Monday, August 20, 2012

Feeling "blah"

Beto spent the night last night. Beto was receiving a platelet and blood transfusion and they had to take her blood pressure once an hour, so Beto didn't get much sleep.

She was pretty tired this morning at 10:30 when I arrived. She slept until about 2:30 when Beto, Santi, and my sister Glenda showed up. Beto, Santi, and I had to get blood taken to see if we're matches to transplant bone marrow to Bela, IF she might need it in the future, which at this point they don't think she will. Poor santi just screamed and screamed and they had to restrain him, but then we told him that Bela gets poked like that many times a day and showed him some of her bruises and her central line, and he seemed very pensive. I hope that's ok and we didn't just scar the boy for life. It was amazing, though, when they walked in to Bela's room. She was really out of it but she sure perked up when she heard Santi! She followed him with her eyes and turning her head wherever he went and her eyes grew wide.

Her blood pressure is still way too high, so I met her "blood pressure/kidney doctor" today. In adults with high blood pressure the concern is usually the heart, but in kids Bela's size, the concern is with the kidneys.  She is on blood pressure medicine but I'm not sure that's working well yet. It is not prescribed for a certain amount of time like antibiotics, only until she doesn't need it anymore.

She received another one time dose of Lasix today to rid her system of extra fluids. She is still on three antibiotics for a total of at least 10 days, which makes her have a stool in every diaper just about. That combined with the Lasix makes for a very messy situation. My sister had to change her shirt after her visit today. Sorry! She also received another dose of Albumin today. It's a protein that a lot of kids like her receive. She is getting Tylenol mostly for fever but I am glad she hasn't seemed to need anymore Morphine.

I'm sure there's some medicine I'm forgetting about. I really hate that she's on so much medicine. They say that the same chemo that kills the bad cells could be what causes cancer in her later in life. Of course we are praying against that!  I have been thinking a lot about her diet and my diet, how that can affect her healing process and wondering if what I ate in pregnancy,or didn't eat, had anything to do with her Leukemia. I've been told I can't think like that, that it's not my fault, and I shouldn't feel guilty, but a mother still wonders.

 I know right now all she is getting is my breast milk mixed with a little bit of powdered formula for extra calories. That reminds me they added 1cc per hour to her feeding tube today, making that a total of only 4ccs an hour, which is maybe half a teaspoon? And she's not getting bottle fed at all anymore . That breaks my heart. A baby should be able to breastfeed, naturally. But I thank God that she is able to get my breast milk and pray that I can find ways to treat my body as best I can because I know that will effect her for better or for worse.  I've learned to not take anything for granted and not to complain. It is time consuming and inconvenient to have to pump every three hours, especially in the middle of the night, but then I realize that this is the healthiest thing going into her body right now. I feel like I get to actively participate in nourishing her.

The dr.'s want her to get the proper nutrition but don't want her body getting too many fluids or her stomach getting too full, which pushes up on her lungs and liver, making it hard to breathe and uncomfortable. She was still on .25 liters of oxygen today. They took more blood today for a blood culture. so far she hasn't tested positive for any infection. Her chest x-ray and ultrasound came back fine too.

The doctor said her abdomen felt really soft today and her liver and speen are still heading in the right direction, as is she in general, which is no small feat, at this point.

And I'll end with this: Today I was talking to my former "employer" for whom I cleaned house and taxi'd her kids. She works at the hospital where Bela is and said that Bela's "team" called a special meeting with all the staff of the entire hospital. She wasn't at the meeting but she overheard other doctors talking about it in the lunch room one day and put two and two together.  She said Bela's case is just so "rare-rare-rare-rare-rare"...1 in a  million."  And we are the "lucky" family that it got to happen to. But later Beto and I were talking and we still believe that this didn't happen by chance. We still believe she will pull through all of this, be healed, and now I know that not only HER doctors but the entire staff of the entire hospital will know about how God made her into a miracle child.

Thanks for all your prayers! it is a relief to be able to share in this journey with so many of you.

Please pray specifically for...

1. Her blood pressure to return to normal and to go off the meds
2. No more fevers or oxygen tube or feeding tube
3. No more fluid retention or Lasix
4. Her liver and spleen to continue to get to normal size.
5. She's developed some mouth sores(expected from chemo). please pray those go away. they are very painful.
6. Our family and whatever else may be on your heart.

We would love to pray for you too! Let us know!




4 comments:

  1. So many thoughts about your post: beautiful, touching but heartbreaking. I'm amazed they called a meeting with the staff of the entire hospital! And 1 in a million?! Grrrr! I do believe like you do Laura, they will all see her a healed, walking talking miracle baby. When I pray for Bela I rememeber to pray for no cancer later in life either. "Affliction will NOT rise up a second time.".
    I'm praying in agreement with all of your requests and pray her treatment will be done VERY soon. She has so many out here praying for her too!

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  2. Your post touch my heart in ways I didn't know were possible. Your ability to let us all in to the reality that is your life right now is so amazing. You are never far from my thoughts and prayers. Bela is blessed to have you for her parents and blessed by your family who are so helpful and supportive, and blessed to be in a really good hospital.
    We are praying so hard for MIRACLES for your family. That the God of miracles, brings His healing touch to your beautiful Bela and SOON.
    Sending you our love.
    Vince & Brenda

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  3. Your honest look at things helps me to keep my faith real. We feel blessed to know you guys and we are praying daily for Baby Bela. She is inspiring us all. Love you guys - Kim Lambert

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