Friday, November 11, 2011

Continuous cpap and possible reintubation

Her sats are 68 even worse then last night. we are really concerned and hopefully they will round soon and make a decision. My concern is brain damage at this low of a saturation. Shes basically been below 72 for the past 8 hours almost  and shes at 66 right now.  They think she might have an infection so maybe that will fix it.  We'll see after they round and make a plan for today

10 comments:

  1. Hang in there...

    My daughter Madison just had her Glenn last Friday. When she cries, her stats still go in the 60s. For the most part they have sat between 75 to 82. Though, after a cath, she sat in the low 70s for a about a week (they are not sure why). She has had no cognitive effects at all (that we know of) and is actually either right on time or a little ahead developmentally. I expect her to get a little behind on some physical stuff since she will be limited the next 6 weeks.

    You are at a tough time right now. I think the first 4 weeks were the hardest for me. Yet, these kiddos are so strong and just amaze me. I have to remind myself that her treatment is not a sprint, but a marathon. I really struggle not getting caught up in each set back. I have learned that there will for sure be bumps - no question. Just take them each slowly. Celebrate the steps forward. We can love them and make them feel as safe as possible.

    Praying your day gets better. Hang in there and try to get some rest.

    Sincerely,
    Brandi
    www.caringbridge.org/visit/gandyfamily

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  2. Many prayers for all of you that they can figure out what is going on. I worried about brain damage too when Hope was satting low, but she is doing great developmentally. I really hope she doesn't need to be re-intubated, but if that will get her better...it is for the best.

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  3. MOM IS TAKING CARE OF YOUR OTHER BABIES SO YOU DON'T HAVE TO WORRY ANY ABOUT THEM.I WISH I COULD CLONE MYSELF AND BE THERE WITH YOU TOO. BUT I AM PRAYING AND SO MANY PEOPLE AROUND THE COUNTRY ARE PRAYING FOR OUR SWEET OLIVIA. YOU CAN ALWAYS CALL NIGHT OR DAY IF YOU NEED TO TALK. SING OLIVIA DELILAH'S FAVORITE SONG "MY,MY, MY SWEET OLIVIA,(REPEAT THAT THEN) OLIVIA I LOVE YOU SO, I WON'T EVER LET YOU GO, SO KISS ME SWEET OLIVIA I'LL NEVER LET YOU GO, SO KISS ME SWEET OLIVIA (BIG FINISH LIKE DELILAH AND MARLEE DO) I'LL NEVER LET YOU GOOOOOOOOOOO!!!!

    THAT IS TO THE SONG BY TOM JONES: DELILAH AND I JUST PUT MY OWN WORDS TO IT AND CHANGE THE NAMES FOR EVERY GRANDCHILD. AND THEY LOVE IT ESPECIALLY THE BIG ENDING.
    LOVE YOU MOM

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  4. Hang in there we love and are praying for you guys~
    Shala

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  5. Samantha Wiggins BradleyNovember 11, 2011 at 12:41 PM

    Any more updates Brett? We're praying for you guys! Olivia is beautiful!!!!! Love & miss you guys!!!!! Love all the pictures!

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  6. It's not easy but you're doing great. She knows you're fighting with her. We are saying lots of prayers and know this rollercoaster ride all too well. Zoe went back into the cath lab for lowering sats and her shunt was kinking. You're right where you need to be. Prayers for all of you and sweet Olivia. Hoping antibiotics and a cath help get her more stable.

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  7. Thoughts and prayers from Xavier. We had many set backs post norwood. Now we are 4 weeks post-op from his Glen. CHOP is where you need to be. Take comfort in knowing the entire heart community is supporting you and praying for Olivia each minute of the day. I just spoke with my paster..she is on our prayer list! GOD BLESS.

    xaviersheartjourney.blogspot.com

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  8. Oh I know how hard it is when you do the ICU dance - two steps forward, one step back, one step forward, 10 steps back. Hang in there - she's in really great hands and although YOU are not yet used to the ICU dance, her doctors and nurses absolutely ARE and can intervene as needed. Just so you know, my little guy Bodie routinely satted in the high 60's and low 70's off and on when he was interstage (and still drops down there if he's sick or having a pulmonary hypertension attack) and shows NO signs of brain damage. In fact, other than having A LOT of energy and difficulty focusing (which you'll find is pretty common among cardiac kids and, actually, probably 20 month old little boys in general!), we have seen no cognitive delays. If anything, he seems smarter and more verbal to me than most kids his age. So try not to worry too much about the brain damage concern (I know, easier said than done, right?) Praying for you all...

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  9. Oh, also I wanted to let you know that Bodie suffers from EAT and has off and on since he was a newborn. They believe his is caused by a genetic cardiac rythym issue he inherited from my husband (in addition to the HLHS). Along with the EAT, he gets bradycardiac - so he has a pacemaker to control the bradycardia is on Propranalol for the EAT and it more or less holds the EAT at bay (or shortens the episodes when they do occur). So if you need to talk to a BTDT parent about EAT, SVT and rythym stuff, please feel free to email me - amykbennett@gmail.com

    Heart hugs!

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  10. Hang in there and be strong! Reintubation is common for these heart babies they say breathing for them is like running a marithon. Cameron had to be reintubated with the first attempt after the Norwood. He had fluids build up in his chest cavity which needed to be drained with new pig tail chest tubes. Just a few days later he was stronger and successfully extubated. Also, the low saturations were a concern for us too but Cameron is doing great so just know that things will be okay. If y'all have any questions again just let us know we are keeping your family in our thoughts and prayers.
    Best of Luck, Mogg Family (BabyMogg.wordpress.com)

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