The good news? Bella slept through the night again!
The bad news? This morning, I awoke to, "Code Blue. Unit 5D. Room 518. Code Blue. Unit 5D. Room 518."
That's Daylon's room. He's 4 doors down from us. He's the sweet boy with Junctional EB that is one week ahead of us in the clinical trial. He lives 20 minutes from us in CA, was born 6 weeks after Bella, ended up in the same NICU with the same nurse, has the same GI doc, and pediatric dermatologist as Bella. The two are as close as you can get in this rare world of epidermolysis bullosa, except for subtype.
Since I work in hospitals, I "hear" codes very clearly. I heard it when they called a code on Bella the night she was born. Now, when I hear "Code Blue. Unit___. Room___." It means something very personal to me. I know that there is a family whose family member has just stopped responding and is no longer breathing and/or their heart has stopped beating. There is no way to describe the immediate helplessness felt at that moment. When Bella's code was called, she was in a pod, and there were 8 isolettes in the pod. So, when they called her code, it only said the pod number. When I heard the pod number, though, I thought about who else was in the pod, and for some reason I just had a bad feeling. 30 minutes later, when the phone rang in our room at 12:30 am, I knew my feeling was right on.
"Um, Mr. Ringgold? There's been an incident. You need to come down here."
All this flashed through my mind while laying in bed this morning. That was a scary way to start the day. I just stood next to Bella and held her while she slept. The code reminded me that this procedure is a mixed blessing. It holds promise, but at such cost.
Today really wasn't very good for Bella, either. At noon, her temp was 99. At 4, it was 102. At 8, 102.8. At 10, 103.3. She also vomited this evening and it was unlike anything I have ever seen come out of a baby. She is really weak and her torso and head are just on fire, but her arms and legs are cold. Weird. She's on antibiotics and tylenol. We know that the chemo itself can cause fevers, so the antibiotics are really just a shotgun blast in the dark, but hey, if they hit something and the fever breaks, great, right? The thinking is that the chemo has begun to know out her white blood cells (by design) and therefore any number of bugs (viral, fungal, bacterial) that normally would be fended off can now start to run riot. This is part of that collateral damage of this procedure. You just leave the body so defenseless. This is the part of the journey that scares me the most, and always has. Infection.
So, not exactly a banner day for Team EB. You can follow Daylon at:
Please drop by there and send him and the Edlings some love. They are a wonderful family and we just love them more and more as we get to know them better. If nothing else, please say a prayer for Daylon that he heal peacefully and fully, for strength for mommy Jennifer and daddy Brian as they also balance caring for their 4 other kids that are here, and for Brian's mom, who had to get on an airplane in the middle of the day to return home. That must have been the hardest thing a grandma could have to do. Thank you for sending them your prayers.
At least Bella is sleeping peacefully right now. Sleep, Bella, sleep.
Bella's machines at night...
P.S. The doc explained to me that temperature itself does NOT cause any damage or risk. It is simply a marker of the intensity of the infection. It's the infection that does the damage, not the temperature. Stories of brain damage or brains frying from high fever temperatures are incorrect. It was the infection that did the damage, not the heat. Haha, after reading that, I don't know if that makes me feel any better, but it was an interesting thing to learn. It came up because we contemplated giving Bella celebrex to help lower her temp. Temperature is related to comfort level, so celebrex will make a person feel better, but it won't treat the source of the temp. Celebrex is harsh on the liver, so while Bella is sleeping peacefully, there is no reason to load up her liver any more than it already is.
So the game of troubleshooting has begun. The good news is that these docs have had EB kids on this unit continuously for 2 years, so this process is not new to them with EB or BMT. Go docs!
Ok, enough for tonight.