Monday, April 29, 2013

Rough Shape

Oliver woke up with a fever of 102* and extremely rapid breathing. We knew instantly that something was seriously wrong. Within the hour our hospice nurse and day nurse were at the house. His gtube site was leaking black/yellow indicating bile and a possible obstructed bowel. It was very difficult for them to assess his lungs because his breathing was so gurgly in his upper airway. His respirations/minute were very high, his chest was retracting and he was clearly in distress.

The nurses were fairly certain they could hear lung crackles despite his gurgly breathing and called his Dr to see if we should get a script for an antibiotic like we usually do for lung crackles. The Dr was alarmed at his respiration rate, chest retractions, and the fact that Tylenol and Motrin hadn't made his fever come down. She suggested that we go to the ER. We talked about it, we really want to keep him home. Most of the interventions that could be done at the hospital and not at home, are interventions we aren't willing to do. A terminally ill three year old doesn't belong on life support in a cold hospital room, he belongs at home in his Mommy and Daddy's arms.

So we said no, and asked what we could do at home. We've been alternating tylenol/motrin and his fever is down to 99. With a suppository we were able to get him to move his bowels, and so we got 3oz of pediasure into his belly to keep him hydrated. But all day long those measly 3oz have been coming up his esophagus and out his nose and mouth. He's silently aspirating right before our eyes. No coughing, no vomiting, just formula silently coming up and out, and also going back down into his belly or lungs, likely both. There is nothing we can do to stop it. Right now he's in very rough shape. His morphine dosage was recently increased, and it took 3 of those increased doses this morning to bring his respirations down to where he was comfortable. We've stopped his feedings and he's had 4 breathing treatments, lots of medicine and has slept in our arms all day. He appears more comfortable, which is good, but his breathing is weak, his chest is rattly and we just hope he can fight through this.





36 comments:

  1. Sending thoughts & prayers

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  2. praying with you all.

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  3. Please feel my hug around you , my friend and know that you are all in my prayers.

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  4. So unbelievably sad and just not fair for you all to go through this, shouldn't happen to anyone, let alone a child. Blessings to you for as much peace that you can find in your hearts knowing you have done and are doing everything you can for your little boy.

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    1. Perfectly said. Sending love and prayers ♥

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  5. He should be at home with you and Chris where he feels secure and loved. Praying with all my might.

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  6. Sending prayers of peace for Ollie and all of you.

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  7. Though not much seems to be the way it should be for little Oliver, at least he's right where he needs to be; in your arms. Sometimes the right thing is so very hard. Sending lots of love your way. Hugs to Oliver.

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  8. Lots of love and prayers to you all. What a beautiful family.

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  9. My thoughts and prayers go out to you all. I wish for all of you absolute peace, love, comfort and compassion. You are perfect strangers to me yet I know you well as a fellow human being. <3

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  10. Sending you so many prayers and hugs for you and your sweet Ollie.

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  11. I said a prayer for him tonight that he will sleep peacefully and that mommy and daddy will get some sleep as well. Blessings. Jen

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  12. Sending lots of love and prayers for Ollie's comfort and to both of you to continue to have the strength and love you have always had since starting this journey. xo

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  13. you are all in my thoughts and prayers

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  14. Awww. He looks peaceful hone is where the heart is. Bless all of you.

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  15. Oliver has the best parents in the world and he feels your love for him every second. My heart is with you all and may our Lord continue to watch over each of you.

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  16. I am so sorry to hear this news. Praying for you as parents, and for Oliver. God is with you always, please believe that

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  17. May God's Grace cover you all. Hope you can feel our love and support. We're so proud of your strength as parents! Love and comfort to Oliver.

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  18. Prayers and positive vibrations being sent from North Salem NY. I hope Ollie finds blissful comfort and you guys find peace. Your story has touched so many. May you feel the love and support in return. God bless.

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  19. Blessings to both of you and your beautiful little boy!

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  20. We've not formally met. You teach in my children's school. Tonight, as I read your post, I was feeding my own baby to sleep, and a little irritated that he fussed awake and wouldn't go to sleep right away, needing to be rocked. As I read your post, he put a chubby arm around my neck, and sighed into sleep. I spent 20 more minutes simply cuddling him, inhaling him to memory, and letting a few tears go. Thank you for resetting my perspective tonight, and for sharing your son with so many.

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  21. You are both incredible parents. I am amazed at your strength, love and willingness to share your lives. You are in my prayers and have been for many, many months. I pray that you and Oliver feel the peace and love that surrounds all of you always and that you are lifted by all those prayers from the people you have touched with your lives.

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  22. You have made a warm, caring and loving decision. In his home where he would want to be. Comfort and peace as you curl your arms around this gift ... You boy Oliver

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  23. God Bless u all,sending my love and prayers to u all!!!!!

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  24. I follow your journey and truly commend you and Chris for the difficult decisions you are faced with daily. Somehow you both find it in your heart's to be selfless, and make difficult decisions that most would never need to make in five lifetimes. Although, Oliver in his short little life has faced more than any baby should have to endure he truly didn't face it alone. He may not have been given "it all" but God sure did give him the best mommy & daddy XOXO

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  25. What a beautiful boy. I can't imagine the pain you are all going through. I hold you all in my prayers. May God bless you.

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  26. You are all in our hearts and thoughts tonight.

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  27. God bless you. How lucky Ollie is to have parents like you. Your strength is amazing. I am praying for your family every day.

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  28. It's almost 3 am and I'm up thinking of Ollie and his wonderful parents. May god bless you all. I pray Ollie is comfortable and he can get through this. I've grown to love him through your sharing. It's been a sad day for me thinking of him and the decisions you are being faced with.
    I continue to pray
    God Bless
    Susan

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  29. As always, I'm keeping you all in my prayers.

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  30. We are praying for all of you. Ollie is such a strong little boy, and it is obvious where he gets it from. Know that he finds comfort being at home surrounded by Mommy and Daddy and feels the love.

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  31. God is holding you all so tightly.

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  32. I'm thinking of you, and praying for you. You are surrounded by love.

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  33. You've all been in our daily prayers~ God, in His infinite wisdom, blessed you with this precious little life. He couldn't have made a wiser choice.

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