My Left Kidney.

haha (the title's making me chuckle) Hello Everyone, Last week I had an appointment with my Urologist. I wish I had kept the letter because I wanted to know the exact dimensions of the stone that the CT showed up. Anyhow it seems to be at the bottom of my kidney which is blocking the flow of urine into my bladder. No wonder I've been getting so many UTI's the last few month (yay...NOT!) He has booked me in for next Monday, he wants to just explore what's going on then decide if he needs to remove the stone if he thinks it's going to effect my kidney/bladder in the long run. I have my fingers & toes crossed that he will get it out!! The stone is left over from the one that he removed last November. That stone was the biggest one I have ever had! I didn't want to see it as I have a pretty weak stomach for those kinds of things which most probably find strange due to all the operations I've had over the years. When he takes most stone out he "blast them out" and because they're shattered into so many tiny pieces it means you can leave bits behind. Over time (say months) if the stone hasn't come out on its own then it gets stuck and just grows and grows until bam! It needs to be removed. I have this procedure anywhere between every year up until 3 years. It always seems to be my left kidney in which this thing keeps recurring! Dr. Vaughn says that this kidney is hard to get to, not only is it smaller (everyone's is I believe) but the "tube" leading from the kidney to bladder is smaller and my kidney isn't in the "usual" spot which means it takes longer for him to find and get in there to blast the stone out. When I was in my early teens I made a life changing decision to take over one part of my life. This meant no more help was needed from family or nurses. I don't exactly remember how we found out about this thing but all I know is that when Mum and I heard about it we (I) knew it was something I had to do to take control over my life, to be able to one day maybe live almost independently (which I do now). We researched what is know as an SPC. SPC stands for Supra Pubic Catheter. A SPC Catheter is a tube that goes into your bladder through your abdominal wall (at your pubic bone) which continuously drains urine from your bladder. It is held in place by an internal balloon that you cannot see. The catheter should be changed every 4-6 weeks. From day one my bladder has been unable to sustain this as i have so much "yucky" stuff in my bladder so mine is changed 2-3 weeks. I remember Mum and I made an appointment with a Dr (not Dr Vaughn) who did this procedure. He took one look at me and says something on the lines of "I don't recommend a SPC for a girl as young as yourself!". Then he turned to my mother and told he that "you're daughter could end up getting cancer because of the SPC". Now if you all knew my mum she is one tough lady... Not much makes her cry! When caring for someone with Spina Bifida I guess you have to be a little tough. Anyway as soon as this Dr said the word cancer I just looked over at mum (I was in shock) and I saw her cry! I don't think I've ever seen my mum cry before that day. It broke my heart that the one thing that I could do for myself could give me something so bad!!. Fast forward a few months and we had heard that there was a Urologist that had just started working at the Private hospital. He had moved from Melbourne and in my opinion it's the best thing he has ever done!! If it wasn't for him I don't think I would be living the life I have now. I know he won't read this but... thank you Dr. Vaughan you have changed my life forever!! There is not much information out there only from other people's experience. If you would like to know more please leave a comment & I shall try my hardest to answer you questions. The catheter is something I have been wanting to talk about for a while but have not plucked up the courage (only close family know about it) to speak or write about. But in the end my book is about my life, not just all the good and things I want to share but things that are bad and things I keep close to my chest. If I'm only to write about my good experiences it will never be out there to help other's understand what I've been though or to help those with SB. Which is why I want to write my book in the first place. I don't tell people about it because I am embarrassed and I don't want to be bullied or people to make fun of me. But I hope you can now understand a little more about me. Have a great day guys & keep your fingers crossed this kidney stone gets taken care of! Amanda <3.

busy week!

Hey Everyone, This weeks been a busy one! First I had an appointment with my Urologist on Wednesday afternoon. He has sent me off to get a CT scan of my Kidneys & Bladder. Those damn kidney stones have been giving me hell for the past few months!! I've had said stones in for 3.5 years now, they hasn't grown much so nothing was done. But I've been getting a lot of UTI's and my SPC [will explain in next post] has been changed more frequently Grr... Thursday was World Spina Bifida & Hydrocephalous Awareness Day!! In the afternoon we had dance lessons! Friday the community nurses came to change my bandage on my left foot. I have had a wound on my heal for almost 2 years now. It's great now because its very close to healing. Can I get a "hallalulia!!!!" [more about it later] Saturday [today!] we went to a local fair/show. It was SO much fun!! Even Hailee went on one of the rides, the Feriss Wheel!! If you know her she HATES anything like that! We go her a show bag [Dora of course] and we got Daddy one too! hehe. I shall put some photos up tomorrow! I won myself one of those "over the top-huge" plush animals, Giraffe. I am totally in love with him [whom has no name]. Well that's my week! How was yours? I have an appointment on Tursday for CT so will let you know how that goes! Amanda <3 Oh yah almost forgot...we have some pretty exciting news about miss Hailee. Will let you in on it next week ;)

over night hospital visit.

Hello Everyone,

This time it's not for me, I bet your thinking due my last post that it would have to be Hailee in well guess again!

Yep that's right it was for....the husband!. He has been fine ALL day up until 9pm when he first complained of back pain, he went to bed and within 15 minutes came back out to the lounge. He was fully dressed and was clutching his left side. He asked me to ring my mum to come and get Hailee as he needed to go to hospital because he thought he may have appendicitis (your appendices is on the right so I knew it wouldn't be that) he was white as a ghost and started throwing up.

I rang my mum. She told me she was coming and that my Uncle would drive Steve to the hospital. I packed Hailee a bag and waited for them. She came in and said he should have got an ambulance but he didn't want one plus I wanted to go with him and I knew they wouldn't help me in. My Uncle pulled up outside the house, Steve got in and he speed away. I was SO pissed!! I hated seeing him in so much pain and I knew if I stayed home I wouldn't have got any sleep. So mum decided to drive me up to hospital. She couldn't really find a good park so she she parked in the ambo section. I nearly died haha, I'm surprised she didn't get a fine.

I "ran" inside. No one is in the waiting room which is a good sign. Meaning he didn't have to sit there long and was already in a cubical and most likely seen by a doctor... thank god!. I waited outside for a few minutes then a nurse finally let me in. I pretty much ran to Steve's side. My Uncle who was still with him said, "looks like a kidney stone". I saw he was hooked up to morphine, the pain was so bad, I just could see it in his eyes... I wish I could have taken it away.

The nurse asked me a few questions and I mentioned my urologist's name and said that they needed someone to call him and only him (thank good ness he was on rotation) The nurse gave him something else to help with the pain because the morphine just wasn't cutting it (sad face). Pretty much as that hit his veins he was out like a light! coming to it every so often.

My Uncle is still with us (it's now 1am) I told him to go home as I knew he had to work early the next morning. I said if we were sent home we would be ok to find our own way. 10 minutes later the pain started again, doctor came in and said he would be having a CT in the morning. So we weren't going anywhere!!. my Uncle left (with hesitation).

Steve was just moved to a bigger room for the night, which luckily had a bigger/softer more comfy bed (it's now 2.05am). He can now get the rest he needs! As for me I am tired so I shall close my eyes for a little while.

I opened my eyes and looked at my phone, it was 3.30am. Steve hadn't complained about the pain until he woke just after me.

Strange to say but time seems to go so quick when you're in hospital. I think/say that every time I'm a patient but honestly even being a loved one of said patient time goes quick! Hmm I wonder why that is?.

It's now 6.30am both of us have had a rough night. Yes I spent the night in ER with him, sleeping every hour for aprox 20-30 minutes in my wheelchair (it was pretty comfy). The night nurse came in to check on us and said to me that she had ordered me breakfast... that's so nice of her! Poor Steve can't have any though. He says he isn't hungry at the moment but is thirsty, so I had been giving him ice all night. We are hoping to be on top of the list for the CT scan this morning, well it didn't pan out that way!.


Fast forward a few days.....

It's now Friday and he has only been home for a just over 24 hours. The doctor was hoping that Steve could "pass" the stone on his own but decided that due to him not getting any better he would be operated on the next morning! BEST NEWS I'VE HEARD ALL WEEK!!! I got a phone call from the urologist at 5.30pm Wednesday night to say he had just come out of surgery.

Both Hailee and I are SO glad to have him home, he is still not 100% but defiantly on the mend.

Night all <3

I'm back!!!!

Hello Everyone.

Wow I can't believe how long it's been since I last blogged. I do apologize!!.

Alot has happened in the last few months since my fingers last touched this keyboard (oh how I have missed you). First off I am feeling much better after the "problems" I had back at the end of Nov. Yay!. We this was our first christmas with out Nan.... it was hard but we survived.

On boxing day Hailee, Steve and I moved out of my parents place and into our own rental. It's the most gorgeous house (only 3 years old) so everything is very new and modern, the most important thing.. well there are 2. 1) The place is wheelchair accessable! & 2) It only takes Hailee and I 5 minutes to walk over to road to mum's work and to the supermarket.. score right?!. The first week felt quite strange because it just didnt feel like "our home" but now it feels like we've always lived here.

Time seems like it has sped up, it honestly doesnt feel like it's been 4 months since Nan has gone. Honestly it's quite hard to step foot in Lorraine (My Auntie)and her home. As to date we have only been there 3 times. The first was to clean out her waredrope. Wow, doing something like that is so surreal!!. I never thought I would do anything like that in my life.. especially for that woman.

It's strange it doesn't feel like she has gone, I was talking to Steve the other day about it, how I imagined I would cry non stop for months but honestly I have hardly cried at all. I think it's because we have not picked up her ashes and scattered them yet (If i got a say I wouldn't want to scatter them.. I want them here with me). But I am just a grandchild, I am not her child.

Ok let's move on.

It's my birthday in a few days. I'm looking forward to finally turning 25! (yep I'm a spring chicken) all my life I wanted to be 25, people seem to respect those around them at that age, it's like your not a child but you not a oldies(hehe). I'm also not looking forward to it because I never imagined being 25 without my grandmother. It's funny how you see a person that you love more then life it's self living forever. Unfortunatly it's not true :( Another thing I've come to realize, grief is a very funny thing and is different for everyone.

Ok well that's it in a nutshell & it's time for me to catch up on everyone elses blogs. Bye!

Oh, one last note. Hailee is growing up to be a real little miss, I don't mean she has an attatude(which does come out somedays.. oh god help me when we come to the teen years lol). But I mean she has grown up so much in the last few months, she's talking better, she's taller and just really seems to know who she is and what she wants chringes.

Amanda <3

I'm out but not myself

Hello Everyone,

I'm out of hospital (I have been for almost a week). Though I am out I'm not myself :(

I felt fine in there.

I came home took my pills/ felt worse than ever.

I went to my GP to change them.

That was 2 days ago.

These new ones haven't kicked in yet.

I just want to be back to 100%.

I hate feeling like this!.

I guess my body is trying to tell me it's time to slow down.

To slow down after the horrid month I had last month.

Ok time to lay down and get some rest...blog again soon.
<3

what is Spina Bifida

Spina Bifida is a developemental birth defect caused by an incomplete closure of embryonic neural tube. I have whats called Spina Bifida Myelomeningocele which is the worst of all 4 forms of SB, which leads to most people having a disability, like myself.

Spina Bifida can be surgically closed after birth, but this doesnt mean normal function can be restored to that part of the spinal cord. SB can be decreased by upto 75% when the mother takes a daily intake of folic acid upto 3 months before conseption. [When my mother was pregnant this was not known my family was told it was genetics that caused my SB].

The unfused portion of the spinal column allows the spinal cord to protrude through an opening and looks like a cricket ball on the back of the baby. That portion of the cord and nerves are damaged and or are not properly developed. Because of this there is usually a fluid filled sack surrounding the spina cord.

Signs and symptoms:

Children with SB often have what's called Hydrocephalus, this is excessive fluid on the brain (everyone has this fluid which our brain essentually floats in). According to the Spina Bifida Association in America over 73% of people with SB are allergic reaction to latex.

Pathophysiology:

Spina Bifida is caused by failure of the neural tube to close during the first week of pregnancy. In a normal baby the neural tube closes occurs around 28 days after fertalization. Spina Bifida does not follow a direct path of heredity. Studdies have shown that a woman who bares one child with SB have about a 3% chance risk of having another baby with it.

It is now recommeneded that all women who are wanting to get pregnant should take a folic acid supplement 0.4mg a day is the recommended dose. For women who have already had a child with SB should take 4-5mg a day.

Please see a doctor before taking these supplements though.

Prevention:

There is no single cause of SB nor is there a known way to prevent it completely. But as I said before folic acid somehow has been known to help lower the risk. Food sources with folic acid - whole grains, dried beans, leaf vegetables and some fruits.

Screening During Pregnancy:

Most neural tube defects can now be detected during pregnancy by testing the mother's blood and having a detailed fetal ultrasound. SB can be associated with disability as in Downs Syndrome because these pregnancies may result in a spontanious miscarraige. Genetic councilling and further genes testing can be done such as amniocentesis. Though now days ultrasound screaning for SB is parshly responsible for the decline in the defect, as many parents decide to terminate the pregnancy out of fear that the baby will have poor quility of life. But with Modern medical care and more being researched the quility of life for many SB kids has greatly improved.