Monday, June 28, 2010

June 28: Day -4

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.


  1. can people pray while they sleep?
    i am going to try....

  2. I am friend's with Daylon's Aunt and Uncle and have been following Daylon's story. I saw your comments on their blog and just had to take a look. Please know that all of us that are praying for Daylon would intend for those prayers to reach other children and families in his situation that we may not know about. We will keep Bella's names in our prayers, as well as her family. Good luck, and what a wonderful blessing to have your families there for each other to comfort and be with each other.

  3. I'm sorry that Cytoxin is taking a toll on poor Bella. I'm glad you've been able to get some zzzs though!Hopefully she'll sleep all night for you tonight. I know I've already said this but I'm glad we're in it to win it together. Erin gave me your message. I was going to take you up on your offer and come chat but it was like a rolling avalanche of events. Thanks for your kindness.

  4. Extra prayers are coming your way. Hope Bella continues to sleep through the night for you. That sure would help. Keep up the great work with your updates. I know I check every morning to see how your precious Bella is doing. Take care of yourselves so that you can take care of Bella and Ali. Lots of hugs and kisses. Love Leah's Nana

  5. I'm Daylon's Aunt Jess (Brian's brother Brent is my husband) and have started following Bella's story since you contacted Brianh & Jennifer during our fundraisers. Bella is just a little angel! We are praying hard for your family. I'm also really glad you're there with Brian & Jenn. I know it is a great help to them to have another family there who understands. Sending lots of prayers & love your way!

  6. Hey guys,
    Jackie and I are thinking of you all. Don't worry about the fevers, they'll get higher and lower and just keep nipping at you. Celebrex worked wonders for Rafi when she was running 104.8 fevers. Cooling blanket, ice packs, tylenol and celebrex does a body good. Can you brush Bella's teeth with a toothette? If so, get the nurses to give you caphosol, it's an artifical saliva that has shown to help with mucusitis. As they will tell you, it's not going to hurt. Rafi loved it. Give a call whenever you want, my cell is always on.

  7. Praying for you'll also. sg

  8. Bless you all,what a thing to go thru! You are stronger than I. Praying for you all and that Bella feels better! Lydia

  9. Still thinking of you every day. Glad that sweet Bella is getting some rest, although I know the day time is crappy. Praying she remains stable and able to sleep peacefully. The same for you guys too! Hugs.

  10. Thinking of you all and sending our love and prayers.

    Daycare Family

  11. Its nice to see Bella sleeping peacefully. I can't even comprehend what these drugs do to her tiny body. I can see from reading others stories that it has got to get worse in order to get better, what a difficult situation. I just pray that the end result will make it all worth it, I truly believe it will, Bella seems healthy and strong all things considered. If she was my child, I would do the same. Get well soon Bella!

  12. I hope that Bella had a peaceful night. I say a prayer for her and all of the children with EB, whenever I think of my EB Angel Granddaughter Leah, and I think about her and miss her all the time. Bella and all the other children with EB that are participating in the BMT trials are giving families touched by EB hope. I am amazed by your family, your Faith and strength, and your ability to tell Bella's story so well, through your words and pictures. Judy T. (Leah's Grandma) in MD

  13. I am praying for your sweet Bella and you guys. It is amazing that you already know Daylon and his family and you are there together! God is good, all the time. All the time, God is good.

    I can see from the outside looking in that families with EB are truly family to each other. That is wonderful.

    I'll continue to pray for your sweet Bella, Dr Wagner/Tolar and the medical team as they work with you to help Bella live a better life with less pain and misery.

  14. Prayers for sweet Bella and her wonderful family!

    A friend in NC

  15. Many prayers for healing sleep for Bella...and you guys too!

  16. Sleep well beautiful Bella :)

  17. Praying for your beautiful Bella and your family.