New Life, new me. Time for a fresh start...

I read so many interesting and inspiring blogs that sometimes I get disheartened that I could never write anything as thought provoking or interesting as some of the people who inspire me. However, I have decided that this blog is going to be more for me... somewhere I can put my thoughts down, and be able to look back on later. If people read what I write and enjoy it or find it interesting, then that is merely a bonus. If I write from the heart, without worrying about what other people think, then I will be less restricted and more inlined to actually maintain my blog.

I know its been quite some time since I last blogged, but since there has been quite a few changes in my life in the last few months, and so I decided that now might be a good time to restart my blogging journey.

Since I last wrote on my blog, my daughter has undergone surgery to have her vesicostomy reversed, and also had bilateral ureteric reimplantation. Whilst all signs were good at the beginning that she would be able to 'wee' sucessfully on her own, she showed signs she was unable to empty her bladder fully in one go, but was rather just doing little bits. Because of this, I am now doing intermittent catheterisation with her 3 times a day. She has adapted to this very quickly and easily which has made the process a lot easier to deal with.

I have also started to attempt to toilet train her, as I figured that she would be more aware of sensations 'down there' now, as she has never really experienced those feelings before. This is a very hit and miss process. We haven't had a lot of success with keeping knickers dry (as I mentioned she tends to do lots of little bits) but she has successfully been able to use the toilet on a very regular basis. We just need to try and catch her BEFORE it goes in her pants, which is hard when she seems to go every 10 minutes! Hopefully we will be able to teach her to hold on for longer so that she can just do it all at once, but that is a matter of 'wait and see'.

With everything that is going on Little Miss E, it has caused me to reevaluate a lot of the things in my life. There have been a few instances of late that have caused me to question some of my so called 'friendships' and whether they are in fact worth maintaining. As a result, there have been quite a few people with whom I have decided to severe ties with as they create far too many problems and dramas, and quite frankly, I have far more important things to worry about, and watching my back shouldn't be one of them.

Life is too short to worry about little insignificant things.. family and those we love are the most important things and that is where my focus will be from now on.

Our vesicostomy journey is coming to an end - YIPPEEEE

A few nights ago, when I changed Ebony's nappy, she was wet down the bottom (where wee is supposed to come) and only a little wet where her vesicostomy is... which is a sign that the bladder is starting to function properly on its own again! I was soooooo excited! I was doing a happy dance around the house!


I took Ebony to see Professor Dewan (her Urologist) today and told him that she had the wet nappy the other night where its supposed to be wet, and he was just as happy about it as me!

He said that this means he can now close her vesicostomy as it means that her bladder has started working on its own again.

We have to go back and see him at his clinic in Geelong on 15 October so that we can go about organising getting her booked into hospital so that he can perform the surgery to reverse the vesicostomy, and also do the bilateral ureteric reimplantation.

He originally told me before she had her vesicostomy operation that once she was old enough, it could be reversed and I would have to catheterise her myself 4 times a day to drain her bladder manually. However, when I asked him about it today he said that as long as everything goes well, I shouldn't have to do that now because the bladder is now starting to work on its own again.

YIPPEEEE!!!!!!!!!!!!!!!  I'm sooooooo happy!!!

An apple a day keeps the doctor away? I think we need more apples!

My little girl Ebony has been through so much in her short life so far.

When she was 8 months old, she basically stopped growing. She completely dropped off all the growth charts and was classed as Failure To Thrive (FTT). She went through countless blood tests and doctors appointments, was seeing paediatricians and nutritionists, but nobody could seem to tell us why she was not growing.

When she was 10 months old, our paediatrician decided to do a simple urine test to check for a UTI (as this can apparently be a cause of FTT). Low and behold, we discovered she did in fact have one and she was immediately placed onto antibiotics. Problem solved? Unfortunately not.

As soon as one course of antibiotics was finished, she would get another UTI. The paediatrician decided to keep her on a prophylactic dose of antibiotics to try and prevent the UTI's from recurring, however, she was even getting breakthrough infections whilst on the antibiotics.

In late November 2008, she came down with a UTI so severe, it spread to her kidneys and she was hospitalised with a kidney infection for 4 days.

We were then referred to Professor Paddy Dewan, a paediatric urologist and surgeon (and to us, a Saint!). After countless renal ultrasounds, xrays, DMSA and Mag 3 scans, a cystoscopy, and an operation called a urethral dilatation, he discovered that Ebony has Grade 3 reflux in her kidneys on both sides which was why she kept getting infections, as well as permanent scarring. This would require her to have an operation called ureteral reimplantation.

However, he also discovered she had a trabeculated bladder. Basically, the muscles of her bladder were so overworked from all the infections that they had stopped working and she was unable to urinate properly. Unfortunately, due to this, he was unable to perform a ureteral reimplantation as it would only make the reflux worse, and she could not risk any further damage to her kidneys.

He decided, the best course of action was to perform a vesicostomy. In simple terms, a vesicostomy is an operation where they make an opening below the belly button to allow the bladder to drain continuously  from this opening into a nappy (or into a special bag in older children) This allows the bladder muscles the opportunity to heal, and prevents urine from travelling back up to the kidneys and damaging them further.

She has now had her vesicostomy (or stoma as they are commonly referred to) since January 2009. We do not know how long she will need the vesicostomy for. It could be years. We do know however that she still has at least 2 more operations ahead of her (reversal of the vesicostomy and the ureteral reimplantation). On the positive side though, she has not had a single UTI since having it done! Her weight however, continues to be of concern and is being followed up with the paediatrician.

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It has been over a week since I last posted on my blog, but that is with very good reason. Every day last week was spent attending medical appointments, visiting doctors, and even included an overnight stay in hospital when my 4 month old daughter, Melody, was admitted for treatment for a suspected UTI (urinary tract infection). This was a rather scary time as I was having a major case of deja vu.

Her child health nurse was concerned as her weight appears to be dropping and so she recommended I take her to my local doctor to be tested for UTI. 

I took her to our local doctor on Thursday and he did a simple dip stick urine test and detected some anomalies. He then advised me to take her to hospital for a more accurate test to be carried out.

The doctors at the hospital agreed that something was not right, however were unsure if it was in fact a UTI. Due to Ebony's history of renal issues, they did not want to take the risk of ignoring it so they admitted her for antibiotic treatment via IV drip. They also took some blood samples for testing (which we are still waiting to hear of the results). 

The following day, they said I could take her home and continue treatment with antibiotics as they felt she was more at risk or catching something else from the hospital as there are a lot of nasty things going around at the moment.

She appears well so we are hoping that it was not a UTI, or that if it is, we have nipped it in the bud.

Unfortunately, our medical issues seem to have spilled over into this week as Ebony is now unwell. She vomited on Sunday evening, and then again this morning (all throughout my car!) I was hoping that the episode on Sunday was a once off and would just prove to be a 24 hour bug, however, after this morning, I'm worried she may have picked up the nasty gastro bug which is currently doing the rounds... which in all honesty would not surprise me given how much time we spent in doctors surgeries and hospitals last week!

I don't think she has a UTI (at least I'm praying its not), but if she is still unwell tomorrow, I'll be heading back to the doctors again! Think I need to reserve a personal parking space... or at least ask if I'm entitled to discount parking!