Tuesday, June 29, 2010

June 29: Day -3

Mommy got Bella to crack a smile for her even through the fever...

Well, day number 2 of an apparent infection. Bella's temp has been elevated (febrile if you're a doc - stay tuned for more 'docisms' as they surface...) all day, and she threw up again tonight when we sat her up for only about 30 seconds. She was very docile during bandage changes and has been sleeping most of the day. The blood culture they drew last night came back positive for a bacteria, so they have adjusted her antibiotics to a more specific med that can treat it more directly.

Dr. Wagner came by today while Ang was here to check in. He mentioned that something like 90% of infections they see up here come from the stomach. This made me relax a little about obsessing over her wounds. I've had an ongoing issue with controlling this disease, and knowing that I can't control her gut, actually provides an opening for some serenity to creep in and calm me down. I will be as vigilant as ever, but I don't have to obsess. That's reassuring. When Bella got an infection, I blamed me/us for it. My irrational thinking was that if we keep her wounds in good shape, we can control whether she gets an infection. What folly.

Ang's best friend Jen came in to town last night for the week to help out and take Ang to the next episode of the Twilight! The two of them have been to the first two together, so it was really sweet of Jen to volunteer to come up so they wouldn't break their streak! Ang is a big Twilight fan and there was a period of several months where not a night would pass without seeing her in bed with a Stephanie Meyer book in her hands. Today, Jen took Ali to Nickelodeon Universe at Mall of America. Tomorrow, Jen and Ang go to "Eclipse," the latest episode of the series while Ali gets a play date with her new BFF Ellery. Me? I got a hall pass today to walk over to Applebee's to watch Spain beat Portugal in the World Cup Round of 16.

My biggest dilemma is that there are no games till Friday. First 3, then 2 matches a day have really helped the time pass and my brain shift gears! My other dilemma is that I seemed to have torn my lateral left meniscus again. That's the cartilage that acts as a shock absorber in your knee. I have torn my lateral (outside of the knee) meniscus in both knees previously and it is a very specific feeling. This happened when I played soccer two Saturdays ago. I have rested the knee since then fearing this is what I did, and I tried just jogging about 20 yards today and immediately could feel the pain with every step. That's a drag, because I'm not really in a position to get my knee operated on! Even though it is an outpatient procedure (arthroscopy), I was laid up for quite a bit on both prior occasions, not to mention 6 weeks of physical therapy. So, it'll have to wait till we're back in OC. That way, I can have my same orthopedic surgeon do the work again. It'll be like dejavu! It also makes me sad, because I was really looking forward to venting my stress out on the field. Sooo, my classical guitar made the trip over to the unit today, and I guess I'll be pouring my stress out through my fingers instead of my feet.

Trying to "air out" to cool off a little...

Yay! Tomorrow is Bella's last day on cytoxan! Weeeee! She began a new drug today also called cyclosporine, or CsA. It is an immunosuppressant used in transplants to help Ali's cells take root and start growing without Bella's cells killing them off. She will be on CsA for quite a while, and it will make her hair dark and increase her body hair, so she just may end up a brunette for a while after all. The hair effects go away once she is off the drug, but some patients report a permanent change in either their hair color or density. The other side effect is that her blood pressure will most likely go up from it. This actually already occurred. I do her vitals every 4 hours while I'm awake, and the nurses or nursing assistants do them overnight, and at one point today, Bella's BP was almost the same as mine. Mine usually runs 110 over 60 and hers was 103 over 58! That just didn't seem right. Up till today her BP was always in the 80s or 90s, but we hit triple digits on the CsA! Good times. Really, it's not too big a deal at this point. Just something else to watch and notice.

Alright. All in all, a pretty quiet day.

P.S. Check out the new video I put up... it's a grand tour of Bella's hospital room! Woo hoo!

P.P.S. Only one more day to pick up a copy of Bella's book and have half the proceeds go to DebRA! Please consider buying a copy if you haven't already. Thank you.

Thank you for all your comments. Ang and I talk about them with big smiles every day. Also, when you sign your name, put your location as well. It can be either city/state or just MN for example (or country if you're outside the US). It always fascinates us how many people from how far around are praying for Bella. It really moves us to consider this web of prayer coming in over her from all over. Will you add that little piece for us? Thanks!

Good night, and God bless you.


  1. Praying for Bella from Central Florida! Praying that the infection is easily taken care of and that you all will have strength for this long journey. God Bless!

  2. Our God is the umbrella through this storm! He is protecting beautiful baby Bella! A great work is being done in your little girl's life and we are here to witness this miracle! Praying fervently in Central Arkansas!

  3. Sorry to hear she has an infection. I will be praying for fast healing. Gabby from Wyoming. :>)

  4. Praying, praying, praying and waiting with you for the days to go by quickly and uneventfully. Laura V. from Cologne, Germany

  5. Praying for you all. God is our refuge and strength, an ever present help in trouble. Love from Lindsay (Newcastle-Upon-Tyne, UK)

  6. it is hard to look at sweet Bella looking so "pooped" - to say the least. It is sad that EB kids have to go through all this.
    Hang in there, sweetie!

    On another note...Spain beat Portugal and we are on the quarter finals!

    Sending all our love from Mallorca (Balearic Islands), Spain
    juana +
    martin and ines

  7. What a sweet little girl... she looks so peaceful in the pictures above. Hopefully her body is getting all the necessary rest for what's to come.

    I'm glad you are enjoying the World Cup... I'm bummed too about having to wait a couple of days for the next game. The Brazil one should be fun to watch on Friday. I was thrilled to see Spain win- that's where I'm from even though I live in Southeast Florida. I love football.

  8. Praying for Bella in upstate NY!

  9. Found your blog through Patrice's (Jonah's mom) blog. What a beautiful little girl. Prayers for healthy new skin from Orlando, FL.

  10. Well, it's official. I'm falling in love with that precious little girl of yours. As much as I dislike the internet because it becomes a time thief, I love the way it allows me to become aware of these sweet children who need our prayers. Thank you for sharing your very personal journey with us. Prayers for a good day!

    A friend in NC

  11. Praying for Bella in Wrightstown, NJ!

  12. It' no surprise that Ali has a new BFF...
    She's awesome! I wish I could come to MN to play with her at the Mall of America. I would maybe even go see Eclipse again with Ang. I am so NOT a Twilight mom...but, I would take her :)

    And Bella, she remains the same sweet soul, her eyes tell a wonderful story...

    Sorry about your knee, Tim. More prayers coming...

  13. Praying for Bella and your whole family. Blessings from WA!

  14. I'm from Scotland by the way! So pretty far away. I went to college in PA, but have never been further than the east coast.of the states. Still praying for beautiful Bella, I check up on her every day as soon as I'm finished work. Glad she's still smiling!
    I love twilight too, but not going to see it until midnight on fri night (fri evening your time) so no spoilers please! (I know the story from the book anyway...) Hope Ang enjoys the break for a few hours.
    Praying for Bella and Daylon and all the family members there at the hosp!

  15. I'm following your blog every day and praying for sweet Bella and the family! I had the pleasure of being in MN last summer for a few days and you are in God's country. It was so beautiful. Give sweet Bella a kiss from Dothan, Alabama!!

  16. So sorry that Bella has a fever. She really is beautiful, but I think all EB children are special. Glad that Ang will get a little bit of a break from hospital crap and hopefully take her mind off of things for a little bit.
    Sorry about your knee Tim, but everything happens for a reason.
    Praying extra hard for Bella here in Philadelphia. Love you guys. Take care and God Bless. Love Leah's Nana

  17. I'm sorry that Bella has a fever. I can imagine that it is somewhat of a relief to hear that most infections at this stage are from the GI tract. At least you don't have to beat yourself up over her skin and the care you are giving her!

    I hope that the next stage goes as smoothly as possible.

    (Writing from your area, OC!)

  18. We are Kansas City residents, currently residing in 5D as well. We continue to pray for Bella and your family. I have been really touched by your families story. While Bella is the current star of the story, it really is a story of a family that is full of love and faith and indescribable beauty. Thank you for sharing of yourselves and sharing both of your beautiful daughters with us. Praying hard for healing and peace of spirit!

    Marsha (mom of Elizabeth, room 6)

  19. Thank you for the daily updates. Your family is inspiring to me. I am sending up prayers daily for you all.
    Kathryn in Kansas City, MO

  20. Still praying for Sweet Bella in Winston-Salem, NC. Love you guys!

  21. Praying for Bella in Wisconsin!


  22. Praying for you all in Tampa.... keep fighting Bella! Angela

  23. Awwwwwwwwww precious baby Bella,feel better! We are thinking of you daily and praying for your quick recovery nightly! Hang in there Momma,Daddy and Big Sis! Hugs! :)

  24. Praying for Bella in Sutherlin,Oregon!

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  26. xoxo

    The Setto Family - Anthem AZ

  27. Praying not only for beautiful Bella, but the whole family. I have been reading your blog for the past 9 months, but this is first time posting. Bella is lucky to have y'all for parents & Ali as a big sister. I look forward to reading your posts, they are so informative. Please take care.

    Oneonta, AL

  28. You are in my thoughts ALL the time. Add Birmingham, Ala., to your list. :)

  29. Praying all the way from Birmingham, AL

  30. Sending love and prayers for continued strength from the OC.