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Showing posts with label embolization. Show all posts
Showing posts with label embolization. Show all posts

Thursday 26 February 2015

HAPPY 21st TO MY F.E.D

Twenty one years ago I gave birth to a beautiful baby girl. She gave me quite a shock because she arrived five weeks and one day too early on a very humid night. When I woke her father at 11 pm to tell him my waters had broken, he didn't believe me at first. But he had no choice really and soon we were flying out the door to the hospital. We were so young and so naive and so inexperienced that we forgot to take a bag of anything with us. You know what I mean - clothes, toiletries, baby stuff! We had nothing with us. Looking back now it was hilarious!

That night a new midwife was doing her first shift in a new country hospital. She was told to expect a quiet night for her first night and within two hours she got an emergency. I remember her ringing the doctor who was not too pleased to be woken up. Apparently she made the huge mistake of ringing the doctor before examining me herself. The poor woman got yelled at but there was no doubt my baby was on its way, so she managed to squirrel out of any more doctor tongue lashings.

Like her sister two and a bit years later, she was too early to be delivered in a country town hospital and the Royal Flying Doctor plane had to come up from Perth to get me. Ashton was born the following day at 2.59 pm in between calls to my closest girlfriends.I have never seen such a look of delight on my husband's face as I saw that day.

The feeling of holding your first baby in your arms is quite inexplicable. The sudden rush of love
Iand wonder when you look down and finally meet your child can be compared to nothing else. You love all your children equally but the wonder of the first birth is just so special. It was so interesting to read another blogger #Lysa Wilds from #Welcome to My Circus describe exactly the same feelings in her recent post about her son, who coincidentally has a birthday this week too.

My daughter woke up in hospital on her 21 st birthday. She had surgery the day before which did not achieve what it set out to do, so it could have been a downer. But with the help of the nurses, doctors and friends and family we still made the best of the day. Eventually Ashton got discharged and home we went for flowers, cake and visits from family.

The health sagas are not over. We had hoped for the best of 21st presents. We had hoped to be de-fistulised. However, it wasn't to be this time.Once again I thank God for a doctor who knew when to stop rather than take risks.

So now its time to concentrate on a 21st party and on life. She will be reviewed by the doctors in a few months and a new plan of action will be made.We hold our collective breaths but till then life goes on.

Happy birthday to my favourite eldest daughter. 

Till next time...xxx








Sunday 22 February 2015

FESTIVAL OF ASHTON

So it's Sunday afternoon and I am having a lazy time. Last night a group of us went to see Ciara in her production called "A little rain must fall". It was lots of fun but with a message to take away about risks and consequences . I loved the colour, the activity, the loudness and the general storyline. The production is part of the "Perth Fringe Festival"and because there are so many acts going on, Ashton and I are going back tonight to see another production. We're actually going to see a comedian because I think before this week starts we  need a good belly laugh.


So let me catch you up on this family's sagas. This week as I've mentioned already is Ashton's  21st birthday. Her birthday is on Thursday and her party is next Saturday. We have approximately 90 to 100 people coming and it is going to be a fantastic night.

Only one thing stands between today and the rest of the week. No, it's not the fact that the uni year starts tomorrow. No, it's not the fact that some people still have no idea what to wear to the party. It's all about the fact that on Wednesday her surgery has been brought forward. What the hell!

You might remember that she still needs another operation. There is still some fistula in her jugular vein and the doctor (please bow) wanted to get her back into theatre as soon as possible to finish the procedure. The original date scheduled was March 20 and though it was a bit of a distance, we sort of got used to the idea.

Which is why we're all a little in shock that the procedure has been moved to Wednesday 25th February. She was given the option of saying yes I'll have it on the new date or no keep March 20. Rather hard call to make isn't it? Whichever decision you make it is full of negatives and positives. We all eventually decided health must come first, so she has opted to have the surgery on Wednesday 25th and will therefore be waking up in hospital on her 21st birthday. Never in my wildest dreams did I see my child waking up in a high dependency unit on her 21st birthday after her 15th major procedure. She has told the doctors that she expects flowers and cake. The bets are on as to whether they will follow through.

Just to see a smile on her face, Mark and I have already given her our birthday present. If you are not on my Facebook list you will not have seen these photos so I will include them because they have made made a lot of people smile and a couple cry. It's just so nice to see her happy.

We are so hopeful that this procedure will be the last BUT all we can do is hope that this will be true. This June it will have been two years since her diagnosis. That's a huge chunk out of her life and out of ours.

See you in the hospital.

Till next time… Xxx

Tuesday 10 February 2015

NOT A POET AND I KNOW IT

I want to scream
I want to shout
I want to let frustration out.
I want to cry
I want to yell
I WANT MY DAUGHTER TO BE WELL
I want some things to go our way
I want to have a peaceful day
I want to find a lucky clover 
I want this nightmare to be OVER! 


Ok. No need to tell me I'm not a poet. I know! But it's the first thing that came out when I put finger to ipad. I am frustrated beyond belief because I had such hopes for Ashton returning to theatre this Friday. I had high hopes for a little bit of finality, a little bit of closure. But if was not to be. There are not enough beds available and no room on the lists for the procedure to happen this Friday.

So, there will be more waiting and more hoping and more praying that her current good health stays with us. We will distract ourselves with thoughts of her 21st party which is scheduled for the end of this month. And I will distract myself with menus, balloons, gifts, cake and an increasing guest list. This is going to be a great party, not just for the birthday girl but for all of us. Everyone on both sides of the family needs a good party.

Waiting is not something I'm accustomed to when it comes to health issues. Luckily I have always had private health cover and been able to choose my own specialist and be seen quickly. But Ashton's treatments have been in the public system because for her condition that's the best place to be. And so we are constrained by lists and budgets and beds and availability of staff etc. It's not fair is it? It's bad enough having any medical condition, without having all that put on you as well. I wonder if people who allocate budgets have ever had to wait for medical treatment before. Bad enough if it was for me...hell that it's for my child. And double hell if that's the only system you can afford to be seen under.

The husband has returned to Geraldton to replenish the bank account. It's hard being separated like this but Ashton can't drive herself at the moment and so I stay. Ciara starts university next week! Sound the trumpets and blow the horns. It's going to be another big year for my budding actress as she undertakes a certificate 4 in musical theatre at WAAPA - the west australian academy of performing arts based at Edith Cowan university.


Till next time...xxx

ST

Friday 6 February 2015

WAITING, WAITING AND MORE WAITING

So, we're here at the hospital and so far we have been here six hours and still have not gone to theatre. My poor girl has not eaten or drunk since 8 pm last night and is now fast asleep out of pure exasperation.
                                
The doctors came in to see her hours ago and explained the procedure over and over again. I wish I could put my hands over Ashton's ears when they start talking about the risk of stroke, paralysis and death, but I understand it's something they need to do. I understand it really but I don't want to hear it.

We have one new doctor. Bertie beetle aka Dr Albert has moved on and that makes us all sad because he is a lovely doctor with great compassion. His replacement ( or the new model as Dr HS calls her) is a polished female doctor with a beautiful English accent. She will of course require a nickname and this will come with time. The main doctor remains the same, though slightly dishevelled which is unusual for him. That's what happens when you have three kids!!

Life in a hospital continues to fascinate me. You just get all sorts. I sat at lunch willing myself to say nothing when a woman was trying to feed a very young baby solids. Her friend was shoving spoonfuls of something into another child's mouth. The noise from both children was unbelievable and my shattered nerves couldn't take it. Mark and I just left.

Two orderlies nearby are having a very exciting conversation about whether a certain orange chair belongs in one place or another. Oh my goodness, it's the end of the world because it should be in the female change room not the males. Scintillating conversation! The excitement is killing me.

The nurse has just put Ashton on Iv fluids as it's been ages since she had anything to drink. The hold up is an emergency, as usual. I know it needs to take priority. I would want it to take priority if it was my family BUT please God make them hurry up. It's been too long a wait.

Got to go. An exciting conversation about the cups in the kitchen is breaking.

BRB
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