Tuesday, August 28, 2012

still waiting...

Not much to report today. She had a good night with me last night. She was awake a lot but wasn't uncomfortable or in pain.  I finally crawled onto the "bedchair" at 4am. Let me say that very early morning TV is not very kind to insomniacs!  I tried to sleep, but got woken up about once an hour by the lab techs, nurse, doctors, food staff, and housecleaning. But Bela's a trooper, she goes right back to sleep.

Started to pout....

...then changed her mind.

For my sister Amy

In her new swing. We got her looking just a little bit more comfortable after this was taken.

The nurse giving her "liquid crack", aka Sweet-ease ("sweeties"), given before a painful procedure to reduce pain and  crying. We were taking the tape off her two blood drawing sites and her face. No more tubes!




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"No tubes or tape on my face!" The dr. likes her chubby cheeks. Even though she's been off feeds for a couple of days and will be for another week (but we're praying for less), she's gaining weight. She's a little over 10 lbs. now.




"awww...she's so cute!"


"Tickle Tickle!"
 She recieved platelets yesterday and today. She's having more low grade fevers more continuously and high fevers off and on. These "burn up" the platelets which is why she had to have two transfusions in just 24 hours.

She is still on blood pressure medicine and lasix once a day, as well as her nutrition and antibiotics. They added another antibiotic, Flagel (sp?) for a low risk type of infection around her central line. They will have to have another surgery once her numbers go up to remove her central line and place another one. This one is in a vein that's too small to draw blood, but they are still able to give her medicines through it. In the meantime they may place a PICC line in her arm. Today when they drew blood they just did it like they do in adults, in her arm and hand.

Her liver is still too big and they want to do a biopsy but will probably do it at the same time as when they place her new central line.

Otherwise things are fine and the doctors think she looks good, we just have to wait for her counts to go up.

Please be in prayer for her liver and her central line, that it will go down on its own and that the central line will start to work again like it did in the beginning, so they don't have to do surgery.

And I was thinking a lot about something I wrote yesterday: "They can't give her Tylenol because of her intestinal inflammati
on. So we are counting solely on your prayers and God's mercy and healing power!"  




We ALWAYS rely solely on prayers and on God, yet sometimes I as a mother want to "do something" in the meantime. I hope you hear my heart on this and know that we realize Bela is in God's hands.

Thanks again for all of your prayers. We know she will continue to get better. Praise God.

6 comments:

  1. Laura & Beto, I continue to be prayerful concerning sweet baby Bela! Oh my goodness, she is adorable!!! Those cheeks...I want to squeeze them and kiss them! And Santi is so adorable with her. You can tell he loves his baby sister! I love you guys and think of you so often and am so thankful I am able to follow this blog and know what's going on with precious Bela. God bless you all!

    Caption to the photo:
    "This has been fun. No, really...it has. But seriously, people...I can't feel my left arm!"

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  2. perfect caption Jeanne! you're so funny. love and miss you! thanks for your prayers!

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  3. Caption for just below the one you want a caption for "I did NOT like that tape on my face I tell ya" Maria!!!!

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  4. From one of your elephant/whale friends! hehe I LOVE that you can keep a sense of humor during this trial. I also want to let you know that you are my hero - seriously! Vince was in the hospital for 18 days and I nearly went crazy. You are all in my prayers - I often get "divine appointments" (which means God wakes me up in the middle of the night) and Bela is the name on my heart. So God is hearing a lot from me and SO MANY others. Sending love and hugs from Brince & Venda <3

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  5. Such sweet pictures. We continue to keep Bela and the entire family lifted up in prayer. We know God will heal her. Love and blessings , Kathleen and Randy Edwards

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  6. I meant to comment on this yesterday. I love all the pics, and the pouty one made me sad for her!
    I continue to pray for her FULL recovery with no bad side effects and all the things you ask for.
    Love and Hugs~

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