Wednesday, September 19, 2012

Back to the Chateaux...

Aerynn is going to be re-admitted to the RCH this weekend for more tests and hopefully getting some answers heading in another direction.  She is to (hopefully) have a barium meal tomorrow and then follow up with the paed in Warnambool on Friday and off to the RCH for at least another week on Sunday.

I'm kinda concerned with the speed in which all this has been organised.  In the space of 2 hours apparently the paed and immunologists had organised all this.   I'm kinda expecting them to say there was more blood in Aerynns stool sample from Warnambool as her samples have becoming increasingly darker to almost black and smell metallic.  In a way I hope it's that as it's a definite indicator something is going on and it's not all me saying it is, but another way I hope not because as muh as she is having these episodes I don't want her to be really sick.  Probably makes absolutley no sense hey ;)  Anyways kinda scared, kinda relieved but mostly feeling rather rushed... 

Tuesday, September 18, 2012

Our Stay at Chateaux RCH

One week became 3 once we were admitted to the Sugar Glider ward at the Royal Childrens Hospital in Melbourne. 

We had test after test but ultimately walked out none the wiser with what is really happening inside our little girls body.  To say we're disappointed is an understatement.  Again I think I set myself up to expect too much :/ 

Aerynn was subjected to skin prick tests, food challenges, several blood tests, stool samples, failed SPD's (needle into bladder for urine tests), failed catheterisations (again for urine tests), a sweat test, full body photography, nurses who refused to take note of her symptoms, nurses who didn't check on her during the night when I was up all night caring for a screaming baby, Nurses who were bloody brilliant and would always ask how Aerynn was when we passed in the hallways....  We had it all!!!  And the food... well...  no comment!!!  LOL

We saw genetecists, gen med paeds, gastro paeds, immunologists and allergists, nurses, nurses, nurses...  pathologists, photographers, social workers and student doctors who wanted to use our complicated little Aerynn as their "research subject" 

Out of it all we know she is NOT allergic to any of the foods we suspected.  Why she has developed hives, urticaria etc to them we do not know.  She did not return a single positive SPT which floored us.  She did however fail two foods she was trialled on (beef and pumpkin) and showed intolerance signs to some others but we're to plug on with those and help her reaction improves (egg, yoghurt, bread and banana) She is showing signs of malabsorption with fat globules and crystals showing in her stool tests - the Drs are hoping it's a side effect of being given the "new" foods, and that it will rectify itself before this Fridays paed visit.  I'm not so hopeful on that as these foods were not new to her.. but time will tell ;)

We were able to rule out cystic fibrosis for once and for all **yaaay** and life threatening food allergies.  She has tolerated the new vanilla flavoured neocate advance formula quite well and has been reasonably ok with pear and chicken as introduced foods.  Both still pass through her undigested but it is some form of solid food that has not got many too dastardly side effects to her consuming.  So they are pluses, however to walk out with more questions than answers is really disheartening when we were hoping to finally know what we were dealing with.

I'm now at home, nursing a baby who has severe stomach cramps, bloating, bottom ulcers from acidic bowel motions and in so much pain she is screaming hours on end.  She has had blood filled nappies in the week since being home and 2 more ER visits.  This roller coaster is making me feel so sick and giddy, I want off... but I can't do that to Aerynn, we need to get to the bottom of what is going on with her - hopefully the follow up appointments we have can help with that and we will get some answers in the very near future...

Friday, September 14, 2012

Quick Update....

So much has happened since my last post!  I've not been able to update while at the hospital as the internet wasn't the most reliable :/ and as much as we have been home for almost a week I've been recovering from our hospital stay - it was so draining not just physically draining but mentally!!!

Anyways I am happy to report that Aerynn tested NEGATIVE to Cystic Fibrosis!!!!  Yaaayyy!!!  I almost cried when they told me her result was within normal levels!  However there is another test we are still awaiting results for for another syndrome which can account for the fat in her stools and a few other things :/ 

I'm hoping to update about our hospital stay properly tomorrow, for now just wanted to touch base and wipe the CF demon out of our minds for once and for all :)