"Sometimes the hardest thing and the right thing are the same"
If only we could make things right..
I wish I was sick so you would spend time with me. again I try to make my five year old understand how much I also miss our special time
together, although we must all work really hard to try and make Piper better. A few days earlier and Willow had said she did not want her sister to die and again I am so confused about what to say. Our bright eyed little girl hangs on every word as we try
our best to explain, we love our girls so very much and will do everything possible so that this doesn't happen.
We continue to plea, just allow us a day free from the seizures that capture seconds and minutes taking abilities away for hours and days.
Please let her body rest from the choking, coughing and straining. Please grant her a day without pure exhaustion...
This precious little girl so eager to gain control, her eyes willing her limbs to move. All she wants is to be a part of this moment,
a part of this day, although today's strength will not allow this little ones head to rise.
We kiss a little mouth which remains still, eyes flicker in acknowledgment My heart breaks for our little girl lost, and also for a little girl who feels so completely
left out when specialist appointments take us 600km away.
Today we travel home from Melbourne once again looking forward to returning to our now very big school girl and hearing how the first full week of school went along with her first gymnastics lesson.
We return home with our precious cargo little miss Piper.
Four specialists revealing more of our reality, our developmental paediatrician begins the conversation on the evidential reality of pipers choking.
The concern now is Piper is no longer
remembering how to swallow secretions the choking the coughing are all quite obvious sign of deterioration.
I explain that there are horrendous days when piper does not move from the suction and nebulizer although days that aren't nearly as bad.
The
Drs concern now as with our gastroenterologist two weeks prior is the chance of fluid forming on the lungs. As piper continues to loose control of her swallow, choking on just a few drops of water placed on the tongue deterioration appears evident.
Another
new medication prescribed this time to aid in reducing saliva. The hope this may again assist Pipers choking and reaching issues along with additional medications starting last fortnight.
The second option as previously mentioned in severe cases and where
medications fail is an operation known as fundoplication surgery. This is where the upper curve of the stomach is wrapped around the oesophagus and sewn into place, so that the lower portion of the esophagus passes through a smaller tunnel of stomach muscle.
Of course this operation has risks some experience constant pain, the discomfort of feeling bloated, unable to burp or vomit, this procedure is irreversible. Although in saying this for someone so severe the odds must be weighed. The Dr then asking the question..
Would we put someone like Piper through this surgery when deterioration is evident? The room is silent ....
Our Doctor continues, if we decide no it's an indication of a time frame.
She states "a decision is not expected to be made today, we are
making some really heavy decisions here, In the next few months to year Piper will direct us, if we haven't any answers, if we are no closer Piper will tell us what she needs. It's a lot to take in and not everyone would be as direct as I."
We appreciate
the honesty and begin to fire questions in return, There may not be a diagnosis but is this something you've seen before? Is there a similar pattern?, Do you have an indication as to where Piper is heading?
On the first meeting with Piper our doctor
had believed it may be possible for Piper to just have a intractable epilepsy (too strong for medication) although as time has passed and deterioration occurred, it's most likely this is a type of neuro degenerative disease as our Dr explains why, I sit silently
as Michael replys yep yep! This being for almost every answer.
So..if had the choice what would she do? research? treatments? I'd take Piper on a wonderful family holiday, enjoy her and make it the best possible time for her. As asked we received her
honest opinion and on leaving she shakes our hand, quietly asks if I'm ok and gently touches my shoulder.
We explain to Dr Kate our thought process and the way our outlook and opinions have grown to change over time. She can see we have changed from who
we were two years ago. We explain our similar conversation with Ingrid and the adjustments made to consider Pipers deterioration even without the seizures, it's a hard reality although one which must be faced.
As we stand in the lift on our way to a following
appointment with the Murdoch Children's Research Centre Michael turns to ask: Is your head about to explode? Our minds are racing, its a look and a conversation we seem to have too frequently these days.
We are now at the research centre to discuss Pipers
upcoming liver and muscle biopsies and as we have had little to do with the metabolic team of late we are assured they are continuously involved in the discussions of Piper. This invasive test now required since bloods, lumbar punctures and urine have all
displayed negative results, however a mitochondrial disease can not be ruled out.
The neurosurgeon and gastroenterologist will both be present during the operation, a metabolic research member will transport the samples and ensure a smooth transition
to the lab. From there a complicated story we pray may unfold, perhaps a name for this god awful disease.
Next we are sent for another X-ray this time concern for Pipers hips as they are not bearing weight, it is common for bones to move. This just
a precaution.
The Scoliosis department will continues to monitor Pipers curvature of her spine and although at this stage a plaster jacket would be used to aid correction. It's a bitter sweet situation that for now we've managed to avoid months of plaster,
the scoliosis team also uncertain if putting Piper through such torment is worth making her feel uncomfortable.
Finally off to see the gastroenterologist and we have some good news :) The site has improved all now more than happy with the result. We
were taught how to remove and replace the mic-key button, which is quite a lot easier than replacing the nasogastric tube Piper did not flinch! although I admit witnessing stomach contents burst from quite a large hole in my daughters stomach took a little
getting used to. :/
It's nice to have this confidence should emergency replacement be necessary.
Our last appointments saw Piper fitted with AFO's, without a tear I might add! :) Slowly we'll work towards keeping those ankles straight and
in return muscles comfortable.
For all that we have put you through, we only hope you know its because we love you. If we could we would take your place through all the trials and testing sadly we can only agree to let people inject you, take from you
and learn from you. We can not fight for you although we'll continue to fight with you, you are our precious baby girl and we are so privileged to care for such a beautiful little soul.
Never give up hope for we'll continue to fight like we always have
together x