Boy, are the days running together...
LOL, I have to tell you, Bella slept through the night last night, but I didn't! I was so nervous/anxious/prepared? for her to awaken in the middle of the night (like the prior 3 nights) that I psyched myself right out of a good night sleep! I was laughing at myself at 3:40 this morning lying in bed, unable to sleep. Good for you, Bella. Good job; at least one of us slept!
Well, today we said goodbye to busulfan (yay! no more daily dressing changes for now at least!) and helloooo to cytoxan. BOOOO! Just the name alone portends bad things to come! Bella began her cytoxan at 10 am and by noon was dry heaving. That was a drag. The good news was that we had already upped her anti-puking drugs to near full capacity, so it could have been worse. Also, we started venting her stomach pretty soon after she got the drug to help release pressure in her gut before it blew! Venting is when we attach her G-tube, open it up, and tape a baby diaper to the open end to collect any drainage. This is like just like a pressure release valve. Instead of the puke building up pressure and exploding up through her esophagus, first, it pushes out through the tube. This is VITAL for EB kids since vomiting is B-A-D because it can damage their esophageal lining.
Prepped for dressing changes... Baby Einstein, ON!
We also doubled her benedryl consumption so she is sleeping a lot as a result of that. This is a good thing, because prior to this, she was feeling crappy and unable to shake it. She had a few moments of cuteness today, but mostly she was really unhappy about feeling so crummy. Can't blame her! So, sleep, Bella, sleep. You ain't missing a thing.
All in all, so far, the docs are quite happy with her labs, her skin, her vitals, our wound care, and her side effects. We are grateful for the amazing level of care both Bella and we as parents and big sister are receiving here. They have had at least 1 EB patient on this unit non-stop for two years running, so we don't have to explain A THING. Can I just tell you how refreshing that is? Life is good. God is good. All the time.
A quiet Sunday overall; nothing unanticipated. We knew she'd feel a lot worse today, and guess what? She does. Sure it's a drag for her, but with her sleeping so much today and last night, I simply can't help but feel grateful that she's sleeping through it.
In other news, this month of June we dedicated to giving away half of all proceeds from Bella's book to DebRA from the first dollar raised. Well, we haven't sold nearly as many books as we hoped, so if you haven't yet, please consider purchasing Bella's Blessing: A Humble Story of Providence. It chronicles in bone chilling detail Bella's first three months on earth and how through friends, family, and most of all faith, we came to see her condition as a blessing.
Thank you for being with us.
P.S. Go Germany!