Sunday, 27 January 2013

On the brink of Insanity!

Last year I had two very surreal moments when I feared for my sanity! The first one happened the first week of January, 2012. After two months of hell and suffering, I had finally managed to persuade a doctor to transfer Jack out of Aberdeen Sick Children's to Edinburgh Sick Children's Hospital.

We were due to be transferred on the Thursday morning so Wednesday was a day of tying up loose ends and packing up stuff.

One of the complaints I had made was re Jack's wheelchair. I had asked a nurse the very first week we had come into the hospital if she could ask someone from wheelchair services to come and have a look at Jack in his chair, as he was getting zero support due to the deterioration of his scoliosis. Every week that went by, I asked again and was fobbed off with many excuses so no one came to see us.

The day before our transfer, 8 weeks later, a nurse came over to tell us that she had phoned wheelchair services and the first available emergency appointment was in 6 weeks time!

It was the final straw for Granny Mac, who promptly burst into tears. As soon as she started to cry, I started laughing. I don't know who was more shocked, her or me! I laughed and laughed, til tears rolled down my face, my stomach ached and I thought I was going to be sick. I looked up in the middle of this hysteria to find the very bewildered faces of Granny Mac, the nurse and Val from Chas at Home looking at me like I had totally lost the plot!

The more Granny Mac cried, the harder I laughed. Through her tears she asked in a shocked voice "why are you laughing? Stop laughing, it's not funny!" This just made me howl with laughter all the more. I was totally creased up, bent double and was laughing so hard I literally couldn't breathe. Eventually I managed to splutter "you really need to stop crying cos the more you cry the more I laugh".

Even Jack thinks it's funny!

She looked incredulous at me as if I had gone mad! Then through her tears she went on a rant about how outrageous it was that an emergency appointment could take that long. This sent me into more bouts of hysterical laughter til I was a helpless, blubbering mess hanging onto the edge of Jack's bed.

I did manage in the middle to blurt out "if I had been given that appointment when we came in, I would have had it by now!" before dissolving into fits of giggles again.

I laughed like that for well over an hour and throughout the rest of the day, I would dissolve into fits of laughter for no reason whatsoever and at some of the most inappropriate times too.

Fast forward to June, when finally Jack has had his Fundoplication after two cancellations, been on continuous feed for 18 hours a day for 7 months, suffered a broken leg and severe oesophogitis, stopped breathing numerous times, suffered 100's of seizures, aspiration pneumonia twice and the countless other things that had happened in that 9 months. He was finally back to being fed into his stomach instead of  his jejunum and I had finally started to see the end of this nightmare.

After his fundoplication

After driving 4 hours to get home from the hospital I was shattered but happy to be home. Jack was still in plaster and his feeding peg was not yet a button but things were far far better.

Marion, Jack's carer was in looking after him so that Holly and I could have our tea. At 7pm we were getting him ready for bed. We had gotten most of his meds into him but when it came to putting in the last one, the peg was blocked! After trying to unblock it, I could feel the panic rising. We tried for over an hour to no avail; it was blocked solid.

I phoned Edinburgh for advice and the nurse told me to keep trying and call her back. I was shaking, crying and inconsolable. This was catastrophic because this was not a peg I could change myself and I had visions of having to get back into the car and drive the 4 hours back to Edinburgh. I kept saying to myself "no, no, no, no, no NO!" over and over. Poor Marion and Holly didn't know what to do with me so I asked Holly to call Granny Mac because in my mind, she was the only one who would understand what a disaster this truly was.

If it had been this type of peg, it wouldn't have been a problem cos I could have changed it myself!

We tried for another half hour after she arrived to unblock the damn peg! Everything we tried to flush down it, just exploded out of the other syringe portal. Marion, Jack and I were soaked. Granny Mac was trying to help but often just got in the way.  I felt like screaming! I lurched between crying hysterically and total silence! The only saving grace was that Jack slept through it all!

I called Edinburgh again and was told to take him to our local hospital. We had to hoist him back into his wheelchair and into the car. On the drive up, I was so distressed that I told Granny Mac exactly what I thought of her son, Father of the Year! I held nothing back. By the time we got up there, I couldn't breathe and was having chest pains. Poor Granny Mac was crying too as she just didn't know what to do with me

Marion met us up there and we went straight to the children's ward. We spent hours in the treatment room with numerous people trying to unblock that damn peg but it was not to be. The said we would probably have to go back to Edinburgh the next day and I told them "well you will have to take him, cos I am not going!". They tried numerous times to get a drip into him as well but his veins were crap which distressed me all the more. Bloody hell, had he not had enough? I cried most of that time with Marion getting permission to bring me cups of tea, which believe me, is NEVER allowed in the treatment room! Marion left at 11, three hours after her shift should have finished. It was her wedding anniversary too!

They managed to persuade me to sit in the parents room for a while but then they called me back because they needed to get a drip into Jack otherwise he would be dehydrated. Granny Mac was getting upset again so I knew that I was gonna have to pull up my big girl panties and just face it so back through I went. It was after midnight by then and I was rung out. I persuaded Granny Mac to call her husband and go home cos she looked as bad as me. Lynette stayed as she was going to be staying with Jack overnight. Just after 2 am we got Jack into a room on the ward. The drip was in but the peg was still blocked. I kissed him while he slept on, oblivious and went home.

I woke up the next day, feeling as if a huge weight was sitting on my chest. I ached everywhere. I rolled out of bed and saw that I had a text from Lynette saying that she wished she had good news to impart but that things were still the same.

I dragged myself up to hospital, resigned to the fact that I was probably having to drive back to Edinburgh.
Oh joy! But there was a glimmer of hope. A doctor was called and he said he probably could replace it, as it had been a week since it was put in so it should have healed and meshed now. I suggested he call the surgeon in Edinburgh to check just in case. He then spent the next hour trying to unblock the peg too, putting wire down it but the damn thing just wouldn't budge.

Granny Mac came to visit and the two of us sat with Jack.I apologised for losing it the night before and she said it was perfectly understandable!  Eventually at 1.30 pm the doctor appeared and changed the peg. When he took the blocked one out he showed us what was causing the blockage. There was a solid lump of white which turned out to be calcium, the supplement he was getting to help his broken leg heal! He had only been on it a week and a half but since it had been given with all his other meds, it had just slowly attached itself to everything until one day it became rock hard! Who'd have thought?

I was so relieved!

Ah happiness at old friend Red!

After I took Jack home, it took me weeks to recover from my melt down. I now know that it was the final straw after 9 months of hell and holding it together.

So please tell me I am not alone?

Monday, 14 January 2013

Would you work 100 plus hours a week for pennies?

I have always believed that laughter is the best medicine and I have been getting it by the bucket load since Holly Dolz came home for Christmas.

She is the person I get to be childish and totally daft with. Last Saturday we were out and about trawling the D.I.Y shops. We were fed up looking at paint and wallpaper so we had a drive around before going to the last shop.

We had the new Fun cd playing in the car and we had been dancing and singing at the top of our voices. We pulled into the car park of B & Q where we had a mad 5 mins, dancing and singing in the car. No one paid us any attention which made us laugh all the more! Holly was doing this crazy kind of dance with her hands flailing in the air, head shaking forwards and backwards and honestly she looked like she was having some kind of seizure!! I was crying with laughter. I think even Jack would have laughed if he had been there.

The giggling continued while we shopped and all the way home. As I was trying to reverse the car into my drive, we were giggling and laughing then she said something that made us both laugh so hard that neither of us could get breath! So there we were halfway across the road, blocking both sides, unable to speak, helpless with laughter and tears were running down our faces. We must have been blocking the road for over 5 minutes!

Truly she is the best tonic for me.

Funny girl

Jack hasn't had a great week. The seizure monster has been out to get him. Friday was the best day as he was able to sit up and roll around on the floor. For Christmas, I bought him some clip together mats but still he manages to split them and this means his skin gets rubbed on the carpet. When I was putting him to bed last night, his wee knees were red from trying to get up and his knuckles on one hand were red too.. A bit of moisturiser and this morning they were as right as rain.

When he came home on Thursday he was sleepy from a seizure so I hoisted him onto his beanbag where he lay listless and lethargic. I took this opportunity to get in there for a cuddle, a wee sing song and some tactile play. He rewarded me with such a heartbreakingly beautiful smile that I had a lump in my throat but then the magic was broken as he literally tried to climb out of the bean bag. No mean feat, believe me!

He is such a precious little boy. Mind you he is so not little these days...that boy has been sprouting chin hair for months. I have resisted the urge to start shaving but it looks like the time has come.....oh my do you shave a guy??? Answers on a postcard please....

Gorgeous boy
Recently, with all the stuff in the news about cuts to benefits for people with disabilities I am beginning to wonder at times how I do actually manage to keep smiling. Then someone mentioned families like me who are a drain on the state and it is enough to make me want to scream.

I don't actually get that much from the government and when Jack happens to be in hospital for too long, the little I get is taken away from me as it is deemed that the hospital is essentially doing my job for me.  This is such a lot of bullshit!

Most parents of children with a disability like Jack's are unable to leave their children all day every day in the care of nurses as they do not have the time to give him the kind of care and attention he needs. It costs parents more when their child is in hospital as although often their room is free, cooking facilities are very basic, just a microwave and we all know how much microwave meals cost! Then there is the constant travel when your child is not in a local hospital. On top of that you are still running a home cos your other child is being looked after by someone in your house. I could go on and on but really, what is the point?

So I thought I would give you just a wee sneaky peak into my world.

Looking after Jack, although a lot of work, is by far the easiest part of caring. I love him so therefore it is not a chore. The stuff that gets me down is the endless shit that goes with that. There are so many people involved in Jack's life, many people coming in and out of the house, lots of appointments, meetings, therapies, school. Often the appointments are a few hours away which takes up a whole day. Then there are the everyday niggles that school and respite have, that seem huge to them but make me think....."what NOW?"

Everyday Jack goes to school with a feed pump, feed, suction machine, school bag, magnet for his VNS, seizure diary, school diary, protective helmet, his soft collar for his neck, a spare peg in case his falls out and his emergency meds with the protocol. If I forget any of this it means I have to trudge off to the school to hand it in.

Jack's daily medicine box

Some boxes are inside others and on top of others to make them fit!

As well as that I have to be in for deliveries of all his feed, syringes, sterile water, pads etc then unpack it all and find places to put it. Jack's bedroom often resembles a storage room with boxes piled up. I have to constantly keep on top of what medication he still has, what's required and it seems every week I am ordering something or other. On top of that I have to get the spare equipment for his suction machine from another source so constant juggling and remembering things are the name of the game. Forgetting a medication is a disaster on an epic scale as most of his epilepsy meds have to be specially ordered.

His bed is constantly plugged into the electricity and nightly I have to make sure his hoist, feed pump and suction machine are charged. My electricity bills are not your normal household bills and my heating is just as bad as it is really important to keep him warm.

A set of bedding gets washed every day along a v pillow cover, a protective mat and at least two sets of pj's. I only get so many syringes so they have to be washed and reused. I have to say, in all, this is the job that sucks my will to live the most! Tee hee hee.

When I pack a bag for him to go to respite, it takes me nearly two hours as all his clothes have to be labelled and listed. All equipment going with him has to have their chargers with them and I have to make sure there is just the right amount of feed, syringes etc with some spare in case of accidents. Medicine has to be counted out as you can not give them too much, just enough for the doses while he is there and then again, some extra just in case.

Guess who this belongs to?
This is one half of Jack's respite bag, this part is full of feed, syringes, pads, etc

This is the other half filled with clothes
This is the two parts joined together ready to go

I am on constant call from the school and respite so my mobile and I are practically joined at the hip. Respite doesn't mean "let's party!" it's more likely to be "let's collapse!"

If I was in full time employment, I would actually be working nearly three 40 hour week jobs? No way on earth would an employer be allowed to work you that hard yet it seems the government think you should and save them a fortune.

What do you think?

Sunday, 6 January 2013

So what does 2013 hold for you?

Happy New Year everyone.

Happy New Year

I hope you all had a fantastic Christmas and that 2013 will be good to you all.

Have you made any New Year Resolutions? I usually don't unless I know for sure I can follow through. This year I have made two promises to myself. One is to try and write more letters. That doesn't sound too difficult but when we are living in an age where sending a text or email is so much quicker, it's not as easy as you think. Plus I miss that buzz you get when an actual letter as opposed to bills, leaflets etc drops through your door. The last time I got regular letters was when I lived in Canada for 3 months and that was 14 years ago!

The second one is an idea I saw on Facebook. You basically take an empty jar at the start of 2013 and every time something good, happy or funny happens, write it down and pop it in the jar. Then at the end of the year, open it up and read all the great things that happened in the year. Simple but lovely.

We had a lovely Christmas. Going to Rachel House was just the tonic we needed before the madness began.    Christmas Eve was very chilled and we spent the evening watching our favourite Christmas film The Muppet Christmas Carol. I love the soundtrack and had been singing it for weeks much to everyone's disgust!

Holly and Jack both opened a present from under the tree on Christmas Eve a tradition in our family since I was little. Jack opened a present he was sent from Dreams for Emily in the USA. This is a charity set up by the parents of a child who has a similar diagnosis to Jack. For the last two years they have sent gifts at Christmas to children just like Emily. Such a brilliant thing to do.

Jack opening his gift from Dreams for Emily

Outside Rachel House....gorgeous eh

Holly opening her prezzies

Jack opening his presents

Holly helps her brother to open stuff

My two babies
It has been a fairly lazy two weeks and tomorrow Jack goes back to school so I have a list as long as my arm of stuff that "I must not FORGET" to send to school with him. Holly doesn't go back to Uni until the 20th so I am gonna spend as much time with her as possible and give her lots of hugs!

New Year is always a time to think about the future and I now have to seriously think about writing my book along with all the other stories that are rattling around inside my head. I have to stop worrying about whether or not people will read it and just DO IT! It truly is only me who holds me back.

So what are your plans for 2013?

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