Drug wars

She's a little damsel in distress. Or is she a heroine? Either way, she's a natural (with poses like that). 

Belle had to receive a blood transfusion this afternoon. That marks 10 transfusions since she was born. It's not really a milestone we want to celebrate, but she needed it. Yesterday her hemoglobin was on the lower side, and we noticed how pale she was beginning to look. It was about that time for a transfusion, I suppose. 

Arabella was still having a hard time breathing. Her oxygen was as high as 80% today - something we've never seen from her before. It's astronomically high for Belle's standards. 

Drugs and their side-effects, man.

I don't want her taking any of this stuff, but hypoglycemia is a real problem with some preemies. It's all about brain health, so we need a permanent solution for her sugar if we ever want to take her home. I feel like these drugs aren't the answer, though.

Hypoglycemia is something that Arabella might battle for the next year or two (possibly even longer), so it really matters which route we take.

This Diazoxide is a pain. It's an oral drug, but it causes too much fluid retention. It creates high blood pressure in Bella's lungs, and they become overworked and flooded with moisture. It exhausts her, and that's why we're in this mess right now. 

Today the doctors started her on a different drug, and I'm not sure I can approve of this one either. It's called Octreotide. It has to be injected every 8 hours, and there are a ton of side-effects associated with it as well. It's overwhelming. Octreotide even suppresses growth hormone, so long-term use is especially a concern for growth. 

What's a dad to do? We're so tired of all these drugs. I know that Belle is too. We clearly need to shake things up.

We spoke with someone today about having a core neonatologist for Arabella here at Sick Kids. We obviously need someone that knows her intimately, that knows her inside and out. 

We require one doctor that would oversee everything happening with her. One person we can trust, because sometimes it feels like we can't trust anyone. We've been here for a long time and it's important that we finally have a doctor that truly understands Arabella's multi-layered issues. 

We have our guard up anytime we speak with a new doctor. It's frustrating. Sometimes it seems like drugs are their only answer. 

It can be grueling out there.