Sunday, September 12, 2010

September 12: Day +72

Sunday, blessed Sunday.

Ah, to sleep in on a Sunday morning.

"Honey, turn OFF that alarm!" I say to my wife as we hit the pillow last night. Having checked in with the night nurse at 11pm, and knowing nothing new was scheduled or would be changed in Bella's care plan at rounds on a Sunday morning, COMBINED with the ugly knowledge that rounds would be at 8:15am, ON TOP OF the fact that we all wore ourselves out at Logan's... I decided to just give. myself. a break.

It felt so good to wake up and not have to immediately jump out of bed. To just lay there with Ali and Ang was such a nice way to start the day. Ali likes to come pile on us and either sleep between us or play on top of us on the weekend mornings, depending on how much of a rock star she was the night before.

I didn't miss a thing at rounds. Bella was doing fine, and there wasn't much to chat about, really. We are trying to sneak off a little fluid (about 90-120 mL) by the end of the day. Bella slept a lot today since she was up a lot yesterday. As of 9pm tonight, we are -9 mL for the day. Hopefully, we'll get up to about -30 by midnight.

The talk is still that surgery "is scheduled" for Thursday. I asked Dr. Wagner to talk to Sam to see what would Bella have to show the team over the next 72 hours in order to receive another "stay of execution." He said he'd talk to him about it. I know a lot of it hinges on Bella's blood pressure being able to withstand us pulling fluid off at a faster rate then we are right now. The theory is currently that her hypotension is probably related to the 4 different sedatives she is on right now, and if we could "wake her up," her blood pressure would come back. Well, we can't wake her up with a tube in her throat that is still causing cuts even now at her current level of sedation. If her blood pressure comes back, we'll be able to pull off fluid, and if her blood pressure comes back, we will be able to try hemodialysis. Getting off Prisma is one requirement to get out of the PICU. So is getting off the vent. We can use the trach to wake her up. If that stimulates her blood pressure, we can get fluid off. If we can get fluid off, we can talk about extubation. Also, if we stimulate blood pressure, we can try hemodialysis, so the trach might be the shortest path to getting out of the PICU, even though it feels like a step backward for some reason. Sorry if that was repetitive or roundabout or even confusing. It is definitely a house of cards.

Anyhow, 24 hours after deployment, Bella's swimsuit head gear is rockin'! It didn't cause any dents, blisters, shears, or collateral damage, and it definitely holds the breathing tube securely enough. Plus, it is simply FABULOUS.

We had another amazing BBQ today at Deb and Spencer's house today. You may remember we met their family at Minnehaha Falls a few weeks ago, and their son, Collin, and Ali hit it off like gangbusters. They invited us to their BBQ in the park that evening, and invited us to their home today. Well, it was just fantastic. First of all, they have just about the cutest house with the greatest backyard a kid could ask for. Ali and Collin (and baby Aubrey) played with bubbles, on the swing hanging from the giant shade tree, played in the swing/tree house/slide/jungle gym, colored with chalk on the driveway, played tag, attacked daddy, etc. Then Spencer and Deb THREW DOWN with a fantastic meal off the grill! The kids had a blast, the parents had a blast. It was GREAT fun. Again, we are just so blessed to have been invited into the homes of such great people like Bob and Lynne, Howie and Laurie, Logan and Erin, Mark and Lisa, and now Deb and Spencer. Life is good.

When was the last time you counted your blessings? One thing 9/11 taught me was that tomorrow doesn't necessarily follow today. I kiss my family and tell them I love them every single day, because I don't know when the last time I'll get to may be. There were thousands of families whose daddy or mommy, or son or daughter, or husband or wife, didn't come home from work that day. I know I am blessed for every single day that I still have my family. No matter how 'bad' we may have it, I work hard to remember how 'good' we still have it, and I give thanks at the end of the day for the beauty that I find within it.

Count your blessings. There are more around you than you realize; Be still and look. You'll see them. God's job is to bless you with them, your job is to notice.

God night.












10 comments:

  1. I love the joy in these pictures...makes me sleep peacefully.
    Glad you got to sleep in, it certainly is the little things in life, isn't it?
    Team Bella is growing! So happy to see that!
    We love you guys...here's to a good week.

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  2. god's blessings are truly all around. here's praying for a great week for bella and all of y'all :)

    susan
    w-s, nc

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  3. Jack and Molly's NanaSeptember 12, 2010 at 10:15 PM

    What an amazing weekend! So glad to see all the smiling faces in your beautiful pictures, and to see how relaxed you look. Tonight (and every night) I'm thankful for MY wonderful family! I don't think I've ever taken them for granted, but by walking behind you, I'm much more appreciative of the blessings we have. Here's to a fabulous week for all of you.

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  4. So nice to see all the smiling faces. You guys look like you had a blast. So happy for you.
    Will be thinking and praying for beautiful Bella even more this week with Thursday fast approaching. Keep the Faith. Love and peace. Love Leah's Nana

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  5. Hi there,
    I read you from across the Atlantic. I am from Portugal, and there isn´t a day that i don´t came here to read about Bella. I pray for Bella and for all of you everyday.

    May God help you always through this jorney, and i am sure that Bella is going to get better.

    I great kiss from Portugal.

    Sandra Coelho

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  6. Praying for a great week. I love how much fun Ali got to have this weekend; it reallyshow thru in the pics! And... are you and Spencer wearing almost identical outfits??!! :) haha
    I love it!
    Anyways we are holding positive thoughts for Miss Bella!
    Love you all,
    The Vanderbooms

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  7. I want Bella out of the PICU now!!!! What a hard situation... she is getting there, I bet its so hard to be patient. You both are amazing!

    Glad you had fun, it was great weather! I had a dream last night that I was holding Bella and she was smiling at me and grabbing at my face like Corynn does, and she was so sweet.

    Hope today is another great day for Bella!
    Amanda Schauer

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  8. I LOVE the picture of you laughing!! It made me smile, and I'll remember it on a bad day.. I mean, if you can still smile and laugh and see the beauty and magic in life all around you, so can I. =) Thanks for sharing. All the best to Bella!!

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  9. I have been following Bella's journey for quite a while now...just never posted a comment! I do believe that Bella will have the most awesome testimony to share of God's miracles in her life. No matter the circumstance God is in control and it really is up to us to find the blessings that lie in front of us each and every day. My prayers continue to be with Bella and your family.

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  10. I have also been following Bella's journey for a while. I never leave comments but my day starts with visiting Bella's, Rafis, and Dylon blog. You guys are amazing parents!


    I pray for Bella and all EB kid's recovery with a blink of an eye. I wish I could do something to help but only God is in control. I pray that our beautiful little Bella is up and running with perfect health, Ameen.

    Thank you for taking the time to update this website. We feel your pain and wish and pray that this difficult time passes very soon and Bella is in your lap smiling and playing, Ameen.

    May the future only bring peace, happiness and perfect health to your family.

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