Learning to fly

Moved blog house

2010-03-31T23:41:00.002+01:00

I had shut this blog down because around the time I last blogged things became very bad and the big lad was very lucky to be making it through each day he really wasn't looking like he would ever make it home but as ever he's still going strong, same problems but keeps on going. Anyway I had deleted this blog and thought it was gone for ever ...but look one click of a button and it's here :o) I have started a new blog as I thought this one was gone for good so if you want to read my waffle then click on this link here. Thanks everyone who reads my nonsense and your welcome to join me in my new blog.

Inside out

2009-11-09T23:49:00.002Z

Not something you see every day, this is big lads heap of knackerd mush that he likes to call lungs. They are a mess at the best of times but are not very well right now :o(

Where we live

2009-10-04T16:24:00.004+01:00

Well I thought you might like to see exactly where me and biglad spend half our lives as I normally only post sickly pics of him while he's in.

This is our little world :o) we always have the same room with it's own loo and shower which is nice because there are only two rooms on the ward like it and if we ever turn up and theres someone in it they normaly get moved lol with it orange walls and green plastic chairs what more could anyone ask for !!!!

And again!

2009-09-30T23:09:00.001+01:00

Well here we go again! The school nurse had called earlier to say his breathing was a little funny and they thought because they let him play out at lunch time for 20 mins they had let him over do it but by the time he got home he really didn't look right at all and was straggling to keep his oxygen levels up no matter how much oxygen I kept pumping in to him, so back to our second home we go.

His chest xray is apparently the worst of this year although he is more alert than he normaly is when things are bad. He is back on IV's but his port isn't playing the game again so he's back with a canula after a blood bath session to get it into him, lets hope it lasts a good while.

Life without hate

2009-09-28T13:55:00.005+01:00

Wouldn't the world be a better place without hate.
Had some really lovely comments about big lad over the last few weeks about what a well behaved, well mannered and inspirational person he is and is becoming more so each day and unlike a lot of things that i think people are just being nice with no meaning just because they don't know what to say these coments have really been ment and I can see for myself what a great person he has become. Mentaly he is around 18 months old but his ability to be there for people is greater than most people will learn in a whole lifetime, his world is full of love he has no hate in his life or within him, yes he dislikes things but holds no grudges and to him every day is a new one to try new things, meet new people and enjoy life because although he remembers yesterday it has already gone and there is no space in now for yesterdays. I think I need to learn more from him because I have begun to understand over this last year that holding on to yesterday is the main thing that stops you living today!

school time, help!!

2009-09-09T22:32:00.006+01:00

Looking for something to help Miss K with her school work as she is getting really behind now due to her hearing loss and found BBC Bitesize which looks good and has loads of games to help them learn. I think Miss K might need more help than I had thought though because at 7 (just last week birthday pics soon!)I have to say she hasn't a hope in hell of doing some of them, there key stage 2 am I right thinking year 3 is key stage 2 ???

The portacath lives another day!

2009-09-05T22:59:00.000+01:00

His port is still working but we don't know for how long, while it's still being used it keeps getting a mini block were it feels like it won't work and then with a kind of pop it starts and works fine again. The thought is that it has grown some tissue in there somewhere and it is sealing off the tube but while we use it several times a day it's not able to build up to much the problems will come when his iv's stop on the 14th Sept and all being well his port will not be needed for 4 weeks. It's highly likely that we will flush it out sooner to try and keep his line going but who knows if it will work...watch this space!

Not all fixed!!

2009-09-01T00:08:00.001+01:00

It would seem there is a bigger problem to it :o(

All fixed

2009-08-29T20:21:00.003+01:00

you really wouldn't believe the carry on we had to sort out the port but that was due more to the fact our local ward is full of fresh out of uni very nervous Dr's than anything else, in the end after hours of no one having the guts to do anything our gastrostomy nurse happened to be passing (again) and asked if they had managed to clear his clot, she is a fantastic, confident and very experienced nurse and offered to see what she could do...within 2 minuets the port was up and running again with huge sighs of relief all round it's still feeling a bit stiff so maybe still a little buildup of clotted blood in there but it should dissolve over the next few days as it gets plenty of heparin flushed through. Unfortunately for some strange reason the needle had come out of his port this morning, it shouldn't happen as they are called gripper needles for a reason! It's the second time in 24 hours as well :os so another trip to the hospital today (I draw the line at putting them in they are big, slightly hooked evil looking things) for another needle so biglad really wasn't happy at the 4th needle in 48 hours going into the exact same spot that is now looking really sore, so we now hope this one stays put for the next 2 1/2 weeks while we get his meds into him. It's a day late but now can we please start our bank holiday weekend?

Well !!!

2009-08-27T22:06:00.005+01:00

I was going to post about the fridge freezer giving up on us and how I really should have known better than to have it completely crammed with a couple of hundred quids worth of food cos the whole lot has had to go in the bin

but biglad has outdone that one.

Because he is so unwell he needs a lot of antibiotics injected into his system and has a portacath fitted in his chest as his veins were so badly over used they had all collapsed. The port is under his skin and has a tube that runs up his neck, into a main vein and into his heart it all works well and there is no need to go digging round his arms with a needle. Today when his antibiotics were put in the port .... nothing... it wouldn't budge at all, he had the needle changed incase it was that but no, he had it changed again incase they had missed his port...still nothing then an xray to check the needle is in the right spot, yep it's there. Answer to it all is he has a blood clot in the tube that is going to his heart :os so tomorrow morning he is back off to hospital to have some vert strong anti clotting yuk forced into the line to try and dissolve the clot then tomorrow night they will try to draw toxic gunk back out and we cross our finger and hope it's worked ....... what if it doesn't work? well that means another two nasty operations that his lungs will struggle to deal with and leaving my beautiful little man covered in even more big ugly scars on his body!!! Fingers tightly crossed xxx

Having a meltdown

2009-08-27T13:30:00.003+01:00

As much as I feel like it might be me on meltdown it's not it's my fridgefreezer that decided to give up on us while I was in hospital with biglad for the night I guess the lesson from it is not to keep so much food all at once. The freezer was cramed and probably had a couple of hundred pounds worth of food in easily all of which has been dumped into 3 big binliners and filled my wheelie bin :os I did save a couple of bits that we can have tonight or tomorrow but I couldn't really save the rest. I'm just greatful that I keep biglads chilled meds in a seperate fridge because we have about £4500 worth in there and I don't think the Dr's would be to happy with us :op oh well on to the next disaster!

If you go down to the woods today..

2009-08-23T21:47:00.004+01:00

You might have just spotted Miss K flying round hunting down yummy treats. Yep that time of year again when there's free food everywhere, it's exciting stuff if your a kid, that's about the only photo I got of her because she kept spotting more and was off again.

We did well for hazelnuts this year and yes they are perfectly edible now before they go brown in fact if you wait for them to go brown chances are someone else will nab the lot first and the squirrels will have took whats left. Have put some on low in the oven to dry a bit because although the flavour is the same they are quiet wet tasting before they go brown which is fine but thought I would do some as I had the oven on.

We also got some (3) apples which isn't enough for anything really but strangely kids don't like walking for miles to get to the best trees! So as apples were a let down we went for the blackberries instead and although on the early side for picking around here we still got a good stash although Miss K did eat half on the way round :os

As for the blackberries well I need a few more apples for crumbles and pies and I refuse to do more jam as we still never got through all I made last year so I'm having a go at something new... fruit leather, basically dried fruit puree so I have cooked them blended them and now to dry it out..this could take some time!!! I will try to remember to post what we thought of it and I'm hoping the kids will like it as I'm thinking it's a good way of getting extra fruit into them while they think there getting sweety type treats ;o)

This time last week...

2009-08-21T21:59:00.001+01:00

We were snuggled up cosy in our tent. Me, Big lad and Miss K had gone camping with 40something other familys who all have special kids.

Have to say after the first day we didn't see or do much because Big lad wasn't to well but what we could hear from our tent sounded fun and Miss K had a great time joining in and having some freedom while mum was otherwise a bit stuck.

Normal service resumes

2009-08-21T20:37:00.011+01:00

life has had it's normal (well our normal) up's and downs the last few months and right now we are sitting at the not well but looks fine stage so we will bury our heads and keep on going. To much to write and not enough time so here are a few photos to cover bits of it...

Been AWOL

2009-08-20T17:24:00.002+01:00

http://www.youtube.com/watch?v=wRI8s5pYllU&feature=related

listen to some music while I'm gone !!!

:op

From then till now

2009-04-19T23:26:00.003+01:00

OK so nothing goes to plan, the op didn't exactly go to plan and nothing in between has gone to plan.very not to plan

But you know tomorrow is another day, I have no idea what it will bring but I will stay ever hopeful. x

If I think hard enough

2009-04-05T23:12:00.001+01:00

Will it come true...

the op will go to plan
the op will go to plan
the op will go to plan
the op will go to plan
the op will go to plan................

please, please, please cos I can't take much more crap

My psychic powers amaze me!!!

2009-04-02T21:14:00.005+01:00

LOL
Well guess where he ended up......oh oh go on give it a try........yeah back in hospital. After huge amounts of green gunk appearing from his lungs I thought it best to take him back, 4 days later back on the blood bleach of iv antibiotics and we have escaped again still with loads of green gunk and a mission to get rid of as much as we can by Monday when he goes back for his op, it would appear he can be as ill as he likes and the op will still be going ahead.
They have also had a play with epilepsy meds while he's been in and how on earth he is still able to spend any time awake with that lot inside him i don't know never mind the fact he's still fitting.

OK so I'm a bad mummy, he's in with a bad chest, asleep and not on his o2 but he fell asleep on my bed at the other side of the room too the o2 and had begged so nice for 'no peggy' (no oxygen) that i couldn't disturb him to put it on.

Well I'm off to try and finish the decorating i started last week and hopefully tomorrow make peace with one of his medical team that is fantastic and I hurt today while trying to get on top of other problems. x

ps. just noticed how disgusting that hospital pillow looks YUCK!

WOW!

2009-03-27T12:53:00.004Z

Well he did perk up a lot when he saw the trike turn up and OMG did he love it. We have tried him with an adapted bike and different trike in the past, the bike was to unstable and he couldn't get either of them to move an inch. We had heard that we should give Tomcat trikes a go and although we have had to wait a while to get someone to bring one and show us as they aren't as big as other companies, Bob the MD turned up today as promised and WOW what a cool trike, really, really well thought about and so much easier as a mummy to use than the others and best of all the one thing I never thought would happen HE CAN PEDDLE ON HIS OWN!!!! I was so gob smacked I didn't remember the camera in my pocket (stupid mummy) but did take a pic on my phone

OK so it was pink but he didn't mind, I just can't believe my big lad should be able to learn to ride a trike.

Now all I need is a few ££££ to buy one......off to sell my self on eBay.....should get 50p towards it.

FOR A CHANGE TODAY IS A HAPPY DAY!

17:30ish.... Well I thought I would update as yes it was to good to be true to have a good day with no problems. At tea time I picked the other kids up from school and trundled off to grandma's where the other 2 got the box of toy/junk out and big lad promptly shoved a tiny bead in his mouth...not great as he is nil by mouth for a reason. Two seconds later he had aspirated it and was coughing like mad, after about 5 mins (had his o2 and sats monitor on) and just as I was about to call out the little green men the bead decided to reappear, in a strange old way I bet it did his lungs some good by moving his mucus around but I will put the goldfish's life on it that he will have just added another bug to the collection he's got going on down there, his chest is going down with something anyway so it won't make a difference, he's had a whole 4 days away from the ward, he must have been missing them and trying to get back in!

They weren't wrong were they...

2009-03-26T19:15:00.002Z

when they said life is a roller coaster. Talk about up and down.
As far as we know big lad still has c. diff, well put it this way whats going in is still coming out just as fast and twice as messy. According to the labs at our local hospital you can not re test for 28 days to get a true result and the only confirmation that its gone is when all is back to normal... hmmm well it hasn't gone back to normal and he's now finished his coarse of metronidozol and now we have another problem, all the antibiotics he takes all the time to keep his chest clear had to stop as thats what is allowing the c.diff to run riot so no prizes for guessing that now his chest has started up again, his oxygen levels have been slowly dropping today and the familiar rattle is back on his chest. Now as much as I know that his chest is very fragile and it shouldn't be left to build I really don't know what to do as I know if he starts anti b's again for it the c.diff will take over in a big way again...... the answer is take him back to the ward and I'm sure that is what will end up happening but I'm so tired, have so much to do and we really do spend half our life stuck in that ward I just wish we could run away and hide from it all !! all I want is just a small slice of normal... He actually has another operation booked for just over a weeks time, I really can't see it happening but will wait and see. we also have a few days away to relax and escape it all booked for just after but that is also looking doubtful. oh and while I'm on a moan his seizures are still going potty and his paed and neuro are in complete disagreement over what to do about it but while they spend an age arguing they seem to have forgot that a little boy is in the middle of it feeling like crap.
On a good note he is supposed to be trying a trike out tomorrow so I'm hoping he perks up a bit for it as we have waited a couple of months to get someone to come out, really hope it suits him as he loves being outside and feels the need for speed, as this trike can be hooked onto my bike and pulled along I'm sure he will love it. Am charging the camera up as I write in the hope I can get some photos of him and have a happy post tomorrow for a change :o)

wish it wasn't my turn!

2009-03-19T21:14:00.005Z

When will we get a break from it all, not got much to say really as I'm just so worn down but the big lad now has C.diff he really isn't well and hasn't responded as well as we hoped to the Metronidazole but he is starting to look a little better and his tummy isn't so bloated so good signs

Please keep fingers and toes crossed that he is soon fully over it and we can have a break from all the bad bits.

Good night and God bless

2009-03-07T11:22:00.001Z

To my sister in laws dad who passed away last night.
RIP Dave :o(

A life! No of coarse I don't have one..

2009-03-04T23:25:00.003Z

Well like I said his op didn't go to plan but can't give to much detail, the summery is there is something left in his stomach that won't be able to get out on it's own so soon he is to have another op to remove it and redo the op he's just had, I am glad it's getting done but yet another anaesthetic is something he could do without as his lungs are really suffering, it also means yet another hospital stay and coarse of iv's.

Other news for the big lad he went to see an orthopaedic surgeon who specializes in hands and it wasn't good. He measured all the different angles of the wrist and arm result being all are very reduced and wrist supination (the movement to turn hands palm up) no longer exists. After lots of playing around and huge amounts of x rays they think it is a problem with his elbow but at the moment can't confirm it as he needs an mri scan which for other long winded reasons he can't have either way the end result appears to be the operation will be to big for him to go through, he will never regain the movement and will probably lose more :o(

And as if that wasn't enough of the bad news we also got the results of his eeg to see how his epilepsy is doing and it confirmed that all the twitches, head retractions and other bits n bobs that we thought were seizures are and he's at it all day every day. His anti epileptics have been put up by huge amounts and we are waiting for his neuro to let us know if we have to start another new one.

If you are wondering what the title is for, well according to big lads main Dr I don't take him to hospital enough when he is ill..........can I just say so far this year he (we) have stayed 21 day's in hospital non of that includes outpatient appointment's which have been a minimum of 2 each week or home visits also minimum of 2 each week and I have a hubby who works full time to keep the bills paid and another 2 kids to look after...........

Just to say..

2009-02-21T17:36:00.002Z

We have had a really bad week with everything at hospital going really badly wrong but I don't think I should be writing it all on here...

So things can only get better, right!

Not a good look!

2009-02-13T22:11:00.004Z

Big lad not having the best of day's he's back on his IV's which is the wiggly going into his chest then this morning his feeding tube going into his belly split and is leaking his feed as fast as it goes in so he has had to have an ng tube put in which is the yellow feeding tube up his nose and is distressing him so much and weather it's due to the stress or physicly being there his oxygen levels ar struggling since the ng went in so he's needing more oxygen :o( last night he had had blood took to check his drug levels but because he is having so many anti clotting drugs while his wiggly is being used he spent nearly 3 hours dripping blood all over as it wouldn't stop bleeding only to find out today the blood was put in the wrong bottles and he needed it doing again! oh and his dribbling is in overdrive so he is gagging and asperating constantly as well as soaking him self and everything else in dribble...............one day I will have some good news to post on here but I have no idea when that will be!

Oh and for those that know about pegs yes it is brown and yes it was a normal clear one when it went in but after almost 5 years and with a gastro that doesn't give a damb thats what happens

2009-02-11T23:24:00.003Z

I WANT MY BOY TO BE WELL AGAIN :o(

just haveing a virtual scream as i'm worn out, I can deal with him being disabled but seeing him ill all the time is getting to much I could count in weeks not months the times he has been well in his life but now it seems out of control.

I keep putting off but I must ring the hospice and book us a break!!

Definitely one of those day's

2009-02-04T19:48:00.004Z

Big lad had his gripper needle took out of his port so his chest is now looking 'normal' but he has been left on a high dose oral antibiotic as he is still full of gunk and he is due yet another general anesthetic in about 11days so after a chat with his chest team this afternoon he is now going to stay on the high dose oral for another 6 days then back to iv's. The antibiotics are reeking havoc with his stomach and bottom and to be honest I'm fed up of making up and giving his iv's, it's very time consuming and I'm tiered of getting up and kicking my brain into gear at stupid o'clock but the alternative is to stay in hospital while he has the 14 days worth of iv's which is impossible to keep doing with another two kids and a hubby who works full time....more moan, moan, moan

This is big lads scars almost two weeks on, his port is not protruding anything like they said it would in fact you can barely tell it's there - you can just about see a little pink dot to the left of his chest scar that's were the needle was and the port is under it. All very neat apart from they have pucked up the scar on his neck so it's taking longer to heal and will probably stay more noticeable.

Fingers crossed for no crapyness tomorrow :o)

Moan number 2 for today

2009-02-04T13:59:00.003Z

Our little man uses oxygen mainly over night when he is dependent on it and at times through the day like naps or if he is ill not a problem if he's at home as we have a huge machine that produces oxygen and a huge oxygen cylinder as a back up if the electric goes off. If we go on holiday we need to book with the oxygen company at least a month ahead so they can deliver the same set up to the place we are staying now here comes the problem we are a young family with three kids under eight and life is not always planned a month ahead sometimes emergency's come up, sometimes we like to go visit people or just go for a few nights away camping or as a last minuet break but the oxygen company are refusing to give us portable oxygen for us to go there reason 'people on oxygen don't go camping' oh really you ignorant ****s if we want to go we are expected to take the huge machine, equally huge back up cylinder as well as suction equip, feeding equip, wheelchair etc etc and that's just for him before you get the other two in and all the general stuff you take with you. They have now had 5 HOOF request forms for the portable oxygen and have today asked our Dr to send another HOOF form instead they have received a nice official complaint for from her instead :o) It's not difficult all we need is a liquid oxygen tank and the portable refillable one that goes with it we would then be able to get away for the odd night without having to book it weeks ahead via half the nhs it would also solve the problem of me having to trudge a small cylinder back and forwards to the hospital all the time to have it refilled for day time use......it's one of those days

soooo cold

2009-02-04T12:13:00.003Z

I was going to put some nice warm summer pics from last year on here to cheer me up and make me feel all snuggly and cosy but after looking through all last years photos I noticed we didn't actually have any sun at all last year so heres our snowman instead...

The snow didn't hang around long enough for the big two getting home from school so didn't get out to have fun or take photos :o( now just freezing cold with no snow and loads of jobs that I can't drag myself up to do...............moan, moan, moan.....

I need sleep

2009-01-29T22:17:00.003Z

As I thought the big man ended up back in hospital and as I would of predicted because it was a weekend and as non of his consultants were about they had no idea what to do with him, it's a problem with kids with complex needs they have so many problems and so many Dr's involved that it intimidates Dr's that don't know them well and leaves them frightened to do anything in case it's the wrong thing. Anyway after he was seen by his own teem he's back on antibiotics and a very intensive chest physio routine he's also been needing suctioning this week but I'm glad to say he has improved enough that he's dealing with it himself today which is a huge thing for him as he's terrified of having it done. His port site is also looking good and he's had the dressings taken off today much to the disgust of his sister who keeps gagging at the sight of the rather messy scars lol the swelling on his chest is also going down now and his port is more visible but not looking as bad as people thought it would with him being a tad skinny only problem to sort with it now is he can't wear his chest harness with his port and he's not aloud on the school bus without his chest harness so mummy's back to getting 3 kids to 3 different places all at the same time not easy, lets see how long they can drag there feet in sorting it out...

2009-01-24T21:56:00.003Z

Well it's all done, when we got there he was moved to last on the operating list but we expected that as his lungs are colonised with Pseudomonas so he is always put last to prevent any chance of it being passed to others we also found out why he was booked into the baby ward, because our little man has had a positive result for CF he needs to be kept in a single cubical to lower the risk of him getting other infections and that had been the only space they had, by the time we got there they had found one on a different ward. Because the op was put in as an emergency they couldn't do the other bits that were planned so he would go for his portacath which would take about an hour. I took him into theater where my poor terrified boy was pinned down and given gas to get him off to sleep and I went back to his room and wait after an hour a nurse came in and I thought it was all over but it was only to say theater had rang to see if I agreed to extra unplanned painkillers which had me worried but they wouldn't say more, another hour passed and even me one of the most laid back mummy's you could meet was starting to get in a panic. Two and a half hours after the op started the surgeon walked into the room not normally a good sign as a nurse would normally come and take you to recovery, It hadn't gone quiet to plan they couldn't get into a vein in his chest and had tried for over an hour leaving his chest very swollen and sore they then had to open up his neck and pass the tube part of the portacath from his chest up his neck and into a vein there before it goes to his heart. A short while later and I went to collect him, he had no pain due to the amount of painkillers but was needing a lot more oxygen than normal. By lunch time the next day his new port was tested and was working well and the operation sites were looking good he was now having quiet a few seizures and his chest was sounding quiet rough but as what he had been taken in for was now done and working he was discharged.
The photos probably not big enough to see but you can tell he's been fitting as he always has straight eyes but with a lot of seizures one of his eyes rolls out to the side..

Since getting him home he's been having seizures most of the time and his chest is getting worse, at the moment he is in bed hooked up to his sat's (oxygen) monitor and we are watching him on his night camera. He's needing more oxygen than normal and we are crossing our fingers that it's all just an after effect the anesthetic and he can sleep it off otherwise we will be heading back to our local ward tomorrow :o(

Nervous!!!!

2009-01-22T12:02:00.004Z

Just had a call from the RVI in Newcastle they have a place in theater for my big, little man in the morning to have a portacath fitted and I'm now officially terrified. It should be an easy op that will take about a hour although he's having a few other bits and bobs done in theater before the main op so altogether he'll be there for around two hours. Like I said it should be easy but it does have rather a lot of risks and more for him as the end of the portacath sits at the top of the heart where his heart defect is and he's already had surgery on his heart in the past, on top of that he has very week lungs with a lot of damage to them and already uses oxygen with one of than main risks of the portacath being punctured lungs you can see why I'm only managing to write nervous waffle!

Nothing more I can say but keep your fingers crossed and if all is OK they said we should escape after the weekend. Going off to pack bags and chew my nails down to my wrists now!

Edit at 14:50 - Add confused to my list of feelings as I have just had an email with the details and he is being admitted to a HDU for babies for 0 - 2 years of age..... he's almost 8 and carrying some very nasty bugs with him. you've got to love the NHS!

No idea's for a title!

2009-01-18T22:30:00.015Z

Have visited the grand parents this weekend and they promptly put the kids to work...

I have no idea what he's dressed in or why he's tied up with a tea towel but he did a good job all the same. Do you know looking at these pics you would think he is a really happy smiley kid but ooooh no! he turns it on for the camera and is truely one of the most grumpy kids you could ever meet

We've had a quiet weekend trying to get the big ones bedroom sorted we've ordered his carpet, almost finished the painting and fitted all of his new monitors and bits n bobs.

Really need to say congratulations to B who because of a very special gift this weekend got a new liver. I'm so glad to hear your doing so well and even major surgery hasn't stopped you playing on your DS :o)

still angry!

2009-01-16T22:13:00.004Z

I should really have calmed down by now but I just can't, those points are only a couple of the things this person has failed to do and I feel so let down for my son, OK so I have found out other things which I really can't post here that has made me more annoyed with her but AAAAAHHHHH!

Ranting!!

2009-01-16T14:38:00.007Z

Hey it's my space I can moan all I want. I'm soooo angry with my sons physio and need to get it off my chest before I lose the plot. why does the woman not listen or do her job? 18 months ago I told her my son was losing movement in his hands and could she take a look..of coarse she would! only six months later she still hadn't I nagged his paed about getting a new physio but she is the one attatched to his school and it's not the done thing but as she could see a problem she would question the physio and she did but another six months passed all the time his hand function becoming worse. A year after first asking her we had arranged a meeting with all of his Dr's and health care workers and amazingly because she didn't want to look like a fool she had a look all to late, his hand function has now almost gone, he is now seeing a surgeaon but the problem is to advanced had he had the right physio he would have kept a lot more use of his hands but now nothing can be done to bring it back.
so come to last november and I notice his feet are turning more than ever and he has started walking on his toes again. now after what had happend with his hands you would think when I asked her to take a look she would but here we are the middle of Jan and still not botherd to look, his doctors are asking me what we are doing to help him and all I can say is we are still waiting for the physio to take a look. He is now walking on his toe almost full time, cant walk with streight legs and is constantly stooped over..... WHY OH WHY are these people aloud to abuse there positions so much, why is acceptable to let a disabled child deteariate so much that it causes pain and will leave him with even more physical disabilitys for the rest of his life. If I abused my position as his mother in the same way he would be taken into care, why are even the people who are supposed to be there to help him treating him as second class, not worth the effort of trying to help him just live the best life he can.
I was promised she would look at him this week but it's now friday and as I called into school to do his medication I asked if she had seen him yet only to be told she isn't even working today....
What can you do? these are the people who you are told to trust with his care and short of winning the lotto there seems very little else we can do...

The list

2009-01-14T23:04:00.006Z

To worn out to bother writing anything properly today so todays list of jobs -

high speed get up and ready
kids breakfasts
chest physio
tube feed
get one ready and off to school
tube meds
get one ready and off to play group
IV meds
get last one ready and attempt to go to hospital to find all car doors frozen shut
defrost car and go to hospital
appointment with chest physio
appointment with resp Dr
collect supplies from comunity nurses
quick drink then appointment with specialist nurses
go home
genral physio
sort feed bag, school bag and meds
get final child to school
get home feed dog
make bread and muffins for lunches
get changed and do some decorating
changed again and go to school to do IV's, notice cannula is tracking up arm
go home ring ward to let them know we will see them later
arrange someone to look after little one
walk dog
do washing up (ok load the dish washer)
put load in washer
a visit from building inspector to sign off the new room
wait for big lad to come home on the bus
get child, wheelchair, feeding stuff, infusion stuff and o2 into car
go collect child No. 2
realise it would be best if child No.2 didn't come to hospital so ring around to see who can have her
drop child No.2 off
go to hospital again
wait an hour and a half...........dum dee dum I have other stuff to do you know
wrestle child while he gets new cannula
notice old cannula site which has been tucked between us has bled like mad soaking new top
go collect child No.2
go collect child No.3
go home make tea and eat for the first time today
do chest physio
IV infusion
tube feed
tube meds
home work
get 2 and 3 ready for bed
do milk and biccey's
No.1 ready for bed
Throw all kids in bed
tidy up
sort school clothes for tomorow
shove washing in drier and wash another load
think about doing DLA forms but don't bother
come on here for a quick look
do IV's AGAIN does this never end!!
go to bed so I can start all over again tomorow

Busy doing nothing

2009-01-13T21:19:00.004Z

Life seems to be so hectic at the moment but it's that kind doing everything but getting nothing done. Have been running back and forwards to the hospital for appointments and cannula changes, all hope of using less petrol and walking more has gone out of the window as has cooking more because there just hasn't been any time and things don't look like there getting any quieter. we are waiting for the appointment for the portacath and they plan to change his feeding tube at the same time also more testing into his lung conditions, he needs castings and diferent types of splints as his feet and hamstrings are getting worse by the day then yesterday his neuro told us he wants to completely change the epilesy meds our son is on after he has got over the pain of his portacath and it will make the seizures worse before it makes them better so thats probably the next 6 months booked up and they have all been arranged so far this year and oh look we are only on the 13th of Jan.

Well tomorow is another day with another appointment but my goal is to try and finish decorating in the big lads new bedroom we had built at the end of last year so we can get the carpet ordered and he can finaly move into it.

So far we have got from this

To this although all the builders rubbish and the wood at the window has gone now :o)

I hope to have all the walls, doors and whathaveyou done by the weekend.

You can never plan it can you!

2009-01-09T11:24:00.004Z

Life that is.

We went to get our little mans EEG took off, he'd had loads of seizures while it was on which isn't a good sign of other things with him, his chest is sounding grotty and he can't stop drooling so it was off to the other hospital for him - have to add incase you think i'm nuts for taking him to hospital he does have chronic lung disease, other lung problems and uses oxygen - we are now at the point where he goes onto IV antibiotics even if they suspect a chest infection so we end up with the nasty task of trying to get a line in him so we can give his iv's. Unfortunatly he has had so many in the past he has no veins left to use, and due to normal cannula's not lasting very long he has to have long lines put in instead.

This is a bad pic of his last long line its inserted into the arm and a very fine tube is pushed through the vein until it reaches a large vein in the neck that and these lines can (if your lucky) last for a few weeks. Well he was given as much sedative as they could but he knew what was comming and it didn't work they still had 5 attempts to get a line in but just couldn't get a vein and although he was on the list to have a perminant line put in he's now been put on the urgent list. So in amongst all the other things that need to be done we now have to give his injections and infusions for the next 2 weeks while we wait for a call to take him in for the portacath put in.

Oh I need a break from this lot!

24 Hour EEG's

2009-01-06T14:08:00.005Z

Well thats what we are upto today, for those not in the know it's a test for epilepsy, it can be used to diagnose epilepsy or for those known to have it like our little man they can check to see how well controlled it is. A normal EEG lasts 20 mins but if they are looking for something in particular they do them longer.

Well today is the little fella's 5th 24 hour EEG in 12 months and I'm stomping my feet and saying it's the last one, after getting bad news on another of his medical problems yesterday we went to do battle with this and battle it was, an hour and a half to super glue 25 electrodes onto his head, his face is bashed and bruised from him physical having to be held still and now we are on 24 hour watch for any activity which is hard in it's self....for now though he's asleep so thats what goes in the notes and I can stop the watching until he wakes. So thats today, nothing else gets done because you can't and I can't wait for 10am tomorow for it all to come back off even if it will leave him with a head full of 'bird poo' super glue for a few weeks :o)

mmmmmm....

2009-01-04T06:01:00.002Z

The foody bit, we have set our food budget at £50 a week for the 5 of us (4 really as our son is tube fed so doesn't have 'real' food) I can't see it being a problem sticking to it until the lazy streak in me takes over again. Today I made a start on the foody bit by having a clear out of the freezer, you know you should really stop buying more food when you have no space but no idea whats in your freezer, well I think we could live off food out of the freezer for the next month and now need to find some time to sit down and meal plan.
Planning ahead and it's back to school tomorow for one of our littlies (another's at hospital and the other hasn't started preschool yet) so need to get sorted for her packed lunch. she's always had packed lunch but it's to easy to go and buy all the little packets of bits and bobs to throw in her lunch box but it's not in keeping with our budget or attempts to be frugal so today I did a bit of baking.
I've been making our own bread for the last few weeks which is so easy to do and has gone down really well with the kids, today I've also made some choc muffins to add the junk factor to the lunch box but have now got a new problem... how to stop everyone eating them all before they reach the lunch box!

It's soooooo cold

2009-01-03T02:45:00.000Z

Saturday, well a normal saturday would see us spend nearly all day at the shops spending how ever much we wanted but thats ended. We did go shopping but just to get bits of food and only spent £23 which I even impressed my self with.

Although we have so many jobs to do in the house a couple of days into the new year didn't seem the time to be doing them after all we are still on Christmas break for another couple of days.

Instead of housework or spending we decided some exercise would be a better idea and new year is always a good time to make an effort to get fitter. All a good idea apart from it being -1 outside we set off for a short half hour walk ..... 2 1/2 hours later after a walk to and around our local country park while freezing our butts off we got back planning where we were going next week and I have to say it's not a bad way to spend a saturday afternoon.

Wheres this come from!!

2009-01-02T04:49:00.001Z

Once upon a time we used to live a very frugal life and spent our time having fun as a family, because of that our mortgage was all but paid off and we were always at the beach, woods or park. 18 months ago we moved house as our disabled son needed more space so got a nice new big house and huge mortgage, then found the house needed more doing than we thought so spending seemed to be all we did, christmas 2007 I had a stroke (I was only 29 but stroke's aren't fussy) and although physically I was back to normal really quick it put a stop to us going out walking or taking the kids very far and once you get out of the habbit and into new ones it's hard to go back. Our new life seemed to be stuck in the house watching TV and trips out were to the shops to spend a fortune on junk food and that must have gadget that ment you would spend more time in the house, With our sons health problems and disability's it also became easier to just not bother going anywhere (either that or he was stuck in hospital yet again) as you can not just grab your keys and coat then head off out when you have the needs he has!

Well near the end of 2008 it is telling on all of us that this do nothing, spend lots life is not for us and a holiday in Dec '08 which took us back to our old life style brought that home to us with a bang, soooo now things are going to change and thats where it starts.

The plan is to start cooking more and stop buying stick it in the oven rubbish and over priced treats. To stop buying every gadget going as they only end up in cupboards anyway, the money we save and the money we make selling unused gadgets will go on making the house into what we want, getting equipment to help our son with his needs and having breaks away to make life just that bit nicer.
To spend more time at the beach, park, woods and anywhere that isn't sat on our butts doing nothing.....

Well you get the picture :o)

The start

2009-01-01T16:10:00.000Z

New Year 2009 with a resolution to be more frugal, use the car less, enjoy life more and be happy with what we have!
And this is where I'm going to waffle all about what me and my family are doing in these efforts it will be very boring for most but if you don't want to read it then the little cross at the top right of your screen should help with that

Back posting this lot will make no sense for a while untill it gets sorted out

2001-01-01T22:29:00.001Z

In 2000 like other young couples we decided it was time to buy our first home together, get married and start our own family. We bought a shell of a house that had been completely ruined by the previous owners, there was no plaster on the walls infact some of the walls were missing, the garden was a 4 foot high jungle but we thought we had all the time in the world to make the house home.
In December 2000 we found out our first baby was on the way our endless time to make the perfect home had become nine months and with us both working full time we were lucky to find time to sleep but by March the downstairs was finished and the 150 foot garden was chopped down, dug over and fenced in, we had a home. We started to prepare for our baby who we had found was going to be a son, his room was perfect, all the little clothes hung in his wardrobe and things couldn’t get better than they were.
One morning in April I woke for work and as I dressed I noticed I’d had a small bleed in the night so to be on the safe side and as he wasn’t due for another 4 months we called for the doctor who came round an hour later as I had no pain and no more bleeding I was told to take the day off and call in at his office for a check later in the day. This is where our whole world changed for ever, in the doctor’s office I was examined and as the doctor stepped back and slumped against the wall we knew all was not well. A second doctor was called in and they both stood there in disbelief, I was dilated and our son was delivering I was in labour with no pains or any feeling of anything happening, the sack of fluid which our little brave man was growing in was still intact and that was the only way he was staying alive. I was taken from that bed by ambulance to have our baby who would not live beyond delivery, taken straight to delivery suite it was thought he would arrive within the day and no attempts were being made to stop things as it was to far on for that. Our little man had other plans and after 24 hours he was still alive and had not arrived the doctor’s now thought it may be worth doing some fighting on his behalf I was injected with steroids to make his lungs mature and laid on a bed with my head near the floor and feet up in the air so he had gravity on his side. A further 24 hours passed and a second dose of steroids was given, later that day they thought he may have a slim chance of making it but if he arrived there were no intensive care cots available and we needed to be moved to another hospital, in this area we are lucky to have several intensive care units for baby’s (NICU) and the next one just 20 minuets down the road had a cot and after they gathered midwifes, paramedics and doctor’s together we set off, the journey took an hour and that’s was on blue lights but they had to drive as slow as possible because as the waters was half delivered any bumps or sudden stops could burst them and in the back of an ambulance he didn’t stand a chance. We were settled into a side room with me with my head down and feet in the air and hubby with a reclining chair which would become his bed at night on our fifth day in hospital the pains started and they had trouble getting his heartbeat, we were taken for a scan and neither of us dared to look at the screen the sonographer turned up the volume on the scanner and we both turned to look, there was his heart beating away strong as ever he wriggled and kicked like he had in his other scans it seemed so cruel that life for this perfect little baby was about to end at the very moment it started. The scan had also shown that I was now fully dilated, delivery was imminent and no more could be done to stop it or give him a better chance to survive. The next morning Saturday 28th April I woke in huge amounts of pain the midwifes came and said it would be fine nothing was happening yet and there were no contractions, as they went to leave my waters broke and I remember turning to them and crying ‘it’s to late now he’s gone’ they walked back over to me to see what I meant and when they looked under the sheet the bed was soaked and a tiny foot had emerged. Buzzers rang, lots of phoning, people running everywhere I was wheeled at high speed down the corridor past horrified expectant parents and into a room which within a minuet had filled with so many people I don’t know how they fit in there were doctors of all grades, midwifes, paediatric doctors and three people who we would come to know very well and introduced themselves as the intensive care nursing team. Within a moment of arriving in the room I had the urge to push and as equipment was still being gathered together Marek arrived into the world feet first weighing 750g, there was no sound, no cry, no talking, no congratulations.

He was born with not breathing and with no heartbeat he was a tiny little deep purple spec on a resus table with what seemed like a hundred people working on him, after 5 minuets his heart started beating and a machine was already inplace and doing all his breathing for him then as quick as he was born he was taken away to the intensive care unit. He was really struggling to hang on to life and it was 3 hours before they stopped working on him long enough that we were able to go and meet him for the first time, we had been told it maybe upsetting as he had so many tubes and wires going into him and also he would look very different from a normal newborn. We arrived at NICU very wary of what would face us and there in an incubator in a dark quiet corner was our perfect, beautiful tiny little man, his skin was so thin you could see each of his veins and his heart beating in his chest, he was covered head to toe in fluffy white hair and pocking out of his hat that was holding his ventilator in place was a mass of dark hair, his eyes were fused shut but he was perfect and we fell in love at first sight.
Over the first few days he did well and remained very stable but by the end of his first week he was struggling and the ventilation was being increased every few hours, as we went into the second week he needed changing onto a different type of ventilation as his lungs were just not able to cope, his chances of surviving were still very slim but as long as he kept fighting then we would be there by his side. Like many premature babies the duct in Marek’s heart that should have closed it self at birth was remaining open and it was thought that it may be the reason for his condition getting worse and the decision was made that he would be taken to a specialist hospital and they would operate, at two weeks old a specialist team were got together, we said good bye not knowing if we would see him again and his beautiful eyes opened for the first time then he was off to face heart surgery at two weeks old weighing only 1lb 2oz after losing some of his birth weight. The surgery involved a ½ inch cut which was across half of his tiny back from his spine to under his arm they then collapsed one of his lungs and put a clip around the duct in his heart, when it came to closing him up his skin was to thin to stitch and didn’t stretch to meet properly so he had to be glued back together. To this day and I have lived with so much since then this is the one thing that still amazes me, I have no idea which surgeon did that operation but I have the most huge amount of respect for them to be able to work on such a tiny and desperately ill baby is just mind blowing. He arrived back at the original NICU that night and other than the messy glued up cut we would never have known he had been anywhere. Unfortunately the operation didn’t have the effect they hoped for but as he battled through each day he became a little stronger. Days and weeks passed he battled through collapsed lungs, brain haemorrhages, infections, a failing gut and many other things but was still unable to breath on his own. At eight weeks old they made the first big attempt to get him off full ventilation and onto CPAP which assists with each breath he takes, this was the most fantastic day, he only managed half an hour but after eight weeks we finally got to hold him for the first time.