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........
