Friday, 16 December 2011

Disney is key!

I haven’t posted in a couple of weeks!  Amber had her 7 day heart monitoring and we haven’t heard anything as yet, although we had the clinic letter which I would say has sent the shivers through me to say the least.  I think however, because it is the fear of the unknown, for the last 6 years it has been neurology so the heart thing is all very very new and I definitely feel out of my depth.
She is up and down health wise, and it really is a mystery.  I am lucky in that I have a wealth of knowledge through the touch of a button, the Neurologist, the Geneticist, and even today the Specialist Geneticist that is instrumental in informing medical practice.  So today I called him at his request and as he always does he eased my pain, and to quote him “keep an open mind”, its refreshing is it to hear that from a world leader in his field because in the Medical profession this is not innate.  However, again, somehow he has brought me back to focus!
On a personal level, however, this week has seen the mini make-over of Ambers bedroom, she has grown from a baby, and is now a young lady.  However the clearing of her things, her baby things, her toddler things, was somewhat emotional.  Well huge and irrational emotions came to light.  I mean I blame Disney! As I tossed some of her first cuddly toys on the pile, I started to think, well actually Hedgey Hog was the first toy she loved and loved to bite, and pick-up, and princess doggy we loved to snuggle her at her face…….. So yesterday was a blubbery day, I couldn’t help the tears as I delivered two bin-bags of clothes and toys and belongings to the charity shop to hear the lady say “a little girl will be so happy to see all these things”, my little girl had all those things, they may not have made her happy because she might not have known the significance.  I wanted to scream that my child was special, because she is, but I left with a heavy heart, as I wanted to share it all, but I will, believe me I will, when this season is over!  Amber and I will walk into that shop and show them what happiness is! 
But you know, every Christmas as sad as it is, that I am not buying her dollies and Sindy dolls, is that she brings me the best present ever, her love, and her smiles, and unconditional love forever J  What a fantastic Christmas present I get, and its every day!, my heart is bursting. 
Merry christmas to you all. xxxx

Monday, 5 December 2011

My Precious Heart

I haven’t posted in a week or so!  Because there was something that happened last week that had me stopped in my tracks. 
We went for a follow up appointment from some extensive investigations that happened in September during a two week admission in Bristol Childrens Hospital which involved every system in Ambers body, ie neurological, gastrointestinal, respiratory, cardiac, and dietary!.   There was nothing that could have prepared me for what happened next!  I thought I knew everything about Amber’s health problems, and although I requested a cardiac work-up, I left the appointment in a daze of shock and disappointment.  When we arrived at the clinic Amber was given an ECG and an Echocardiogram, an Echo is a procedure that looks at the structure of the heart, the blood flow, the thickness of the muscles etc using ultrasound technology.  I already knew that Amber had a small anomaly that I was told about by a nurse when she was two but was told that a lot of the population live with it, and that unless she was going to be a deep sea diver, which she wasn’t, then there was nothing to worry about.  Except what I was told last week, is that in fact, she has a hole in her heart, and not what was originally thought.  Amber also has an anomaly in the beating of her precious heart, and at times her heart beats extremely fast called tachycardia.  We are lucky enough to have a great cardiac consultant that listened intently to the clinical history given by me about Amber, and was also interested in genetics and cardiovascular problems.  He was pumped! Excuse the pun….. to ensure that he gets to the bottom of her problems.
Although I asked for the referral and testing it came as a shock that we were adding Congenital Heart Defect to her list of conditions.  It felt strange that no longer was I liaising with Epilepsy Nurse specialists, but was also being given information about the British Heart Foundation from a Cardiac Nurse Practitioner.  What makes me angry, however, is that earlier this year, when these cardiac symptoms were at their worst I was seen as slightly neurotic by the local health team at our regional hospital.  I am desensitised to her extreme seizures, as I have said in a previous post, but when you walk into your child’s bedroom, in the middle of the night to check on some weird noise that she has made, and you peak through her bed sides, to see that she is staring at you, eyes wide, and not moving, and you fear the worst………. The shock is horrendous, and you look intently, stopped in your tracks, till you see her breath.   In July Amber was admitted to the local hospital for 36 hours of cardiac monitoring, following some of these uneasy events, but the monitoring was not followed up, nor was it reported on, in fact it was lost in the ether of wireless cardiac monitoring in our local hospital.  I remember at the time telling the doctor, that if I didn’t follow it up and god forbid she died from a cardiac event and I hadn’t investigated it I would have never forgiven myself, as strong as I am, I would have felt I failed her.  But they failed me as a parent, and Amber as a complex child, I feel they humoured me and didnt treat me or my daughter with the basic level of care that should be expected.
Thankfully, again, I have been given the respect, as a parent expert in my child from our specialist centre.  She is now under the radar of cardiac services, and even if there is nothing that can be done, she will be continued to be monitored probably for the remainder of her life.  We now know that if she ever has to have an operation she will need anti-biotics prior to prevent Endocarditis, a rare but serious bacterial infection of the lining of the heart.
Today I received an email from the Neurologist, saying simply “Amber keeps teaching us all the time!”  Amber certainly does, she has taught me to listen to my senses, listen to my intuition, and to never give up.  She teaches the medical profession to look outside the box, for those that are able, which isn’t always easy!  She certainly does have a precious heart, even more so now than ever before.