Sunday, September 19, 2010

September 19: Day +79


Overall, it was a good day for Bella. Don't know if I could say the same about this evening... we'll see what the rest of the night brings. Bella needed to be run +10 mL an hour on Prisma all night and morning to get her blood pressure back out of the toilet overnight. Also, this morning, the docs got rid of the ketamine altogether.

Unfortunately, it didn't do much good. When I left this evening, her BP was 40's over 20's again, AND she was shaking like a leaf on a tree. It was a terrible state to leave her in, but I literally could not stop yawning, so I came home to get some much needed rest.

It is really hard coming back to RMH to go to bed some nights. I just want to stay in her room with her, but my presence doesn't keep her BP up, and I HAVE to keep myself healthy. The fastest way for me to get sick? Skip sleep. Still, knowing that doesn't make being over here at RMH any easier.

Tomorrow is going to be one busy day for the little girl. We are getting to change her dressings on her trach for the first time since surgery on Thursday, also changing out her prisma circuit, and possibly an MRI.

In other news, we went on a downtown adventure today! It began with figuring out how to take the bus... not an easy task for a southern Californian, let me tell you! LOL. We started out going to the Twins game. They built a gorgeous new ballpark, and this is the end of the first season in it. We had to get tickets on stubhub (online ticket reseller/broker service) because all the home games are sold out for the rest of the season. Now I know why. Now, I am admittedly not a big baseball fan anymore, but what a pleasure it is to watch a game in this new park. Not a bad seat anywhere, and we were in the nosebleed seats! Even though we had to shell out some cash to get tickets, we were under no illusions that Ali would make it an entire game. We guessed half a game at best (4.5 innings). Well, it was midway through the TOP OF THE FIRST when Ali said, "Daddy, this is BORING." So, cotton candy, ice cream in a helmet, and popcorn were all consumed to keep her at bay as long as possible.

From the stadium, we headed over to Nicollette Mall, then Loring Park. Loring park is an adorable downtown park with a big pond that had fish and geese, playgrounds, and PACKS of squirrels. Gotta admit, I miss squirrels. I grew up with them, then moved to the desert and now that I'm reunited, I love it. I know they can be a pain, but they are so darn amusing - Ali, mommy, and daddy crack up all the time at their antics. We even saw two black squirrels with brownish red tails today. Never seen those before.

After the park, we made our way over to St. Mary's Basilica. This was a joy to behold. The basilica was built in 1908, and is absolutely gorgeous inside and out. We walked in on Sunday evening mass, and stayed for a little while, lit a candle for Bella, and prayed for her together as a family. That felt really good.

Then, it was off to find the bus to take us back to our neighborhood and a little Punch Pizza for dinner to top off the day. After dinner, we headed straight over to the hospital for a little evening social time with Bella.

Please pray/intend/generate that tomorrow's trach change goes well, and that there isn't any infection or other collateral damage. Please also pray/intend/generate that as we "wake Bella up" from her sedation, that the docs quickly find a way to keep her comfortable while letting her brain kick back into gear. And finally, please pray/intend/generate that this waking up will cause the much needed shift in Bella's blood pressure regulation. Man, we need that so badly right now.

God night, and thank you for your support and energy. We are so grateful for all of you.


  1. Praying for a restful and steady night for Bella! Prayers are ongoing here in our household for Bella....I pray that tomorrow runs clear and seamless. Great pictures!
    xoxo Bella Doll,

  2. Checkin in and registering your request just before I hit the sack. Intention held. xoxo, wendy burkhard

  3. Hopefully Bella's busy day tomorrow will help keep her BPs closer to where they should be. Nothing like a "little commotion" to raise those vitals... :-)

    Just wondering - is she still on hydrocortisone? I believe I remember you mentioning that she was on that at one point. Maybe she needs to be on it (at stress levels) for some post-op stuff. Just a random thought from a NICU nurse down in Chicago.

    Hope Monday goes well for you all!

  4. God, please help to heal Beautiful Bella and ensure a smooth day on this Monday. Please help to bring her blood pressure up, and help that little girl wake up and become the Bella that her father, mother and sister know so well. Bless the doctors with wisdom and care so that they can give Bella the best care that she deserves. We trust you know what you are doing, and thank you.

    Much LOVE to Bella.

  5. I don't know where else to write this, so here goes:

    I've been following since May, but nobody would know it because I stayed quiet, reading and praying but not speaking. I've not been myself, but that is a whole other story. Since the first day, Bella has been special to me. Every night I anxiously check on here, afraid to hear bad news but tremendously waiting for the good news; then I tell my husband all about it. "This is how MY Bella is doing..." I feel so very invested in Bella, in her spirit. I feel my heart pulling out of my chest to find hers, to give her the strength to hold on, to fight. I do love this little girl, I can say. I urge to do things in my life with the spirit of people who are special to me. That includes Bella, and my own children: Samantha, age 2 in four days and EJ, age 7months.

    Samantha and EJ. I always read what you write about Providence. I got to your page from many others, but starting with Sam's. I found about Sam right after my daughter Samantha was born. Then right after my son was born, very soon after, I found about EJ's page. That just can't be a coincidence. I don't believe in those. :)

    I am not rich, nor am I person of ginormous ability; but I swear that I would give everything in me to cure EB. Cancer played it's cold, evil hand in my life last October, and I am not about ready to surrender to EB. It's just as bad as Cancer, and I don't understand why most can't see that. I want to make it just as important. Please let me know how to fight alongside Bella, yourself and the so many others.

    God Bless,


  6. P.S. Ginormous, while not technically a word, is my favorite to use. Ha. GIGANTIC + ENORMOUS = GINORMOUS. :)

  7. Sending all my strength to you Miss Bella!!

    Shana XXX

  8. Hi Tim: So glad that you guys could go out and enjoy yourselves. Great pictures!!
    Extra prayers for the trach dressing change and everything else that beautiful Bella will have done to her today. Hang in there. Keep the Faith.
    Love and Peace. Love Leah's Nana

  9. God morning! Wishing Miss Bella a good day with improvement and no complications.

    Praying for healing,

    A friend in NC

  10. praying for a successful monday! hopefully, today will be full of wonderful news for "our" bella!

    god bless y'all!

    w-s, nc

  11. Sending my prayers to your whole family and especially to Bella. I hope your Monday goes well.

    ~ christina

  12. Thinking high blood pressure thoughts for bella!!

    It looks like a great day with Ali! Loring Park is a Minneapolis gem.

    By the way, Punch Pizza is donating 100% of all Bambini (kids) pizza sales to Children's Cancer Research Fund this week. Another reason to go to Punch again. Care Partners is delivering pizza to the hospital too. You picked a great pizza place to support!

  13. Storming Heaven for you, Bella! Calling upon all to surround you and lift you up. Lord, please send your healing Hand upon our precious Bella and surround her family with you unceasing love. Praying unceasingly here...

    Aunt Mary

  14. We are Prayer Warriors for Miss Bella! (My sister Natalie came up with that:)) We will be praying that the trach dressing goes smoothly tomorrow and that as they wake her, her BP gets strong.
    Love the pictures and love you guys!
    The Vanderbooms

  15. Lovely pictures and a beautiful day with Ali. She was very brave to watch a baseball game!
    Always praying for all of you.
    Love, Mariana

  16. Lots of prayers/intentions for ALL of the aforementioned items! May God bless Bella with a successful procedure and may she awake from her sedation with a renewed, strong BP.
    All our Love,
    The Gleason's

  17. Praying for sweet Bella today and always.

    Grandma Carolyn

  18. Hello,

    I found your blog through a friend and have been following it since before Bella received her transplant. Your blog and Daylon's is one of the first things I read in the morning. I just want you to know that strangers in South Carolina are praying for your family. God Bless.

  19. The only way you can continue taking care of Bella is to take care of you. I hope today went well. As always thinking of and praying for Bella.

    Denise WI