Update on Kaiah
24 June 2016
Our 20 month old beautiful wee girl Kaiah has been going through a very
We took her to our local GP who did yet another blood test - which showed her amylase (digestive enzyme) was very high.
We immediately got sent to nelson hospital on 15th June and they sent us down to CHCH hospital that night to see Kaiahs original surgical team.
They decided to do a specialised MRI that looks specifically at the pancreas . This showed that her pancreas is not formed correctly. It is basically a congenital abnormality (born with it) in which 10% of the population has (but it doesn't cause them any problems) it's called pancreatic divism - in a Kaiahs case it's severe. She has a range of abnormalities these cause her digestive enzymes to spill into her abdomen which is known as pancreatitis. Kaiahs case is rare and very rare in somebody her age.
The CHCH team sent us up to Wellington hospital to meet with a specialist who told us we would be here for several weeks. Kaiah is not allowed to eat anything and is being feed via a nasal-duodenal tube. This means her pancreas isn't as stimulated to excrete pancreatic enzymes which results in less pain.
They are working on getting her pain under control and settling her pancreatitis - she has two fluid filled cysts in her abdomen which is dangerous as they can become infected. We need to treat this before they can even consider surgery.
Her surgery will not cure her but will help with minimising the chance of repeat pancreatitis and pain. It's not curable but her quality of life will be better after surgery. The operation is major and we haven't been told much about it yet.
Wellington is going to be our home for awhile - Kaiah has a little brother due to be born in 10 weeks time so looks like we will be bringing two healthy babies home from Wellington.