Tuesday, May 15, 2012

Friends come from many places

First of all heres the latest on Olivia who I asked you to pray for, please continue to pray for this precious girl & her family! For those that may have missed my blogpost on Having Faith I encourage you to read it & update to add her mom has blogged some since I wrote that post so if you don't follow me on Facebook & want to be kept up with the latest I encourage you to visit & follow her blog as well.

  1. Here's the latest on Livy. She has now been on the conventional ventilator since Friday afternoon. She was stable through Saturday so they began to slowly start to ween her then. Last night she decided she didn't like that and her stats started to drop, causing the docs to bump the vent settings back up to where they were Friday. A couple steps forward, and a couple steps back.

    Because of an e......lectrolyte imbalance caused by the dialysis, they did not dialyze her yesterday, which caused her to gain another 1.4 kg in a day (roughly 3 lbs.). The docs are hearing more fluid in/around her lungs today and the chest x-rays have looked a little worse each day. They believe the influenza has probably run it's course by now and are attributing her current lung issues mainly to fluid overload caused by her Nephrotic Syndrome. Therefore, their biggest cause for concern is her fluid gain. They will be giving her another protein infusion today and possibly doing dialysis again tonight.

    The docs are saying she'll be on the conventional vent for another few days at least before they consider trying to pull her off of it, although, they also said they need to get the fluid issue under control before they feel comfortable taking her off the vent. Because of how complicated and intertwined her kidney disease is with the fluid overload and lung problems, it's going to be very tricky to address that.

    They have also decided to keep her in isolation indefinitely now, not so much to protect everyone else from her (the influenza) as it has been, but now it's to protect her from everyone else since she is so immune suppressed. Looks like we don't get a break from the masks, gowns and gloves any time soon! They have, however, been able to get a better hold of her sedation and they believe they've been able to find a good balance for her.

    We have been encouraged that Livy is indeed making progress, albeit slowly. Please continue to keep Livy in your prayers. Specifically that the docs would be able to control her Nephrotic Syndrome enough to get her off the vent. And pray for wisdom for the medical team as they continue to evaluate and assess what else, if anything may be contributing to her lung issues now as well as figuring out how to safely and effectively treat both her ARDS and Nephrotic Syndrome together.

    So I kinda wrote a response, in my Mothers Day Post about my dear friend Jane but wanted to write a response to all who left comments on my post Why?. First of all that day I just felt like I had to let all my emotions come out so I appreciate all your comments of encouragement. I do know that many of you have been sharing or posting or donating & I am not saying your not doing that. (just wanted to clarify that cause I know who you are & appreciate all who do!) I also wanted to state again that I have tried to reach out to other groups, not related to Reeces Rainbow but have gotten little response so I keep trying. I did share on the my memories facebook page the timeline cover I made with the girls photos & got response from that so thats good. About comments, though I appreciate when I do get comments showing your love & support, don't feel like you need to comment on every post I do unless you want to. I know not everyone has the time to leave a comment cause you have your own lifes to live but I am greatful to you for taking that time to respond. Still no orders on the digital scrapbooking but if I do get any I decided I will just give the whole $20 cause I rather do that than use my money to buy more kits for the program. I will just wait for more free kits! This journey of advocating as brought many new friends, whether I meet them this side of Heaven or not I will always be greatful to them. Friends from the UK all the way to here locally, some I know online more so than others & feel like I know them in real life. I know its Gods timing & next to him I am so greatful for all of my friends from many places that I can just share whats on my heart, my struggles, & my successes about this crazy loveable & unforgetable journey of advocating & fundraising for Reeces Rainbow kids. Really wish I could all just give you a hug right now! I don't know how I could have done every fundraiser or blogpost or whatever without YOU! My loyal readers, you are the ones that keep me blogging, even if you read & never comment I appreciate you taking the time to read what I have to say on my blog. Even if I am not a great blogger & not as wordy with my posts or have lots of official followers or a fancy blog or whatever, I THANK YOU FOR READING!! I am certainly trying my best of what to blog about, & want to thank Jane for putting the idea in my head for the Mothers Day post as I was not sure how I wanted to write what was on my heart putting different perspectives about that day into one post. Oh & one more thing even if you don't scrapbook can you please share my fundraiser for Cora Lynne that ends May 31st? I can't say enough good things about this program!

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