that was it.
I had felt bad having to explain to Jack once already that Billys condition is life threatening, but to put in to the mix open heart surgery just made me feel so sad at crushing his innocence so early in life, but i have never wanted in all of this journey for Jack to feel he wasnt part of it all.
Getting to the hospital i tried so hard to keep my tears locked away in front of Billy. He was so sick, he just didnt really move much at all, i just laid with him, taking in every bit of his face and his beautiful blue eyes that were hidden by facial ascities.
Sleep would not come that night, well it did in dribs and drabs but i kept waking myself with crying.
The day of surgery came, Grace who had been a nurse who looked after us during our time on that ward stuck to us like glue that morning, she made sure the cardiac liason nurse got to us first thing, our surgeon got to us and explained everything.
Now when i tell you this and if you dont believe in God this might sway you a bit... when Chris and I looked at training for TPN feeding we had planned to go to Sheffield Childrens hospital, why? Well my friends and family are all that way so support would be on hand, however on talking to our local consultant she explained that our local funding for TPN at home matched better with Birminghams and it was easier to access, so Brum it was.
In BCH they have one of countrys top cardiac units for kids and one of Europes top cardiac kids surgeon...the lovely Mr Brawn, if we had gone to Sheffield would we have had the nosy gastro consultant who ordered the CT scan, we know the cardiac unit is not as good and Mr Brawn does not work there...so the guiding hand of God, well i like to think so.
Wednesday 3rd August 2011, everything people are saying to me is going over my head, im scared, my head is so loud i wonder if people can hear it, every time Billy has gone into surgery i can not get into the anesthetic room, i start crying so Chris does the honors so i dont upset Billy. But on this day i go in, tears in my eyes but holding them in kinda! We are accompanied by 3 nurses from the ward, all trying to be jolly, but they know we are completely devestated by what is happening, the bit i should add to this is Billy has ascities, this is fluid that empties in to any space in the body it can find, so to open the body up via knife allows an instant release of pressue which can send the venous system and organs in to failure within minutes. We dont expect him off the table.
Now heres the bizarre bit, after they put him to sleep and we go out of the room i feel strangely calm, like i was dropping him off at school, i even go and eat dinner something i have never been able to do, had i resided myself to the fact he may die, i dont know, was God watching over us and calming us?? Again i like to think so.
We left Billy at 2pm and dont get a call until 6.30pm, we catch up with him in intensive care, anyone who has been in ICU knows it is bloody intense, we spend some time talking to him and the nurses geting the run down of all the machines and what the surgeon found, he found a clot 5cm (length) by 1cm (width) in his vena cava (main heart & lung artery) which tailed off all the way in to his right jugular vein and they also found his heart sac had thickened so they cut part of that away, they drained 1400ml of fluid out of his body cavity in the op to. There are just so many wires and drugs! We make our minds up that the best thing to do is get some sleep and again rather bizarrly i sleep.
We arrive at ICU the next day to find people running past us with buckets of crushed ice, we dont pay any attention until we get to Billy, its all for him, his is spiking a temp, he is wrapped in a cooling sheet and his head is being wrapped in ice packs...bloody fuck, fuck, fuck, I can see Chris is terrified and im not far behind him, but our plan for the day had been to read to Billy even though he was sedated and was being given a muscle relaxant as his chest bone was still open so he wasnt allowed to move. The doctor tells us what they think is happening, Billy had to go on bypass in surgery and when the blood goes through the bypass machine as the blood re-enters the body the body knows it has been else where and thinks there is a infection invading the body and starts the fight process. They have to cool him fast so he doesnt suffer brain damage. His outer body temp is held at 27oC and his core is held around 34oC, we start to read to him, despite being sedated everytime he hears our voices his blood pressure raises...i am chuffed to pieces, my baby knows i there...until it is all crushed by a nurse who must be the doom and gloom master, she informs me Billy may just be having a seizure but they wouldnt know as he is so heavily sedated...i have many powers as a mum but talking to my child does not make them have seizures...bloody mare!!!
OMG!!! i have just re read this blog and looked at the time, im going to stop here and carry on another day, i thought i would just let some of my Ggggrrrs go in this blog as i have had a tough day...seems theres a few in my head.
TO BE CONTINUED........
But when you get a sick kid in the mix...well...Hhmmm... You realise you have something precious to hold on to, all that whingeing you do about the school run, the mess, you know all the everyday small stuff that can trouble you, well it just doesn't seem to matter anymore!
Now don't get me wrong i still do all of the above and i think i do it to fit in because as soon as the person I'm talking to tells me about their days challenges of parenthood i know i stop listening and go on to my nod in the right places, give the right advice mode but i know i am truly disgusted with myself for entering in to the trivial stuff again.
So my post, why Lands Ends to John 'O' Groats.... i felt the title was fitting for the journey my family and i have been on this summer, you see it hasn't been sight seeing lovely parts of our great country, its been stuck in a hospital praying for my youngest son Billy to fight for life, its been stuck on a motorway...yes you my beauty 'the M6' travelling between hospital and home, its about trying to be a good mum to my eldest son Jack and not put down his minor issues that as an adult you view teen challenges as, its been trying to get a house decorated in the hope for Billys return (still an ongoing challenge), its been fielding a million calls about Billys future care plans.
Oh and watching the world just carry on without me, it reminded me of a song, think the Stone Roses sang it (to be fair if you liked the Stone Roses when they produced their first edtion tape/vinyl you really wouldnt remember if they sang these lyrics) , the lyrics sang along 'stop the world i want to get off'....part of me wanted to get off this summer and part of me wanted to say bloody wait a minute for me will ya?
One thing i can share with you this summer has sorted the friends from the aquintances and i certainly have lots more aquintances than i ever did.
So i should get on with whats happened really.
So the summer holidays started for us with Billy and Chris heading to Birmingham Childrens Hospital (BCH) for training on TPN (total parental nutrition, which is a feed delievered intravenously via a tube in the chest).
I thought i was handling it well, but the day came for them to leave and i that morning had the dentist, i was going for a tooth out, now i have had this done before (3 wisdom teeth down, 1 to go), i sat in the chair a bit sweaty knowing what was coming. As the dentist numbed me up i felt my eyes water, but then realised it wasnt my eyes watering, i was actually crying. I completly panicked, sat bolt up right and fought to get out of the chair.
The dentist, who i seen for over 14 years asked me what was happening and through my sobs and snorts i explained about Billy, i said he was dying because if you had seen how malnourished and ill he was, you would have thought this to, in fact that is what many doctors thought. Our consultant at our local hospital wrote a letter to Make a Wish foundation to grant Billy what he wanted, this letter was written and sent the same day, any of you who have gone through the consultant journey knows that just doesnt happen... As a mum in my heart i knew my baby boy was close to death.
So this same day as the dentist trauma, should add here she didnt bother taking my tooth out, i think my sobbing and snorting for half hour knocked the wind out of her sails! Billy and Chris headed of to BCH which proceeded in more time spent sobbing by me with a sore face from all the dentist injections!!
One thing i found out about myself is that i can deal with emotional pain, but chuck physical pain in on top and it just tips me over straight to sobsville!!
So Billy goes to BCH and the gastro team make a plan on how to tackle Billys Lymphangiectasia, they start him on TPN every day for 16 hrs along side a NG feed (this is tube put down the nose to the guts to deliever food directly to the gut). I can safely say i have never seen so much sick and shit fall out of a child, he moved and the stuff fell out.
I felt my child was humliated, degraded and broken spirted, i know i certainly was...so i kicked off, any of you who know me well, know that is not my style, i kicked off so bad they called for a physicatric consult...i scared the shit out of Billy which wasnt hard cos the stuff was falling out anyway.
Next day came as did my phys consult, i just brazened the thing out, i told her i am just normal, i am reacting to my child being put through a gruelling process and he is just getting worse, so i shouted, i coloured the air a little blue with ill laungauge, i may have told the doctors to fuck off, i may have insinuated he was a prick who knew fuck all, i may have kicked a few things on my way out of the door (couldnt slam any doors because they all had those bloody safety features on!!) but i am just a normal human being, anyway she agreed and sorted a team meeting to get plans laid...more like to keep me quiet.
So the team meeting rolled on, our consultant there, this is how i will describe him, you know the kid at school, wasnt blessed in the looks department, glasses, weighes 7 stone wet, is sooo clever and never fit in to any group well thats him. only he has found his niche in life...i feel truly sorry for any of the poor bastards who come under his care who bullied him at school!!!
So he tells us the plan, underlying in all he says is if they can not get Billy to settle down with any feed they will send us back to our local hospital and well there wasnt an and. He explains to us there will be no more tests, Ah at last some positive news, we wrap the meeting up, the chairs have not even cooled down from our arses being on them and he is ordering a contrast CT scan....what...you said no tests...my dummy quite firmly fell back out of the pram at this point!
Anyway this is a turning point that we have to thank and have thanked the consultant for, they found a blood clot on the scan, i was in Stoke taking care of Jack when Chris called with the news, in my mind i was like yeah it will be fine blast it with drugs happens all the time on Casualty...that was Mondays call followed by a sleepless night...then came Tuesdays call...the doctors had reviewed the scan and decieded it the clot was to big and it was to dangerous to hit with drugs, sooo, open heart surgery it is then, roll on sobbing!!!
I text my boss who called me right back, again a sobbing and snorting conversation was in play, she was great, dont think she got most of what i was saying though.
Jack and i caught the train down that afternoon, poor Jack was mortifed his mum was openly sobbing on the train, but i couldnt bloody stop, this was serious shit, my stomach was lurching all over, the only way i can describle it is you know when you did something so wrong as a kid and you knew you was for the high jump when you got in well that was it.
I had felt bad having to explain to Jack once already that Billys condition is life threatening, but to put in to the mix open heart surgery just made me feel so sad at crushing his innocence so early in life, but i have never wanted in all of this journey for Jack to feel he wasnt part of it all.
Getting to the hospital i tried so hard to keep my tears locked away in front of Billy. He was so sick, he just didnt really move much at all, i just laid with him, taking in every bit of his face and his beautiful blue eyes that were hidden by facial ascities.
Sleep would not come that night, well it did in dribs and drabs but i kept waking myself with crying.
The day of surgery came, Grace who had been a nurse who looked after us during our time on that ward stuck to us like glue that morning, she made sure the cardiac liason nurse got to us first thing, our surgeon got to us and explained everything.
Now when i tell you this and if you dont believe in God this might sway you a bit... when Chris and I looked at training for TPN feeding we had planned to go to Sheffield Childrens hospital, why? Well my friends and family are all that way so support would be on hand, however on talking to our local consultant she explained that our local funding for TPN at home matched better with Birminghams and it was easier to access, so Brum it was.
In BCH they have one of countrys top cardiac units for kids and one of Europes top cardiac kids surgeon...the lovely Mr Brawn, if we had gone to Sheffield would we have had the nosy gastro consultant who ordered the CT scan, we know the cardiac unit is not as good and Mr Brawn does not work there...so the guiding hand of God, well i like to think so.
Wednesday 3rd August 2011, everything people are saying to me is going over my head, im scared, my head is so loud i wonder if people can hear it, every time Billy has gone into surgery i can not get into the anesthetic room, i start crying so Chris does the honors so i dont upset Billy. But on this day i go in, tears in my eyes but holding them in kinda! We are accompanied by 3 nurses from the ward, all trying to be jolly, but they know we are completely devestated by what is happening, the bit i should add to this is Billy has ascities, this is fluid that empties in to any space in the body it can find, so to open the body up via knife allows an instant release of pressue which can send the venous system and organs in to failure within minutes. We dont expect him off the table.
Now heres the bizarre bit, after they put him to sleep and we go out of the room i feel strangely calm, like i was dropping him off at school, i even go and eat dinner something i have never been able to do, had i resided myself to the fact he may die, i dont know, was God watching over us and calming us?? Again i like to think so.
We left Billy at 2pm and dont get a call until 6.30pm, we catch up with him in intensive care, anyone who has been in ICU knows it is bloody intense, we spend some time talking to him and the nurses geting the run down of all the machines and what the surgeon found, he found a clot 5cm (length) by 1cm (width) in his vena cava (main heart & lung artery) which tailed off all the way in to his right jugular vein and they also found his heart sac had thickened so they cut part of that away, they drained 1400ml of fluid out of his body cavity in the op to. There are just so many wires and drugs! We make our minds up that the best thing to do is get some sleep and again rather bizarrly i sleep.
We arrive at ICU the next day to find people running past us with buckets of crushed ice, we dont pay any attention until we get to Billy, its all for him, his is spiking a temp, he is wrapped in a cooling sheet and his head is being wrapped in ice packs...bloody fuck, fuck, fuck, I can see Chris is terrified and im not far behind him, but our plan for the day had been to read to Billy even though he was sedated and was being given a muscle relaxant as his chest bone was still open so he wasnt allowed to move. The doctor tells us what they think is happening, Billy had to go on bypass in surgery and when the blood goes through the bypass machine as the blood re-enters the body the body knows it has been else where and thinks there is a infection invading the body and starts the fight process. They have to cool him fast so he doesnt suffer brain damage. His outer body temp is held at 27oC and his core is held around 34oC, we start to read to him, despite being sedated everytime he hears our voices his blood pressure raises...i am chuffed to pieces, my baby knows i there...until it is all crushed by a nurse who must be the doom and gloom master, she informs me Billy may just be having a seizure but they wouldnt know as he is so heavily sedated...i have many powers as a mum but talking to my child does not make them have seizures...bloody mare!!!
OMG!!! i have just re read this blog and looked at the time, im going to stop here and carry on another day, i thought i would just let some of my Ggggrrrs go in this blog as i have had a tough day...seems theres a few in my head.
TO BE CONTINUED........
Thursday, 28 July 2011
Are we there yet?
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
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
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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