Tuesday, May 18, 2010

A lesson in patience

Oh wow, was today ever a tough day. Bodie is NOT a fan of his ng tube feeds and threw up during 2 feeds today. He also doesn't want to eat from his bottle at all. It makes sense - if he has an upset tummy, he doesn't want to eat and he will throw it up if we force it in. (And we think we're so smart going around the bottle!) They're putting him on iv fluids tonight to let his gut rest.

They are now thinking this is definitely milk protein intolerance, especially since I cut dairy out a couple days ago and his stools are now back to normal. But I guess his entire gut hasn't realized that yet.

He's also been having more of his horrible fits - they're so scary. He turns burgandy, is completely inconsolable, starts sweating profusely and then turns pasty white, rolls his eyes back into his head and goes to sleep. I swear each one of these fits ages me 10 years - so I figure after today, I've got to be close to nursing home age! I talked to the pain team about it today and they think he was dropped too quickly on the hydrocodone, so adjusted his dosage back up. I'm not sure it made much of a difference, so I plan on asking tomorrow if we can use a different drug.

So if you're following along, we brought a slightly fussy baby who loved to eat with blood in his stool into the ER; 3 days later he's been replaced by a manic-depressive kid who alternates between smiling at the nurses and throwing his fits; oh, and who won't touch a bottle with a 10 foot pole. What the what? Are you starting to understand why Amy is at the edge of her sanity?

Clearly, we need prayer tonight:
1. Pray for Bodie's tummy. Pray that it settles down so that he's not so uncomfortable.
2. Pray that Bodie starts eating well again.
3. Pray that the pain team can get Bodie's withdrawal under control so that he stops having these scary fits.
4. Pray that Amy has the patience and grace to handle all of this. Days like today make it kind of hard to stay positive and hopeful. Just pray that I am able to better trust God and His plans for our sweet little guy!
5. Pray for Dusk, who has basically turned into a single parent yet again since Amy has been unable to leave the hospital given Bodie's current state; and Sierra, who is really missing her mommy and her family unit.

Thanks and God bless,
Amy
Sent from my Verizon Wireless BlackBerry

5 comments:

  1. So sorry Amy. Hospital life is tough on top of having a sick child. Every day is brand new with lots of blessings or burdens... It seems like once you think you know what to expect the Doctors or the child throw a monkey wrench in. I sure hope Bodie heals up quickly upon them finding out what in the world is going on with his poor little tummy! I am praying for you and your family Amy, and you are also on my Church's prayer list! Love you!
    ~Sharon

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  2. My dear Amy. I wish I could lift some of your burden for you. We are praying for my Bodie always, and we are praying for you, Dusk, and Sierra. I ask for healing on Bodie, and that he eats and gains weight. I ask that you all get to be home together soon in peace, and in health. I have a group of non Del Rey friends who are praying as well. So know that you are surrounded by love and loads of prayers. YOU WILL GET THROUGH THIS! I will pray for all your requests and pass them on. All my love... and sweet Bodie, I pray that you will have a peaceful, pain free, and a successful day today. Sending you big hugs, my love. Nairi

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  3. We love you so much Amy. We continue to pray for Bodie, you and the family and pass prayer requests on to the body of Christ to lift your family up. I pray God carries you right now. You are an amazing mom and friend and are deeply loved. Love, Bonnie

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  4. I'm so sorry that the yucky stuff keeps finding you guys. I've been following you guys right along, and have been praying for little Bodie since he was born.
    My heart baby also had a milk protein allergy, to the point that I had to go completely dairy free for over 7 months. Make sure you are looking for hidden dairy. There's milk in most breads, chips, gravies, pretty much everything processed. It is possible though.

    I don't understand how he could develop a milk protein at this point though. If he is allergic tto milk protein, it would have been since birth. Elijah's symptoms were VERY noticeable, right from the first time he got breastmilk. Very nauseous, vomitting, diahrea, respiratory issues (mucous in his lungs), congestion, and bloody stools. If it were me, I would keep looking for a different cause, because from the sounds of it, I really don't think that the milk is the culprit.
    Praying you guys are able to find answers, and get home soon. I know how frusterating it is to get home, just to have to be admitted again.
    If you have any questions about the milk protein allergy, my email is samnnaomi03@hotmail.com
    Hang in there.. this too shall pass.

    In Him,

    Naomi

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  5. I'm sitting here with tears streaming down my face yet singing "Jesus loves Bodie, this I know..." I'm proclaiming the victorious presence of Jesus all about each one of you. Love,Karen

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