We’re now almost finished week 2 of Aerynns hospitalisation. The “one week” has blown out to “at least 3 weeks” now. We’ve had some success with her now starting to tolerate neocate advanced (vanilla) quite well… we had some rocky days to start but now almost back to our cheerful little girl J Yay!! Pear so far has been tolerated for one day, as has (surprise surprise!!!) chicken! Pumpkin however didn’t fair so well and we are re-challenging it next week over subsequent days to see if her reaction is a true intolerance or just Aerynn having an “off” day. We FINALLY got a clean catch urine from her to test for UTI’s. It’s only taken several hours on end on a daily baisis sitting with our little Miss nappyless waiting for an elusive wee… it seems Aerynn wont willingly empty her bladder without a nappy on her butt LOL As funny as that is we ended up having a failed catherterisation and SPA (needle through the belly direct into the bladder) in an attempt to get a sample. We avoided a re-attempt at the catheter and needle by 15 minutes!!! Was a HUGE relief that’s for sure.. and for all that time and effort she has tested negative J
Anyways the biggest news I guess is that we have a new suspect for what is happening inside our little girls body. And it’s not the best suspect out – in fact rather more of a Villain.
When her initial blood and stool samples were tested in Warnambool, so many months ago, we were assured that she was negative to several things, including caeliac disease and cystic fibrosis (http://www.cysticfibrosis.org.au/aboutcf/). This week however Aerynns stool sample has showed that she is not processing fats. In fact her little body is spilling fats into her stools (poohs for those who were wondering). This is most certainly not normal. In fact it’s raised a few very serious concerns when coupled with her other symptoms of failure to thrive, excessive sweating (which is salty so I discover tonight after kissing her while she was sleeping) excessive mucous production and malabsorption issues. Combined she is re-raising super bright, flashing neon signs inviting the words “cystic fibrosis” back to the table.
Even though she had a heel prick test (Guthrie test) at 3 days old and has previously tested negative to CF apparently there are a small percentage of kidlets who are kind of like “sleeper bodies” when it comes to CF. They don’t start to show signs until a little later in their babyhood. It is suspected that Aerynn may be one of these little “sleepers”. TO be spilling fat into the stools is a huge sign for CF. In fact CF is the most common cause for this to happen so I’ve been advised – mind you I was in shock when the gastro specialist came and told me all about this after previously wiping CF from our minds…I remember asking what if it isn’t CF, what are the other options. Apparently there are other rare syndromes that may account for it, but from what I can gather their not that much better than the CF diagnosis. There is a very small chance that she may be spilling fats due to a change in her diet, however as she has not had any increase in fat intake and coupled with her other symptoms we’ve been told to prepare for this diagnosis.
So these last 36 hours have been extremely emotional for me in particular. I really feel we’ve been kicked in the gut. We were looking at a probably diagnosis of RSS which although life changing has no long term health implications to CF which, as most would be aware, has lots of health complications and can be life shortening.
Tomorrow at 9am is our sweat test. This is the diagnostic tool for confirming or ruling out CF. A little metal cup like device will be put on Aerynns arm and for approximately 6 minutes a small current will be passed through it to stimulate her sweat glands. Then we are to have her rugged up nice and warm and try to make her sweat as much as possible for the next 30 minutes. Knowing Aerynn that wont take too much effort LOL We’ve done a sweat test 11 years ago with William, he was obviously negative – but then he also doesn’t have the issues Aerynn has with sweating, malabsorption size etc etc…
To say we’re scared is an understatement. I know we’ve been told to be prepared for a diagnosis before, but this one for some reason has really rocked us. It really didn’t help that the morning of the Gastro specialists visit I woke with the song “Sixty Five Roses” (CF awareness/fundraiser song www.youtube.com/watch?v=Mksi0KI6AiA) in my head and visions of the episode of A Country Practice that featured CF dancing in my dreams… Was my subconscious trying to tell me something Guess time will tell.. but for now it is 2.27am the morning of Aerynns sweat test and sleep is eluding me… my brain is going a gazillion to one and the scenarios playing out aren’t things that should be going through a persons head before they go to sleep… Guess I have to though… have a feeling I’m going to be needing all my strength to get our little one through the day….