Saturday, September 18, 2010

September 18: Day +78


Well, it wasn't one of Bella's banner days (or Arsenal's for that matter, but that's another story). We had the toughest time keeping Bella's blood pressure out of the toilet today. If we stimulated her, we could get it up, but if we let her be... well, we saw 40's over 30's at one point today.

Not good.

The attending ICU doc was a little gloom and doom with me today, but we'll have a new doc Monday, so I just nodded along and tried to ignore the ominous comments about what happens if Bella doesn't respond... save it. Bella has 4 different sedation medications running through her system 24/7. I convinced the ICU doc to begin weaning the ketamine off. We also have methadone, ativan, and precedex running. We really don't need the ketamine. Plus, ketamine can raise blood pressure in most patients, BUT in her case there is a very probable situation where it is causing the opposite effect. Without getting in too deep about why, suffice to say that we've began to notice that the ketamine has made her BP dip, not surge. So, out goes the ketamine ASAP. We can't just turn it off, but at least we began the move to getting it out of Bella's body.

They were making pillow cases for the patients today... Ali loves lady bugs, and well, the butterflies made it a no-brainer!

So, again, the goal is to keep Bella "propped up" on pressers until we can began to roll off most of her sedation. We think we will begin this process on Monday. We will also get to change her dressings on the trach on Monday as well. Oh yeah, we'll be changing the Prisma circuit on Monday, too. Oh yeah, they may want an MRI of her liver while she's off the circuit... on Monday. Think Monday's gonna be a little busy?

Ali in her Mermaid Barbie comstume...

Tomorrow, we hit downtown Minneapolis for the first time as a family! I can't believe it. We've been here since the beginning of June and it's the first time we're venturing downtown together. We have tickets to the Twins game, and we're going to hit the sculpture garden downtown as well. Should be fun! Also, hopefully Chelsea FC in England will lose or draw tomorrow, and Manchester United will lose to Liverpool! HUGE RIVALRY there. We (Arsenal) we lucky to draw today after an abysmal performance, so we need the other big boys to choke as well. Alright alright, that's enough sports talk for one day!

Can you say, "ROCK STAR?"

One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.


  1. Praying for Bella and your family during this long trial. Hope Sunday is a fantastic family day and an amazing Bella day.

    A momma in TX.

    Wouldn't ti be awesome if removing the ketamine completely solved the bp issue?!

    here's hoping.

  2. Aw heck, you're all rock stars!! I would love to see a picture of the four of you wearing those awesome shades!! Still praying, still sending healing, restful energy...(maybe too restful Miss Bella??) Looking forward to the not so far away day that Bella turns that corner...blessings to all, especially sweet Bella, beautiful baby girl, who WILL be WELL!!

  3. Praying for increased strength and joy (tomorrow) as you get to create a family memory. God has a plan and He's working . . . even if it's hard to see. Big hugs to you all. She's strong and strong-willed. Soon and very soon . . . God's blessings surround you all . . . always

  4. Well, almost the whole family, cmon Bella show those docs who the boss is! Bella has already overcome some tremendous hurdles and I have faith the lord has more in store for her. She has been a great teacher showing us all there is more to life than medicine. The strong community of faith blanketing your family is felt the worldwide. Compassion and love for you all. Prayers going up every single night because Bella will say "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

  5. Love those new eyebrows, Bella! Hurry up and wake up so you can go with Daddy, Mommy and Ali on their next adventure. We love you and are "with you" every minute of every day!

    Aunt Mary

  6. I love to see Bella's whole face.. Have a great time on Sunday. I think it is wonderful that you get to see how great Minnesota is. I have been her my whole life. It will not be long and you all will be playing in the snow. I pray Bella wakes up and can see her first snow. You are all one great family. Helping others with EB. I still am praying hard for Bella to pee and wake up so we can see her smile. I know she will be very weak at first but she is one very strong girl and pray she will bounce back fast. Come on BELLA show the Doctors how strong you are wake up and give us some urine!!!

  7. As always, one day at a time. If one stays in the present - situations seem easier to deal with. Thinking about all of you. Terri

  8. Hoping the Twins game was all Ali & daddy hoped for - Angelique how was the stadium food? LOL

    Prayers are coming your way! Bella is always on my mind and added to the prayer list at our church weekly!

    Sending positive energy to stay strong! Ali I love your Rock Star glasses - I want to see a picture or mom & dad wearing them!

    Tina & family in NJ

  9. Just sending over a thoughtful hug to Bella....