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I've got an 18 week old nephew who's never left the hospital. He's done much better than the earthly doctors ever thought - avoiding all but one surgery they swore he'd need and surviving longer than they said. They can't tell us what's wrong with him, but keep trying to get my brother to pull the plug. Pray not only for Aaron's little body, but for my brother's finances. The hospital bills are amazing!
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Aaron's HOME!!! The doctors require hospice nurse visits and 24-hour care by my brother or sister-in-law. My brother's taking a leave from work since my sisters-in-law has better insurance at her job. Aaron's on a heart moniter, oxygen, etc and has to be fed HOURLY. They say he cried all the way home reacting to the different enviroment, but has settled in okay. However, during the first few hours, my sister-in-law started the stove, got busy with the baby..... Everyone's okay, but it took two fire extingushers to put out the kitchen cabinets!!! They are so exhusted from all the hospital time, working to pay the medical bills, tending to their older son (age almost eight) and just regular life (washing, cooking, cleaning). Continue to pray for Aaron, the finances AND for them the strength and peace only God can give. Thanks guys, you've encourged me!!
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Mom spoke to my brother today (they're in Baton Rouge). The Doctors still think Aaron's not gonna make it and hospice is the only way, but my bro and sis-in-law refuse to accept man's report of death. Even when overwealmed by all the stress, they have held fast to God's Promise of Life!!

Yesterday, the hospice respirator therapist visited. Although not currently liscened, my brother was once an EMT. The two of them adjusted the oxygen machine settings. Today, my brother went to switch Aaron to the portable O2 to take him outside for a bit. He found that somehow the OXYGEN HAD NOT BEEN TURNED ON!! That's right--Aaron was breathing okay on his own!

Plus, Marcus said he LOVED it outside. He said Aaron looked all around, soaking in the sound of the breeze in the trees and smiling!! Remember, Aaron has spent almost all of his life on his back due to the life saving machines and wires.

He's been taken off two of the medicines and is being weened off the narcotic! Please praise God for His work so far!! Someday I'll tell you the whole story of this child born dead in the middle of a Hurricane!!
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Bits of Praise
My brother says Aaron rolled over by himself!!! He also says Aaron cries over dirty diapers and fusses when there is too much commotion in the room. Remember, the doctors say Aaron's a deaf, blind vegetable!!

They wanted some bonding time with the baby before letting us visit again. I can't wait!!!
And my brother is picking up weekend work when my sis-in-law's with the kids. It's simple yardwork and handyman stuff, but it helps (especially since he had to take a leave from his job).
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My brother says Aaron's doing well. He still hates too much noise in his room, I guess he's just used to the hospital setting. However, Aaron does suffer from narcotics withdrawal. They are trying to slowly drop the doseage, but my brother says Aaron sometimes develops the shakes and cries. My heart is breaking to know he's in pain, please continue to pray for Aaron and the family.

Sad, I hope things turn for the better.

Will do.

Definitely praying.

BikerGirl said:

Quote:

The hospital bills are amazing!

I can imagine.

And......"amazing" is not the word.

Hope the little guy surprises everyone.

_________________
"The 'farce' is strong with Sith Lord Obama-Wan." words of Scourge.

"Uh....You can believe me....Uh....because I never lie, and....Uh....Uh....I am always right." words of Sith Lord Obama-Wan.

Daddy likes it all, the DraíodóirDé likes it all

Your update is great news.


Satisfaction.......yeah.


I'll keep them all in prayer.

Will keep praying.

Good to hear he's home. Still praying.

I can't imagine the stress that they must be under. And to that a fire in the kitchen.....wow.

Still praying, thanks for the update.

WE've got a somewhat similar story in our background, though this thread is not the place to tell it......I understand the stress and hospital bills all to well.


Children, thru God's grace and mercy, are AMAZINGLY resilient little creatures. Medical science undergoes breakthrus every single day. NEVER give up hope, and pray , pray, pray!


BTW....any Dr. that is truly worth his salt would be looking for answers, not telling people to pull the plug, ESPECIALLY when Aaron keeps on keeping on. Search out secondary opinions, Look into children's hospitals....research hospitals......teaching hospitals that have an affiliation with a University.....these are the places where the research takes place and the advances are made....sometimes a "local" hospital with "local" doctors just isn't equipped or doesn't have the 'know how' to get the job done......

I second what exo said and send big (((HUGS))) from a parent who has been there to the parents that are traveling this difficult road!

Thanks for the update, still praying.

To save money, my brother usually calls our Mom and then she relates everything to my sister and I. But for my birthday, I got to talk to him myself. He was in a peaceful mood but understandably very tired. He said Aaron is getting stronger everyday. When I told him I was posting here and you guys were praying, he said Thanks. He then added, tell them to pray about the finances!

If you haven't read the edits to my first post at the top of the page, please do and continue to pray!!!

Will do.

Me to!

What a tough road. Still praying.

Today my brother said Aaron's turning over by himself. Of course he does this as they are trying to change his diaper!! (memories for all the parents out there, huh?)

When they wake Aaron up, he swings his fist first before even opening his eyes. My sister did this into her teens so he's got some Aunt T in him.

On the weekends, my brother has been trying to make up the lost of his regular paycheck by doing landscaping yardwork. He's picked up enough jobs by word of mouth that today he said he brought home more last week than his job!! Only God can do that!

That's good news. I pray for strength for them as they work through this situation.