Thursday 6 December 2012

Blood!!!

Tonight I am updating from the comfort of home.  After two nights of almost no sleep and my sanity quickly draining, our friend Maria offered to spend the night with Hope.  I'm assuming she really likes to pull all nighters!  Please pray that Hope would sleep for her benefit and Maria's.  Sadie is quite sick and put herself to bed before dinner.  I wanted to be home with her in the morning as she's constantly crying and wants her mama.

This morning Hope's PICC line was still not working and after a failed attempt to draw blood from her artery, they decided to try a clot buster.  This has been used in Hope's line before but was considered too dangerous if we had other options.  The clot buster (TPA) is put into her line and left for 2-4 hours, after that time it is removed.  The fear with her line not drawing back, is that the TPA would be stuck in the line and eventually flushed into her body.  The doctors decided that the benefits out weighed the risks and went for it. We have to give glory to God for the miracle that occurred...BLOOD!  The doctors were finally able to send all of the tests away that they needed and we are now treating her in a much more informed state.

Hope continues to struggle with her breathing and is receiving a lot of assistance from oxygen.  Her lungs continue to look wet on X-ray as well.  At this point they aren't sure if the new set-up of the heart is causing the fluid to collect, or if we're missing something else.  Everyone is scratching their heads as they try to "fix" Hope.  The staff are working hard to find answers, but continue to come up empty.  Please pray for wisdom and insight as they look into different options or potential treatments to move past these issues.

After another restless night, they wonder if the motility agent that is helping Hope digest food, is also causing her some pain.  We've decided to keep her on it for now and will pray this is not the case at it is allowing us to feed her.

Having two little girls that need you is incredibly difficult.  One of my mom's dear friends came to the hospital this afternoon to sit with Hope while I took Sadie to the doctor.  She was coughing so hard in the waiting room, that she threw up on my purse, and then on me!  I guess when I have some free time I'll go purse shopping!  The entire time we waited she continued to say, "I want to go to the doctor, I need medicine."  Her lungs are clear, ears are fine and throat appears fine as well.  She has caught a bad virus and will just have to wait it out.  There is a chance that she is developing croup, which she's had before.  Please pray against this, it is so hard to be away from her when she's not feeling well.  I'm torn between being with my sick Sadie, and advocating for Hope at the hospital.  Some days I wish I could clone myself.

I'm hoping I will wake up refreshed tomorrow.  I realize that my daughters will still both be sick, I'll likely still be tired and life will remain difficult.  Regardless, I would like to start tomorrow with a positive attitude and the faith that God is in control and is walking beside me through each step.  I need to be reminded of that right now.  Thank you for caring, we know that Christmas is busy for families and we appreciate that you have not forgotten us and continue to pray.

18 comments:

  1. I seriously cannot go to bed until I get an update - lol!
    Praying for Sadie - and Hope's fluid levels and restlessness...
    As a somewhat humourous side note: last week the title of this post would have freaked us all out. This week, we praise God to see it. Crazy - but an honor to carry you guys to the Lord daily.., if not hourly. :) sleep well in your own bed, Amy!

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  2. And I can't sleep until Mrs.Manz posts your updates on her FB page! :)
    Continuing to pray!!

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  3. Amy, there are so many of us who will never forget you and your family, and neither will God. He never leaves nor forsakes us. You can be assured that He is walking with you every step of the way and at times He is carrying you. You can continue to count on being surrounded in pray by people all over this world. I know for me "I thank my God upon every remembrance of you". It is a privilege to pray for you, Hope, Shawn, and Sadie. I will continue to pray for all of you and for the medical staff. I appreciate your openness to share how you are coping, and what needs to be prayed for specifically each day. May you sleep well and feel God's arms around you.

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  4. Definitely not forgotten! In fact I'm pretty sure God woke me up at 2:00 in the morning just for you guys! Prayers are coming your way! - Kimberly

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  5. praise for the blood! prayers as soon as I finish typing this...prayer for God's grace this morning to refresh you, for Sadie to get better quickly, prayer for more answers from the blood tests, for Hope's healing as always...with love to you and your family, in Christ.

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  6. This morning I was struggling with a sick little toddler who has kept us up the last two nights. As I continue to juggle my work, my husband's shift work, my poor sweetheart who can't breathe and the exhaustion I feel, I was brought to tears reading your post. I have been checking at least daily for updates since I found your blog a few weeks ago. I delight in your joys and weep with you in harder moments. This morning you also have me counting my blessings.

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  7. Not a day goes by that I don't pray for your little girl and I'm confident that is the case with thousands around the world. "For I know the plans I have for you, says the Lord." Stay strong Amy!

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  8. Praying for Sadie and Hope, Mom, Dad, grandparent, doctors, nurses and all who care so much for this family. Praying for the prayer warriors who are so committed to walking with Hope and her family through the challenges ahead. God's peace and comfort for you all...

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  9. I lift your family up in prayer daily! Reading your blogs about your daily struggle with Hope's condition, the roller coaster of emotions you experience on a daily basis, and your never failing love for the Lord is very humbling, and inspiring. I will continue to intercede in prayer for your precious family as if they were my own. God bless you all, and please give Hope many kisses, and let her know she is being thought of, and prayed for by many people. She is a tough little cookie, hanging in there, awaiting her miracle! God Bless!

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  10. Hey Amy,

    We are constantly praying for you guys! So thankful for the miracle of blood and still hitting our knees for all the other issues to find some miracles.

    This might sound crazy, but I just read something about helping people get over viruses...it's a long shot, but if it will help Sadie feel better and allow you to care for both of your girls, why not :) I have heard that if you cut the ends off an unpeeled onion and put it in a jar beside the bed of teh sick person (Sadie in this case), the onion will basically soak in all the viruses floating around and the person should feel better after one or two nights. It won't smell great, and it's a Pinterest idea, so I have no idea if it will help, but apparently the onion is to turn black-ish from all the gunk it picks up. (needless to say it's not to be eaten after that!)

    Hope this works and helps, even a little!
    Praying for you all!
    Ariane

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  11. Praying that Saddie will be much better today, that you feel rested, and that Hope is doing better.
    I can't imagine all of what your life entales but as you go through each step, know that we are all praying for you.
    What ever the outcome of all of this....God is still God. Your faith in Him is very evident, and we all are commited to praying for your ENTIRE family....Shawn as well.
    May God give you the strenght and wisdom to know what to do, and when to do it!
    Love in Christ!

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  12. 'He will feed his flock like a shepherd; He will gather the lambs with his arms, and carry them in his bosom and will gently lead those who are with young.' Isaiah 40:11

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  13. Not everyone who reads your blog posts a note each day, thats not possible so i feel compelled to tell you that you MUST know that there are hundreds, probably thousands of people reading and praying and thinking of you many times each day.
    Sooooooo many people are thinking of you and your family! Praying so much and so frequently so remember, please, you are never alone in spirit.

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  14. Continuing to lift your family in prayer. I can't imagine your exhaustion right now, not to mention worry. Praying for you tonight Amy.

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  15. "I can do all things through Christ, who strengthens me." Phil 4:13 I send this verse only as encouragement and will pray for His strength to sustain you all.

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  16. Really hoping and sending healthy vibes especially to you tonight.. :( I know my old midwives swore by using oil of oregano as they said they could never get sick... Glad you're getting a breather at home... hoping for a holiday miracle of health for your family this season..

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  17. Isaiah 40:31 But those who wait on the Lord
    Shall renew their strength;
    They shall mount up with wings like eagles,
    They shall run and not be weary,
    They shall walk and not faint.

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  18. My thoughts and prayers are with you everyday. I have two children almost the same age as your little ones and I can only imagine how torn you must feel and how overwhelming of a journey this is for you. My heart aches for you as one Mommy to another. I pray for your beautiful girls. I pray that Sadie feels better soon and for Hope to begin to heal and make progress every day. One day at a time and one step at a time. You've touched so many peoples lives and are surrounded by Gods love and so many peoples prayers. I wish you strength and rest, and may tomorrow be a brighter day for you : )

    God bless.

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