Friday, June 29, 2012

ICU--the staph re-return

So last Friday (yes, a week ago) we had to bring Liv back to the hospital. At that point she was having some fevers, but mostly just having constipation. It was decided later that she had an infection in her bladder that was causing the fevers. Yep, you guessed it-- staph. After a day and a half on a regular floor and just trying to get her to clean out her intestines, Olivia started to having respiratory trouble. After a swab of her sputum from her trach, the test showed she had virtually "everything" growing. Now, I'm still not exactly sure what that means-- they haven't ever told us that before, but suffice it say that she was very sick.

I'm not exactly sure because the stress and lack of sleep had burred the days, but I think it was Sunday when Olivia was taken to ICU for respiratory trouble. One lung was really hazy on the x-ray. She was also having massive fevers and still stomach problems. Sunday and Monday were very concerning for Brian and I. Obviously because Olivia was so sick--they put her on bipap and she had to be on 100% oxygen, which is really bad. Also, because we have been struggling a lot with how to maintain Olivia's quality of life through illnesses. We decided a while back that we would not let her suffer like she did in the long admission (from January to April) being sedated for most of that time, and paralyzed and on the ventilator for a month. We were concerned (and still are some) that we would need to make decisions for Olivia to stop her curative care and concentrate on making her comfortable-- essentially taking her off supportive breathing machines. I think it was Monday or Tuesday they put her on the ventilator and some gas to help calm her pulmonary hypertension and she was needing less and less oxygen.

She has since stopped having fevers, has been taken off the gas for hypertension, and has had her oxygen turned down to 35% as of this morning. However, now both lungs are affected and she is
still on the ventilator. The trach makes this admission appear WAY different than the last one--she is on a small amount of sedation to help with anxiety and pain, but besides that is awake--she has no tube down her throat, it just connects to the trach. These changes make things more comfortable for Olivia, but also, I think, make the seriousness of her illness look deceiving. Even I felt that the ventilator was no big deal on the trach--it doesn't look scary at all, but that doesn't mean Olivia isn't still suffering.

It seems that Olivia is improving from earlier this week. Brian and I are concerned, though, that the staph will keep re-infecting her and she will continually be in the hospital, which is certainly not what Brian and I want for her, and I don't think what she wants for herself. If she doesn't let her lungs heal all the way between these admissions she will continue to get weaker and weaker.

We have never needed your prayers like we need them now. Please pray for Olivia, for total healing, for comfort, for strength. Brian and I are also desperate for your prayers. We need comfort as well, and wisdom and insight that only God can provide. We are so broken and want desperately to also make the right decision for Olivia, even if it is a difficult decision for us. We can make decisions to limit Olivia's care, but we need help knowing when and how and IF we need to do that.

Bet you hadn't bargained for this much honesty when you started this blog post. Sorry I didn't give you a heads up-- I hadn't planned on writing all that.


  1. Crying and praying along side you.

  2. Wow, Kelly. Thanks for sharing all that. I am praying for God to give you and Brian a spirit of wisdom and revelation in the knowledge of him (Eph. 1:17) and that he will bless you with peace about the decisions you make (Psalm 29:11). The Lord is the strength of his people, he is the saving refuge of his anointed...Be their shepherd and carry them through this Lord." Psalm 28:9

  3. Praying for you all!
    -The Sanders Family

  4. Oh my goodness. Can't imagine hurting like this. Praying for you ALL.

  5. There are no words. Praying for your precious family.

  6. God loves Livi, he gave her to the two of you. You love her and will know the right things to do for that reason, you love her. Praying for peace for all of you.

  7. Leesa PuffinbargerJune 29, 2012 at 4:05 PM

    I too cry as I read what Olivia endures and you as parents go thru. I can't imagine either. You have my prayers. Our Heavenly Father placed this precious child in your care because He knew you both would care for her and be a testimony for Him. I do not know you but am in awe of your faith, love and strength. I know that comes from the Father hearing our pleas and answering and I know He will continue to guide you and give you that wisdom, strength and I ask Him to send you His peace,comfort,rest,endurance,and joy! May the Lord's Blessings flow down on your families as you are all lifted up in prayer! I do know Maragret and Don, that is how I came to know your story. Thanks for allowing me to pray for Olivia and your family. Leesa Puffinbarger

  8. Kelly - Thank you for your honesty. This tells me exactly how I need to pray for your family. I am praying for wisdom, guidance and strength as well as peace. Olivia is blessed to have parents like you and Brian. Love you to all.

    1. thanks for opening up, kelly. I know that was hard. Crying and praying with you. I love you and your family very much!

  9. i love that you are being honest about this. it needs to be written out. we are praying for clarity and wisdom in your decisions and praying that God would make it abundantly clear what your next steps are.

  10. It's all still sinking in. I know you are still in the midst of figuring all of this out. That each new decision that you put into words is a huge tidal wave of "stuff". I'm out here bobbing along in this storm with you, helping when and how I can. Liv and your family are always on my mind.

    Jack always has a song for us, right Liv?

    With everything ahead of us
    We left everything behind
    But nothing that we needed
    At least not at this time
    And now the feeling that I'm feeling
    Well it's feeling like my life is finally mine
    With nothing to go back to we just continue to drive
    Without you I was broken
    But I'd rather be broke down with you by my side
    I didn't know what I was looking for
    So I didn't know what I'd find
    I didn't know what I was missing
    I guess you've been just a little too kind
    And if I find just what I need
    I'll put a little peace in my mind
    Maybe you've been looking too
    Or maybe you don't even need to try
    Without you I was broken
    But I'd rather be broke down with you by my side
    With everything in the past
    Fading faster and faster until it was gone
    Found out I was losing so much more than I knew all along
    Because everything I've been working for
    Was only worth nickels and dimes
    But if I had a minute for every hour that I've wasted
    I'd be rich in time, I'd be doing fine
    Without you I was broken
    But I'd rather be broke down with you by my side


  11. i am heartbroken as i read this post. i realize this is "old news" now, but it is still so hard to hear what you all are/were going thru.