Results day.

So this morning, I woke up feeling pretty optimistic - I felt we were getting what we had hoped for. Orlaith wore a dress (for the first time!) for the occasion and we were all set, ready and waiting.... Results day! Ward rounds were running slightly late which didn't help our nerves or anxiety - we have been waiting for 11 weeks for this day, patience is wearing thin and all we want to do is know what we're dealing with.

All in all, it was of normal fashion.. They sat us down, gave us our news, answered any questions we had and that was it. It was an extremely emotional moment but keeping O in mind, we just want her healthy and well. 

We didn't get the news we had hoped - Orlaith has diffuse CHI, the most common form and although blood tests indicated it was focal via genetics, as I said before it is possible for the outcome to swing either way. Haemoglobin has also been detected low consecutively for quite a few days so hello blood transfusion number two! Octreotide (intravenously through the thigh) is going to take over as her main source of insulin management, its a hormone which helps with glucose levels and is common in diazoxide-unresponsive HI patients, like Orlaith - this will run along side the glucagon until her BM's are above 10.0 then glucagon will stop. If BM's are still above 10.0 then dextrose will stop. 

So our plan now is to trial the above and keep going..stabilise, monitor then home. If it doesn't work, then we start again until the HI is stabilised. This can take weeks or months, there is no time scale. 

Today certainly wasn't the day we wanted but we couldn't be more proud of Orlaith; countless nurses and drs have told us how brave she is but the courage she has is extraordinary We'll get home soon cupcake, I promise!