Help Jana And Aaron while their beautiful little girl Kaiah is in hospital
Please help Jana And Aaron while they are with their beautiful little girl Kaiah in hospital.
Nelson / Tasman
*UPDATE*
Kaiahs Journey.
Our 20 month old beautiful wee girl Kaiah has been going through a very rough time for the past 3 months.
We have been in and out of hospital trying to find answers to why our little girl has been having severe abdominal pain - so severe she would pass out.
After a lot of investigations we were told that her duodenum had perforated causing an abscess/mass in her abdomen.
She had surgery on the 12th May in CHCH hospital which basically cleared out all the inflammation and infection and straightened her bowel back into place - as they believed this was causing her pain.
It was a major operation and our little girl is left with a scar across her tummy as a reminder.
After being discharge home for less than three weeks her pain started again... So severe she was waking 6 times a night and her appetite was minimal.
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.
Thank you to everybody that donated to our first givealittle page it meant a lot. The money donated from this page will be used to assist Kaiahs family with travel costs and all the other costs associated from being away from home and work.
It's a massive shock for us but also nice to finally have answers after such a massive battle to be heard as parents! This is just the start of Kaiahs journey and we can't wait to have our pain free vibrant girl back
Thankyou
Aaron, Jana and Kaiah
Kayla Riley's involvement (page creator)
I'm Jana's Cousin. I Have made the page in hope that we can all relieve some the stress they have while they are trying to get Kaiah better.
Latest update
Update Aug 16 23 August 2016
Hey everybody here is an update on Kaiah.
Thank you so much for all the love and support we have received from everybody! We are overwhelmed by people's generosity ??
Kaiah is set to have surgery in the middle of October (her 2nd birthday ??) at Wellington hospital. Basically she does not have pancreatic divism like first thought - after her 3rd MRI in the new scanner they were able to rule that out.
But what she does have is an area inside the head of the pancreas which is inflammed which the specialist has suggested could be a duplication cyst. This could be the cause of her pancreatitis or it is possible that it is secondary to her having pancreatitis.
The plan is to core this area out of the pancreas. This is major surgery... but we have to give it a shot to get our little girl back to "normal".
In the mean time Kaiah is tube feed into her jejunum still over 20 hours of the day, she is not allowed to eat anything only clear fluid - which we have to currently manage at home. Which is a mission now, and will be even more so with the arrival of her baby brother in the next couple of weeks ??
It is nice that she is well enough to be at home until her surgery. But we are back and forth from Wellington a lot.. as if her feeding tube comes out or stops working Wellington hospital are the only ones that can replace it. Which is a massive trip in itself and very unsettling for Kaiah.
So we are just trying to enjoy being home as much as possible before the next massive step in Kaiahs journey. We will probably be in wellington for up to 4 weeks for recovery. Maybe home sooner if all goes well. If the surgery is successful then Kaiah will be able eat again if not then we are back to square one with trying to find a diagnosis for her pancreatitis.
Thanks again everybody for the support it means so much to us. Without it this situation would be 100x harder.
We still have our givealittle page running, the money has been so helpful at paying for travel costs and not having to worry about bills etc being paid - thank you to everybody that has donated!
?? Kaiah, Jana and Aaron
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