Sunday, July 11, 2010

July 11: Day +9

Hi world!

This one is gonna be brief:

The Good News:

Bella is growing Ali's cells! We got our first count today. I will go into detail about the numbers and what they mean tomorrow, but that was a good sign.

The Bad News:

Bella's kidneys are getting thrashed by the CSA in her system. Her heart rate is through the roof, and her renal counts are through the roof as well. Tomorrow morning, I go on the war path in rounds. I warned Dr. Tolar tonight as to my plan, and he backed me up on it. More details on more numbers tomorrow. My attention was spent all week getting RT and nursing on board, and I trusted the docs had things under control. Turns out they didn't. I will be all over them tomorrow morning and it is not going to be pleasant for anyone in the hallway, and it doesn't trouble me in the least to make a scene. You should see the herd of people in rounds in the PICU; it's double the number of people in the BMT unit. No one is safe tomorrow.

Tonight, I watched as Bella's heart rate ran in the 170's and she twitched over and over as they had to increase all her meds to try and calm her down. She is working way too hard right now. There is NO reason for it, other than the team has taken a sweet week to bungle her CSA count and they plan to resume it tonight.

Bella's socks of the day...

I am just so mad that they have watched these numbers climb and climb all week and they have not gotten things under control. Can't let anyone outta my radar now, docs included.

Ali and mommy play with yet another addition to the My Little Pony universe...

Hopefully, I'll be a little calmer tomorrow night, and will have better news to report. All I can say is that it is a good thing Bella was as healthy as an ox going into this.

Good night.


  1. You tell 'em, Tim :)
    (Oh, to be a fly on the wall! Can you wear a hidden camera?)

    I do LOVE the good news, though!

    And life is good with lots of ponies...

  2. I was so hoping to see an update before bed tonight...even a brief one is more than ok. I cant begin to tell you how much Bella has touched my heart and have to check in daily for an update. I love the good news. I hate that you have to confront the drs in the shouldnt have too (shouldnt be necessary). But I am so glad you are Bella's daddy and you wont back down from the fight. My daughter Clara (she has NEHI and had a cold gone bad) was back in the hospital just for a couple of days and that is so hard...I cant imagine weeks of being at the hospital. Those two days were spent thinking of Bella and your family...although she pops up into my thoughts frequently during the day and I send quick prayers. To tell you the truth I wasnt much into praying until your story. Now a day doesnt go by without those prayers.


  3. We are here...we are still praying...dishing out some heavy duty prayers...
    God fill the room...
    KC, MO

  4. Storming the Heavens for all. go gently Tim.

  5. I am sitting here shaking my head. I don't know what is up with the docs lately, but it seems like nothing has gone smoothly in BMT for about the last 3 weeks. I have been feeling as frustrated as you felt. I kept on thinking well maybe they are just concentrating their energies on the kids that really need it right now and my daughter is being forgotten because overall she is doing well. It is heartbreaking to hear about what Bella and Quincy have experienced the last few days. Praying hard for God to keep her safe until the docs get their act together.

    Marsha (and Elizabeth)

  6. I hope your next update is about how making a scene resulted in a better heart rate and happy kidneys.

  7. Great good news! Just keep them growing, Bella!

    I am sure you will pass your message! Sometimes, making a scene is the only way to be heard!

    'Hope to read more good news tomorrow.

    Carla and Matilde

  8. Love the good news but boy oh boy, what do you have to do for the drs and nurses to GET IT. I know that EB is super rare but please listen to the parents of these EB children. They are so special and you NEED to be SO GENTLE with them. THEY ARE NOT LIKE ALL THE OTHER PATIENTS. They have SPECIAL NEEDS. I sure hope you get through to them today. Stand firm and through a big snitty fit if you have to. Meg did it a few times and it seemed to work for a little while anyway.
    Good luck with your talk today. God Bless You. Love and hugs coming your way. Give Bella a kiss for me. Thanks Tim for the updates. Love Leah's Nana

  9. Go get 'em, Dad! You are Bella's voice and her strongest advocate. Praying for positive results.

    A friend in NC

  10. Jack and Molly's NanaJuly 12, 2010 at 9:04 AM

    Like everyone else here, I was THRILLED (!) to read about the cell growth. Could we ask for anything more? In a word - YES! And hopefully the outcome of your "conversation" with the assigned staff people will yield some very positive results. Like Sara, I'd LOVE to have an ear to the door while you make your case today. Can't wait to read about it, along with the numbers that show just how well la bella Bella is doing. prayer for you today is that everyone has their "listening ears" on and that they, too, will become more assertive in their care of your precious girl.

  11. Hi, sorry I havn't commented on your posts for the last week or so. I say sorry, because I want to, to let you know I'm praying for sweet Bella. But I check your blog on my phone (busy, busy...) and it's not easy to post a comment, it ends up getting deleted when I try to post it.

    I was so sad to see that Bella had to be put on the ventilator, but thank God she's not in pain. She will not remember any of this, that is such a blessing. I will pray tonight for her CSA count to be normal, I really hope the doctors get it under control.

    On the other hand, I'm happy to hear Bella is growing some of Ali's cells. How great is that?! Long may it continue!

  12. Hey Mate,

    "Such power there is in clear-eyed self-restraint" -James Russell Lowell

    But then...

    "...Float like a butterfly, sting like a bee..." -Mohammed Ali

    And always,

    "Walk softly, but carry a BIG STICK" - T. R.

    And finaly,

    "If you can't push 'em, PULL 'EM HARD!" - Besquared

    Now, go get 'em.

    Love and Prayers,

  13. Lynne, Bob, Jack and BenJuly 12, 2010 at 1:10 PM

    Grow cells, GROW. We are filling your space with prayers, strength and love and sending special kidney juju that the universe owes us.

    (p.s. Just love the socks of the day.)