Wednesday, August 29, 2012

A full day



We had a great visit yesterday with our wonderful friend Scott 

Nobody spent the night with Bela last night. It was nice for us both to be home with Santi.  The day nurse yesterday told me that the night nurse was going to be in Bela's room at least once an hour to give a blood product or an antibiotic and that if we were expecting to sleep then we better not come, plus with them in the room a lot we knew she wouldn't get lonely.

She did really well and didn't have to have any pain meds. She does have a new infection, a blood infection. If we go to visit and stay in the room we don't have to be too careful. But if we go in and out of her room, say, to the family kitchen where we are touching common items, like the coffee pot, we have to wear a gown and gloves while with her so that we don't spread the infection to other Immune compromised patients.  The doctors switched some antibiotics out and are giving her some new ones. I don't really take notes anymore because I know the doctors don't want to stand around telling me how to spell all of the medical words, but they give me print outs of all of her side effects and medicines and I keep them in a folder at home.

She did have a "Peripherally Inserted Central Catheter", or PICC line this afternoon so they can draw blood from it since they're no longer able to through her central line (seen on her abdomen in the foto above.)  That's why she received more blood products through the night last night so her body would be ready for the procedure.  The line is inserted in her arm and threaded through inside up by her neck and hangs down inside next to her heart. She can also receive fluids/meds through it .

She is still on blood pressure medicine but only had a low grade fever today.  She is still receiving Lasix once a day since she is still receiving so many fluids.

The doctors and other staff, who are ALL wonderful!, are all still very positive about her prognosis and say she is stable. They have seen other patients go through what she's going through so they are very well equiped to take care of her.  She only finished chemo 9 days ago and we were told it could take about 3-4 weeks total for her to recover from chemo, so starting next week she should start showing signs of improvement: no infection, no fever, no meds, and all all of her blood counts should start going up by themselves. I am looking forward to next week! yea!

I learned today that just in the family of Leukemia, there are different types and subtypes. Kids with Acute Lymphoblastic Leukemia (ALL) only have their blood counts go down for a short while and then shoot back up, while kids with AML like Bela have their counts go down and stay down, which is why they are more susceptible to infections, etc.

So excited to go to the Aquarium! Santi took this.
We're taking one "family day" a week.


Playing outside on the playground where some fish "statues" shoot water.

Sharks!!!




A sleeping seal or sea lion?


Beautiful jellies with electric currents that shine colors when running.

Petting starfish and anenomes 

GIANT crabs



Feeding broccoli to a ray

Fighting over the broccoli

I found this handsome thing at the fountain outside. Lucky me.

Enjoying the shooting water (not pictured)

Beto's first upclose encounter with a lighthouse.




Never a dull moment

Many of you may know that my cousin Bailey was injured in a car accident a couple of weeks ago. she is currently at Memorial in the Rehab wing, doing very well. Tonight we went to a fundraiser for her at Mimi's Cafe where she worked and we had a great time. You can tell my aunts had an especially good time though. 

3 comments:

  1. I LOVE the picture Santi took of you before you left for the aquarium! That picture captures the true Laura - your spirit and your joy and sense of humor all captured perfect in that photo! Continuing to pray for Bela and all of you. I love that you are taking one day a week to get out as a family, what a refreshing idea. Love you!

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  2. Oh such awesome pictures!!! I'm glad you are having a family day once a week and that you both got to sleep at home last night!

    Can't wait for Bela (and you all) to be through this trial on the other side.

    And I thought that was Scott. When does she have to go through chemo again?

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  3. Caption for second to last pic: snort, snort, snort, WHAT? WHAT?
    Great pictures!!!! Howdy to scotty watty doo doo

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