Thursday, October 18, 2012

Going Nowhere FAST!!!

To say the last few months have been tough is pretty much an understatement.  Aerynn's 1 week re-admission to the RCH ended up with another 3 week admission, more intensive tests but again, no real answers for what IS going on.  We were able to rule out a few nasties such as Meckels Diverticulitis and physical bowel obstructions or bowel deformities, but no explanations as for what is happening inside her tiny little body.  So in the last 8 weeks, 2 were spent with an extremely ill little girl and running around the countryside for appointments and tests, and the other 6 weeks as an inpatient at the RCH, almost 500kms from our home and family undergoing all kinds of tests and procedures trying to get answers, but coming away with none :(  We are trying our best to see the positives and make the best of this situation, but really as much as things are being done we feel we are (as my title suggests) going nowhere fast...


Out and about with "Larry" (the drip machine)  
The mundane laundry and the aquarium (which Aerynn LOVED!!!)

 She is STILL spilling fats into her stools on every test, but they immunologist doesn't seem ready to investigate malabsorption just yet, however the consultant said he is not ruling it out at.  Her liver enzymes are rising and on tests are highlighted as being too high - this really concerns me.  As much as the liver is an amazing organ which can repair and regenerate itself, to have it in distress as it seems to be with no answers as to why is a little disconcerting as a parent who can do nothing but watch those levels rise - a good thing though is her biliruben levels have dropped back to 0... 

  Watching the Grand Final - 
Yay the Swans won!!! 

Aerynn is still passing undigested foods into her nappies within hours of consuming them.  Sometimes with no stools around the food - kinda gross, and totally not normal!!  She had another bout of blood in her nappies in the hospital, however her colonoscopy and gastroscopy that the gastro team wanted to perfom and we approved were cancelled and have not been done.  This was VERY frustrating.. to have her on a drip and fasting for the whole day and get nothing out of it :/  But what can one do when they are at the mercy of the hospital system and hospital politics **sigh**

We had a dairy trial in hospital as well.. trying to wean her onto a cow milk based formula... Not very successfully though...  Lots of pain, bloating, tears and poopy naps!!  I tells ya!!  When her system is upset it is UPSET!!!  12 poopy nappies one day, 11 the next.. then we called it quits to the trial as we were returning home to move and I wasn't able to cope with the whole intense reaction thing as well as searching for a house, moving and caring for 5 children at the same time as getting no sleep as Aerynn was in pain all of the time... 


Celebrating Domeniks 4th Birthday at the RCH.  He was devestated mummy wasn't at home when he woke up on his birthday morning so they drove down to Melbourne to visit!!

I know there's more I could add as to what happened during the admission, but to be honest I'm exhausted.  I needed to get this post in otherwise I know it'll be a few more weeks before I get the time to sit down and really think about the admission - which to be truthful I don't want to think about all that much.  This last admission to the RCH was marred by issues not relating to Aerynn but I found that some support I was clinging to really wasn't there and disappeared into the distance when I tried to steady myself and find the strength to go on.  I didn't expect to be attacked and left isolated the way I was, especially while in hospital so far away from my support network but I learned that maybe it is better at times to be certain in your own strength than in hoping that others around you may be able to help hold you up.  We've learned, we've hurt but we've grown and know we have the strength to face this all, if need be face it alone...  

 Aerynn LOVED taking self portraits on my iPhone :)  
She's really starting to look like a little girl, losing those baby features **sob**

In the meantime we are HOME!!!  Well, what back with the family ;)  Home will be re-locating in the next couple of weeks back over the border to SA ;)  But we're out of hospital.. back to the "normal"  Aerynn is still on neocate advance (vanilla flavoured), pear and chicken.  We are going to try and introduce wheat into her diet when I am game enough...  It may be soon as she is starting to reject the pear and chicken (It is rather a boring diet LOL)  No dairy for 3-4 months according to her immunlology consultant who says she is having an allergic gut reaction (previously known as intolerance), not an IgE reaction to it.  

 Lots of smiles...                                                            and tears...

So the immediate future also throws up more appointments for us... Warnambool Paed sometime in the next week, Back to Melbourne for another immunology consult on Nov 2, Geneticist in Warnambool Nov 24th then back to the paed before Christmas.  In January Aerynn will see the gastro consultant and we will start looking into why she is having these blood episodes in her nappies and investigate the possibility of malabsorption.  It's more than likely going to result in more admissions to the RCH apparently but if we can finally get answers I'm ok with that...  Answers or at the least explanations are all we are needing to know where to go, so we have somewhere to aim in her treatment and prognosis for improvement.

Falling asleep waiting for nanny 
to answer her facetime call...

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