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
