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
