CDH

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#AutismAwareness – A Very Inspiring Find

Published November 8, 2013 by mandzmagee

Having a scroll down my Facebook friend updates I found myself absolutely inspired by a post that a fantastic UK based Autism Awareness group shared.  Personally I think the author is brilliant in wording her Autism life experience into a comparison that anyone would be able to understand wholeheartedly! I simply had to share with you’s all!! If you’re on Facebook like the group … Their posts are always inspiring!!  Links given at the bottom of the post.

The post went as follows …

Before You Complain

Before you complain about your child waking up too early….
Imagine if your child didn’t sleep at all because their brain and body couldn’t connect correctly…or if they woke up for 3 hours in the middle of the night just because

Before you complain that your child is ignoring you or not listening…
Imagine if your child didn’t acknowledge your presence, didn’t even realize you were there, didn’t respond to their own name or even a loud BANG

Before you complain that your child constantly wants you to play and won’t play by themselves…
Imagine if your child NEVER wanted to play with you or freaked out if you attempted to play with them

Before you complain that your child won’t stop talking….
Imagine if your child couldn’t talk or if your 3+ year old couldn’t even call you mama

Before you complain that your child’s insurance has a deductible or high copay…
Imagine if your child’s insurance had a high deductible and high copays…AND doesn’t even cover what your child needs, even after paying the deductibles and copays

Before you complain about your child throwing a tantrum because they can’t get their way….
Imagine if that tantrum was so extreme that the child was screaming(like they were being tortured) for hours, punching the walls, hitting themselves or you, banging their head on the floor, etc….and even if you give them what they wanted, they are so deep in that meltdown, that it doesn’t help. Or worse, if there’s no apparent reason for the meltdown.

Before you complain that your child had a potty accident….
Imagine if your 10+ year old was still in diapers (that you have to change) because their body doesn’t work right or their body is so undersensitive that they can’t feel when they have to go.

Before you complain that the schools don’t give your child all they need….
Imagine if your child needed special schooling and 20+ hours of therapy per week and wasn’t able to get any of it

Before you complain that your child won’t eat their peas…
Imagine if there were only 4 specific foods that your child would eat(not necessarily because they’re picky) and nothing else.

Before you complain that your child is whining….
Imagine if you couldn’t understand what they were whining about.

Before you complain that your child is too emotional….
Imagine if your child didn’t show any emotion…not even happiness

Before you complain that your child is always catching colds….
Imagine if your child has been to the ER so many times you can even guesstimate how many…you’re on a first name basis with the nurses…you have no clue how many times you’ve answered the exact same questions, sometimes to the same person

Before you complain that you don’t get enough alone time or enough breaks…..
Imagine all of the above….and even less alone time and less breaks because there are only a couple people that can handle your child or know enough about your child to make you feel confident leaving them

Before you complain….
Imagine what other some parents deal with on a daily basis…and never complain or ask for anything for themselves. All they do is pray that their child will get the help they need…and that others might be a little more sensitive.

Wrote by Nikki Hazzard Bumgardner

Links – Will open in another page (if it behaves!)

Autism Storms and Rainbows UK – http://www.facebook.com/pages/Autism-Storms-and-Rainbows/152663228214371

Direct link to the post – http://www.facebook.com/permalink.php?story_fbid=260237034123656&id=152663228214371

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The Caregivers Check List and the “You Time” Challenge! – #Caregivers #Parents

Published January 9, 2013 by mandzmagee

Natural feelings and thoughts that can go through a carers head.

These thoughts are what can come from being a completely selfless human being, giving care to a friend or a loved one who is dependant on you and has entrusted you to serve their care duties.  If there is one care giver in this world that states that they haven’t had at least one of these thoughts pop into their heads, I’d be the first person to stand there and tell them that they’re lying.  I myself have felt low, jealous, constantly tired, so on and so forth because I overworked myself and didn’t give myself the chance to have a little bit of “Me Time”.

It wasn’t until I got with Stuart after having years of very limited support with Theo, I realised that I didn’t have to do everything myself, if I was feeling low he’d take Theo out and give me the chance to catch up on some sleep or have a shower or do the dishes or just do something where I didn’t have to be 100% alert as to what he was doing.  I felt guilty as sin that he was doing it and I had no option but to accept the fact that he was doing it because it was his way or no way.

Once I’d gotten over the whole self indulged guilt trip and realised that he was doing a fantastic thing and improving my care for Theo I finally accepted things as they were.  That little bit of time that he was giving me for what ever reason absolutely improved my relationship with Theo, it improved his bond with Theo (to the point where he now classes him as Dad), it also gave him the chance to help Ali, Theo and Alex a better relationship as they all seen that the way forwards was a family unit, not Mummy doing it all.  All round that man has worked wonders for our little family.

However … back to my point … Are you a caregiver that’s felt any of those feelings or had any of those thoughts?  Are you a friend of a caregiver (no matter what the situation is) that has noticed changes that could be fitted around any of those thoughts or feelings in their friend?  Make a difference for yourself and the fantastic work that you do … Have a little bit of “You Time!”.

Before your time of being a care giver, did you have a hobby you used to take part in that you gave up?  Did you have friends that you never get the time to speak too face to face any more?  Did you meditate?  Did you go swimming?  Did you do anything that you’re now always thinking that you’d love just half an hour to yourself to do?    Is there something new you’d like to be able to try?  Do you want to learn how to knit, embroider, cross stitch, play a musical instrument, is there a cupboard that needs cleaned out that would give you so much pleasure out of finally getting it done? … you probably get the point by now …  But this is your chance to grasp it!

If you are lucky enough to have someone that the person you care for and yourself trusts to take over the duties for half an hour, an hour, two hours … probably pushing it but … over night?!  Ask them!  They’ve probably been sitting on the edge of their seats wanting to offer to help out however not wanted to offend you or diminish the fantastic job that you’ve been doing so thought it best to wait until you asked them. (Or if you are that person that would love the opportunity speak to the Angel and offer!).  Lets face it, the worst that can happen is be told “No” … You’ll have been told worse in your life at one point or another!

If you haven’t got anyone that you can turn too, when the person you’re caring for is in bed at night, out at a meeting/school/playgroup or so on n so forth, Grant yourself a little piece of that time to indulge yourself in something for you!  All the other jobs and tasks and routines can be arranged around it, just give yourself that time!!

My challenge to all Caregivers 

Start with half an hour through out a week, even if it’s 5 mins one day, 10 another etc.  Just give yourself that time to get your mind away from the thoughts above and 100% back onto the job.

Think of it along the lines of … You’re not being selfish because you’re doing something for yourself … You are improving the perfection on the care because you have done something for yourself!

Keeping Faith

Published September 23, 2012 by mandzmagee

Five years ago September 3rd at 6:16am I gave birth to a beautiful little girl who I called Faith.  I have to admit I don’t really follow my religion so she wasn’t named that for any religious belief, I called her Faith because I was always going to believe in her.

Good Friday 2007 I found out that I was pregnant with Faith when I went to an ultra sound appointment because I had possible polycystic ovaries, my periods were all over the place (or so I thought), I was bleeding really erratically – you could imagine my surprise when the screen was turned to me to see a little life of 15 weeks infront of my eyes!

I was taken straight away to a side room after having the ultrasound and receiving my picture where I was informed that this little baby inside me had a life threatening condition, even as small as 15 weeks they were able to tell me about her Congenital Diaphragmatic Hernia.  My mind warped, I wasn’t expecting to be told that I was pregnant never mind the fact that this child had a life threatening condition.  The midwife went on to tell me all about CDH, however no matter how long she kept talking I was taking very little in – I was just in absolute amazement at the little picture that I was staring at!  I managed to remember that there was a 70% chance that the baby would have a chance at life and I had to make my decision as quickly as possible if I wanted to keep her.

I left the hospital and went to my parents to pick up Theo then went over to call my cousin – You’ve no idea how much I appreciated the fact that she got finished work early on a Friday.  We took the kids out to a local forest and i told her everything I remembered.  I actually think that she was more shocked than I was, I’d already made my decision at that point of time that I was going to be keeping the baby, she’d made it those 15 weeks – I couldn’t not give her a chance at life!!

What CDH means is that she had a hernia in her diaphragm on the left side which was allowing her organs from below raise up into her chest causing troubles for her upper organs to grow and develop naturally.  Her right lung had grown but not to capacity that it should have been, her left lung had stopped growing and her heart had been pushed over to the right side of her chest, consequently it hadn’t developed as much as it should have either but it was still beating strongly!  If you’d like to know more about CDH please look here http://www.cdhuk.co.uk/

The following few months were like the biggest roller coaster that I’d ever been on.  Trips to Dumfries to Glasgow, constant hospital monitoring appointments, constant Dumfries hospital appointments, diabetes going higher and lower, developing pubic symphysis, the stress of not knowing of what the end result was going to be among all Theo’s appointments with different health professionals, social workers, setting up respite for to be able to give birth in Glasgow as no one was able to take on his care in the family, him going through his self harming stage, trying to make sure that Ali understood everything that could possibly happen.

My care plan was put together, I was going to give birth in Yorkhill Hospital for Sick Kids in Glasgow, it was going to be a natural birth as that’s best for babies with CDH, She’d then be taken up to the ward and I’d be residing in the Ronald McDonalds House across the road from the hospital.

Well when she decided that her wait to show face was over she kept everything true to form.  She arrived at 36 weeks, my waters broke at stupid o’clock in the morning and I was too far dilated to get to Glasgow. On arrival to the birthing suite I took a funny turn at the exact same time as Madam – I completely passed out, nursing staff struggling to bring me back round, they lost all Faith’s stats at the same time.  When I woke up I was surrounded by a team of 9 midwifes and 3 doctors.

Needless to say I wasn’t travelling to the hospital that she was supposed to be born in, this terrified me as I knew that all the staff and care equipment that she was depending on having immediately at birth was 100 miles away!  I was told that I was having a C-Section just in case I developed any more problems as I had just had.

Arriving into the theater where she was to be born I was introduced to the surgeon who was going to be carrying out the procedure.  .

“Hello there Miss Magee, My name is Dr *We’ll leave this bit blank*, I’m going to be carrying out the operation, have you chosen a name for your daughter” then he paused “Oh I mean baby, sorry do you know the sex?”

Well was a bit late if I didn’t wasn’t it!!

“Yes Dr *WLTBB*, you’ll be pleased to know and her name is Faith”

“A beautiful name Miss Magee, I really recognize your face should I?”

“Well does the name Theorathamos P S mean anything to you?”

“Ah, I see Miss Magee, it really is lovely to see you again, I’ll go get organised while you get your epidural”.  He genuinely couldn’t get away any sooner than he did on finding out how he recognized me.  Three years previously he told me my son had ADHD, went on to ask me if I would like to have Ritalin after spending no longer than 10 minutes in his company.  After the complaint was lodged he was taken away from the child development centre and well – apparently he was now dealing with babies births – Great!

“It is lovely to see you Doctor, in a twisted bout of fate I suppose you’re the one person that can genuinely tell me that they’ll make no mistakes and do their best to keep her alive”

Yup the look on his face was priceless but I was terrified and full of dia-morphine and lets be fair – anyone that knows me knows that I’m not backwards at coming forwards!

As the whole procedure was being carried out I lay and spoke to a male nurse the entire time about my Youth Work and Autism.  He was a lovely guy, I must point out now it wasn’t an intentional conversation for this Doctor – the guy was really interested about my experiences with it because his nephew also was under the Autism spectrum.

Mid conversation all of a sudden he said “6:15, sorry no 6:16!” I looked at him bewildered “Faith’s time of birth.”

I turned to look in the opposite direction to see the surgeon rush out of the room with her, I was prepared for this, I was told that was the way that it was going to happen.  The nursing staff respectfully let me just sit quiet and dwell on my nervousness, I didn’t want to speak to anyone until i knew that she’d at least survived the birth.  about 15 minutes later the doctor came back to me and let me know that she’d successfully been put onto the ventilator and as soon as I’d recovered from the epidural they’d take me through to see her.

My mother arrived with my two cousins Tammy and Erica to support me through going to see her and spend time with me before I was going to be setting off for Glasgow to be with her, as soon as I’d seen her she was leaving pretty much straight away so that the specialists could care for her and arrange her operation to fix the hernia.

She was the most precious, beautiful little girl I’d ever set eyes on, of course i’m totally biased tho lol.  I was a bit freaked out by all the wires and ventilator but i knew it was essential, I couldn’t hold her as she was too fragile but I didn’t mind because i knew that in a few hours I was going to be by her bedside able to talk to her and stroke her hand.

Or so I thought …

At lunch time I’d been told that she’d arrived there safely and once all my post operation checks had been sorted out i’d be supplied with an ambulance to take me to Glasgow.  I sat up to eat my lunch and all of a sudden my bed was soaked in blood, over the hours to come I’d developed pains in my shoulders and my ribs and 36 hours later I was having surgery because I’d began bleeding internally from the damned polycystic ovary!!  I spent 4 days trying to get over two operations, fretting about Faith’s tightrope of a lifeline she had and on the Friday when I got told that she was going to the operating theater to have the hernia fixed I decided that I was going to move hell and high water to get there to be with her.

Against the doctors advice I got to Glasgow by 5:30pm for her getting back to the ward and settled in.

I went up to the ward with one of the nurses from the Queen Mum’s. When I got into the room that Faith was in I couldn’t help myself but break down. That little girl was laid out on her bed looking as if she was taking fits (it was just the type of ventilator she was on tho!). “What the hell have i done to her” I asked Carl Davis. “Given her the chance to live” he replied.

He went on to explain about the ECMO machine and how Faith had to go onto it to give her lungs a chance to develop. They wanted to put a fluid into her lungs to try and let them grow and develop as they were very condensed by her stomach, liver and bowel in her chest cavity.

I went back over to the Queen Mum’s and waited on them putting her onto ECMO and the doctors coming over to talk to me about everything since i had such a lot to take in. Tammy, Erica and Aunt June came up to make sure I was alright following a call from the hospital asking them to come and stay the night.

Erica stayed the weekend with me and supported me with everything. I stayed in the queen mothers for 5 days then finally got discharged. I went to stay in Ronald McDonalds, the parent accomodation across the way.

Daily I’d spend hours with Faith, her ups and downs with her health was just like that rollercoaster i mentioned earlier.  The fluids they were using to try and expand her lungs wasn’t working efficiently so they decided to try her off the ECMO machine and going onto Kidney Dialysis.

All the time she was on ECMO she maybe looked puffy but she always looked a picture of health. It’s so deluding how healthy they can look when it’s the inside that’s not working.  I got told she had less than a 50% chance to come off ECMO because of the capacity of her heart but she turned that around n was able to come off … again … less than 24 hours later … fair enough she went back onto it but she still got off it!!

The second time that she was back on it they were talkin about her future plans … they wanted to move her into another ward … PICU where they could give her 24 hour kidney dialysis instead of 12 hour kidney dialysis. This was scary but such a vital thing to happen.

She moved through there and within a few days they wanted to try taking her off her kidney dialysis again, they tried twice on the Friday morning and she almost slipped away both times, however they topped up her fluids and gave her a dose of steroids and she was fighting again. Third time lucky!!

Kidney dialysis was working fine … she was running at negative levels for the first time in her life (which amazed everyone as she always liked to be a little positive!).  Then she caught an infection … blood cultures showed that she was sensitive to a couple of the medicines that they’d been giving her.  They started giving her antibiotics and fight against the infection.

In the mean time she was struggling to maintain a temprature, her bowels hadn’t moved in several days and on Tuesday 30th October she took a cardiac arrest in the morning.  The doctors asked me to attend a meeting in the afternoon to discuss the plans for Faith and they asked me if they could switch her machines off as it was getting harder and harder for her to fight and they’d nothing more that they were able to do to try and help her, they’d tried other specialists all around the world to see if there was something that could possibly be a solution but everything had been done.  As much as I was devastated that I had to make this decision I knew that without all the machinery she’d not be there.  If I was to tell them that I wasn’t going to switch off the machines I’d be prolonging her pain and making her worse.  They had my consent.

Tammy and my mother came up the road and was there when Faith passed over. My first longed for cuddle was my last one, but at least she got to pass in my arms and feel my warmth and love toward her.  Tammy sang to her, I think that was to stop her crying but she did so well and it stopped all of us from crying.  Faith fought on for a very surprising length of time after all the machines were switched off.

She did herself proud!

After she passed I got to bath her and get her dressed into her clothes, she looked so beautiful, so peaceful, there was no cables or wires coming from her little body.  She ended up with glitter on her … I’ve no idea where it came from but I certainly feel it’s just like angel dust.  My little angel was taken away at 6:15pm I left her at 9:45pm.  I spent my time with her giving her the cuddles she deserved so that she knew that she was loved.

Even tho Faith was only here for a short time, she’s had a massive impact on many other peoples lives.  She certainly changed me for the better!!

My Introduction

Published September 21, 2012 by mandzmagee

Well this blogging malarky is new to me and I may well be new to you – so I figured that a quick introduction to the people who will be the main stars and inspirations to my blogs would be the best place to start with my first one!!  Constructive criticism is very welcome!!  If you think you’ve read this before it’s because I’ve moved blog hosts!

The Obvious One! (me)
I’m Amanda or as everyone calls me Mandz.  I’m sneaking up too quickly on my 32nd birthday and over the years I’ve made more mistakes than I care to admit – however each and every one has made me who I am today – so they’ve been put to good use!!

My Better Half (or so he thinks!)
Stu, my online stalker who proved that persistence is key!  Back in the days of AOL chat he found me and the lad was my biggest pain in the arse.  However after not speaking for about 3 or 4 years we decided to finally give things a chance and well – 3 years down the line we’re engaged and couldn’t be happier!!

My Lunch Break Surprise!
January 6th 1998 I found out that my sore throat had legs and my Depo Provera injections was no longer needed – or more to the point not working!!  I found out that I was 36 weeks pregnant and the following month along came a beautiful 8lb14oz Alisdair!!  Amazing boy, absolute credit to himself for what he’s been through in his lifetime!!

My Autistic Teacher!
Theo is 10 years old with the mental and verbal communication level of a 2 – 3 year old.  He’s shown us all a completely different way to look at life and show us how judgemental the outside world can be.  His way of looking at life is mind boggling and inspirational all at once!!

My CDH Angel!
Faith would have been 5 years old this year, being born with a left sided Congenital Diaphragmatic Hernia she sadly passed away after 8 weeks.  Even though she’s not with us she’s still a daily part of our lives and such an inspiration to everyone that hears her story!

My Stepson!
Alex is Stu’s son who I love as much as I love my own three, he’s 5 years old and hasn’t let me miss the opportunity that I’d have had with Faith – The terrible 2’s, potty training, so on and so forth.

The Mutt and The Bitch!
Missie is our 5 year old Stafforshire Bull Terrier Bitch and Bailey is our year and a half English Bull Terrier – The pair of them are more trouble than all the kids together!!

“Cat”
Midzi is our 9 year old cat, everyone’s personal hot water bottle and your best friend – as long as you’re in the house.  She’s had to adopt the name “Cat” as Theo can’t pronounce her own name and it’s stuck!!

This pretty much sums up the stars of my blog which I’ll be updating frequently.  Anything you’re interested in my views on or just want to hear more aboutlet me know and I’ll do my best!!

Thanks for taking the time to read!!

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