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...

1 comment:

  1. Oh Katrina,
    So much heartache... I so hope you get some answers soon.. feeling for you all and little Aerynn that looks like a little Angel in your photo's... so sad, we have much to be thankful for in life... I hope for an answer soon..

    thinking of you all xo