If I Could Turn Back time....

If only I could find a way....

Honestly, I know it's cliche but I don't want to go too far back, just a few days, mere hours in the scheme of things...  But I can't.

They say knowledge is power... at the moment I'm saying ignorance is bliss... Well was....

We finally got some blood sugar test strips for Aerynns BSL meter.  We tested... and tested again... and again... and again... 

I don't know what it means in the long run but Aerynns blood sugars are swinging.  They're not showing the dramatic lows we expected.  Rather lows here, lows there and what surpised us all is highs! She is recording levels that hang around 6.6-7.9's most of the time, they have dropped right down to 3.2 and 3.5 on a number of occasions and then soared up to 10.6! It probably doesn't mean much to most people.  I thought our first reading of 6.1 was good (I even posted on facebook at how happy I was at that reading for a midnight read 5 hours after eating) but apparently blood sugar levels should be under 5.  I was celebrating a slightly high reading *doh*

I spent most of Thursday and Friday on the phone (or more to the point waiting on call backs!!!) to Aerynns GP and Paed trying to work out where we are going from here.  Her GP is quite concerned and wants her to be seen ASAP, her Paed appears concerned as well and would like her seen by an endocrinologist whilst we are at Melbourne in a couple of days.  I don't know if that is going to happen though as time is running out in getting an appointment. 

So for now we continue to test, log, notorise EVERYTHING - as in sniffles, sleeps, food, drinking, headaches, listlessness, over-excitements, injuries, upset, tantrums etc etc etc.. basically anything that can have a result on blood sugars needs to be recorded as well as her tests.

It breaks my heart to hear her say to me "no sorry" after I kept apologising every time she cried after pricking her finger or toes...  It's tearing me apart that she knows what pain is, even though it's little pains, it's discomfort a child shouldn't have to know.  She has started to hide her hands against her body when she sees the test kit come out.  Life shouldn't be like this but for so many kidlets it is.  And I am hoping that Aerynn wont have to worry about it too much longer, but for now we trudge on and try to work past the emotional side of that something like this brings with it.  I'm trying not to worry but take each day, hour, minute etc at a time.  Hoping that this is just a little hiccup and something that can be sorted out nice and easily...

Wishing I could turn back time to when Aerynn had no idea what a lancet was, or what a drop of blood is or that her mummy is ever so sorry she is having to hurt her... wishing I could turn back time to when we simply thought there was something "odd" not thinking that anything would really come of it... back to a time where I had no idea that 6.1 was a slightly elevated BSL result...

Turning back time is not possible.   We have results now so ostrich syndrome (AKA sticking head in the sand AKA ignoring the problem and hoping it will go away) is no longer possible... 

Wishing I could turn back time, knowing I can't and feeling relieved that these symptoms aren't in my head, I'm not exaggerating them and knowing that we may have some answers soon, but at the same time incredibly scared that these answers may have long term implications and other health complications.

If only I could turn back time...

Ignorance is bliss, knowledge is power... but with knowledge comes responsibility...

**scared**

Something's not quite right...

I'm sitting here with my heart in my throat deeply worried for our little girl.

October 6, 2013.  Aerynn in the paddock behind our house in Nangwarry, South Australia

Something is seriously not right with her and to be quite frank I'm almost too scared to let my exhausted brain out for a wander to try and work out what it is.  I'm falling back at the mercy of the doctors now.  Aerynn has developed migraines, disorientation and generally not being "with it"  She swings from being happy and "normal" one minute to pale, clammy and unwell the next.  She can become aggressive when in the disorientated phases and start vomiting during them and become incredibly distressed.  She has no control over these changes.  I have no control over my fear of them. 

Right now it is 10.43am on a sunny Friday morning.  Aerynn woke at 6am, disorientated, pale, screaming.  She crawled into our bed and had 450ml of her neocate and then started becoming super aggressive towards me and Toby.  10 minutes later she calmed down and fell asleep.  She slept there for 35 minutes, woke, finished off her sippy cup (approximately 250ml more neocate) and went straight back to sleep.  Since then she has awoken 2 more times, grizzled, cried and fallen back to sleep. she is now onto "nap" number 5 for the morning.  She has no temperature, her cheeks are now pinking out but otherwise I can see no reason for her needing to sleep when she usually only has an afternoon nap.  I'm worried. 

Luckily we have a doctor appointment this afternoon...

This mornings activities are becoming more and more frequent.  She is still waking around 3 times overnight for sippy or just a snuggle and resettle. 

Since recovering from her measles (which took almost 2 weeks to clear all the spots and symptoms!!) Aerynn's health has not really picked up.  I can't pin-point exactly what is wrong which is why wen we saw the paed last week I was certain she was going to say it was just me, I was depressed or seeing things or just a mental case.  Honestly, I was prepared to be told it was all in my head.  Instead she looked at me and said that it is real.  Something is going on with our little girl. 

At the moment we are suspecting she may be getting the headaches due to possible hypoglycaemia.  Basically low blood sugars.  It shouldn't happen in a child but sometimes it does.  She said there may be no reason for it, it could just be another "it's just Aerynn" situation.  We have purchased a blood glucose monitor so we can start testing her during the day to keep an eye on her and see if there is any patterns emerging.  When he gets disorientated and headachey we have to test her and I will also be testing night and morning.  The other possibility on the table is epilepsy.  We have epilepsy on both sides of our family.  Nathan (Aerynns daddy) had epilepsy as a child so it is a link.  I don't really want to think of what other options there are that could explain her current situation, these two are enough to be sending my head in a spin!

Now blood glucose monitors, testing strips etc etc are a little bit of a headache.  Because we are not looking at a diagnosis of diabetes only possible hypoglycaemia we do not get any subsadies or private health reimbursments.  Even though we have private health and it covers meters and the peripherals that go with them unless we have a formal diagnosis of diabetes we will get no assistance.  It really suck!  I know $50 for a meter isn't that bad, but the ongoing costs are huge!  It's $65 for one box of 100 test strips.  Considering we will be testing her 3 times a day most days, and at least twice a day - not to mention if she has an "episode" or we make an error etc etc, one pack of 100 strips is going to last an average of a month.  We are also monitoring her ketones as this could be an explanation as to why she has been dropping weight so dramatically when she has been sick.  We got a specific monitor which also tests ketones, and the strips for these are $9 for 10.  I can see if this is an ongoing thing for her that it's going to be a very expensive excercise.  the ironic thing is if she was diabetic the strips would cost us $2.10 for 100 - the ketone strips are not subsidised but I'll not complain at a $9 hit if we were only paying $2.10 for strips - it's a big difference to the $64!!! add to that all her meters, lancets and the ketone strips would be reimbursable or at the very least partly funded via our health insurance.  We are so blessed in the fact we have friends who are able to help us out with getting us strips for her meters though :)  Also dip sticks so we can see if she is dropping ketones in her urine before using the blood ketone strips.  I honestly don't want to think where we would be trying to fund this if we didn't have these friends and family to help - so if you're reading this THANK YOU!!!!

Besides the "I can't put my finger on it" illness, Aerynn has also been diagnosed with having an inguinal hernia.  I also suspect Dommy to have one as well just to join in the fun I'm sure :/  So to add to the pile of everything we are now awaiting on seeing a general surgeon to organise surgery to correct this.  It will either be done in Melbourne or if they can't fit her in in Warnambool on their 3 monthly visiting roster.  She is already having issues with the hernia bulging quite dramatically at times.  So far it has reduced ok, but the issue is where we live if it doesn't reduce and becomes a medical emergency then we have to fly her to Adelaide for surgery.  There are no facilities here in Mount Gambier (which happens to be the second biggest city here in South Australia) for children under the age of 4 to be anaethetised.  We have no paediatric services other than basic band aid repairs...  It's a little daunting to be honest.  But something the locals have been accustomed to so complaining and fighting for better services seems fruitless.  Just a grin and bear it kind of thing. 

October 6, 2013  Aerynn catching bubbles.  30 minutes later she was flat, listless and low :(

Soooooo from here, GP this afternoon to see if we can rule out anything causing Aerynns current sleepy nature.  Waiting on Mr Postie to deliver some blood glucose test strips and off to Melbourne in 10 days to see the gastroenterologist and hopefully general surgeon.  Possibly an admission to have a hernia repair - we wont know until we get there!