Belle Update: June 13

Belle's breathing got better today.

As the day went on we watched her oxygen needs slowly go down, and by the late evening it was finally in the 30% range. Her air pressure was still very high, but it ensured that her lungs remained fully open and expanded.

It's taking Belle a long time to recover.

Kiera and I are absolutely exhausted from this last week of events. Emotionally and physically, we're spent.

As tired as we are sometimes, we always find that extra bit of gas to push forward. We want to give as much time and affection to this little lady as possible.

We've been so worried about her lately. 

Tomorrow we'll have a sit down with a doctor and someone from Endocrinology to discuss the various drugs to treat her hypoglycemia. It seems like there's not much of a choice, and it will likely boil down to which drug will do the least damage. There are numerous side-effects with both Diazoxide and Octreotide, the two main drugs of choice at the moment. 

We feel sick to our stomachs just thinking about these drugs. Somehow, this isn't a scenario I imagined for a treatment plan. Which is the better of two evils? 

Right now Arabella has switched over to Octreotide and receives injections every 8 hours. Fun fact: Octreotide is a drug that hasn't even been adequately studied for treatment on children! 

Wonderful, isn't it?

It's absolutely frightening and we've started to notice the immediate side-effects already. Belle seemed more sluggish today, and her heart rate decreased to the low 100's (we typically see her in the 150's). So far it has worked to keep her sugars up, but it's not a drug we feel comfortable with. It's given to patients only if the benefits outweigh the risks. It's a last-resort kind of drug, so it makes us wonder - is this really the last resort?

Every drug has had an adverse effect on her, and it worries us to bits. Her body is still so immature, her organs are just starting to develop, and yet she's been through piles of drugs already. 

We're frustrated, we feel helpless, and we don't know what to do. We just want what's best for her, and these various drugs end up causing some kind of damage, one way or anther. 

We'll relay our concerns to the staff tomorrow. It's important that we're Arabella's voice right now. 

If we don't speak up, no one will.