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copteacher
Adjunct
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Joined: 08 Jun 2002
Posts: 20588
Location: Teaching in the Halls of Justice
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 Posted: 10/25/04 - 18:39 Post subject: Latest with Abby-meeting with all docs tomorrow-alittle long
Abby is stable but no better than when we brought her into the hospital on Friday
She had a scope of her belly to see if her bleeding/pain was anything other than IBD (inflammatory bowel disease). What was found was that the level of her pain was consistent with the amount of inflamation in her belly, which is extreme.
So she is still on IV narcotics around the clock to manage the pain until the belly settles down.
Tomorrow Abby gets the maximum amount of Remicade she can possibly have. If that fails then the docs are flat out of medical options for Abby. They were leary to put her on that high of a dose due to the toxicity in the past. We shall see.
Tomorrow at 1100 our new pediatrician from CHOP got all of the powers to be of Abby's medical team to agree to meet tomorrow to lay it all out for us.
On the agenda:
What is next as far as treatment.
Pain management
End of Life issues and contigency plans should they arise.
What it looks like is that Abby is going to have her large intestine completely removed. This is an extreme measure but it could be the be all end all treatment. Since this is the cause of all of her problems, removing the main problem could actually cure her.
This comes with a great risk as it may not be the problem but the only way to know for sure is to remove and do pathology tests to know for sure.
There is a lot on our plate tomorrow. We even asked our pastor to come to the meeting with us, just in case.
A guy I work with is sitting with Abby so I can go to the meeting tomorrow and then take Robin to another doctor's appointment later in the day.
So I ask you to really offer up some good prayers for the members of the medical team to have good discernment and that Robin and I have clear minds to make some possibly tough decisions.
In the next week or two some heavy decisions and things to consider. Ultimately, decisions regarding the rest of Abby's life will be made in the next couple of weeks. We have wise docs who spend a great deal of time in dealing just with Abby but they only give best guesses and options. We have to make the decisions.
This has been rough, being away not only from my work so much but my time with JJ and Hannah being so limited also. I try to spend as much time as possible with them but I am being pulled in so many directions.
If you ask how I am doing. In a word. Tired. Robin and I are both tired. We have only spent 6 nights together in the last 6 weeks. We barely see each other except for times we are at the hospital "switching" shifts. Robin and I share a common belief system regarding Abby. We have given Abby over to God and do not make any decisions unless we both have peace with God over the decisions.
We have had some long talks over issues I hope none of you ever have to decide regarding your kids. Just give your kids a hug and a kiss tonight for me. That is all I ask.
Thanks everyone for your great support. It helps tremendously.
Joe.
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Dancer
Member
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Joined: 21 Nov 2002
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Posted: 10/25/04 - 18:48 Post subject:
Definately will say a special prayer for Abby and the rest of the Oaster family. Such a difficult time. 
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Ms. Jenn
Fresh, Hot & Wild
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Joined: 14 Feb 2004
Posts: 7935
Location: Suite 550
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Posted: 10/25/04 - 19:12 Post subject:
Thank you for keeping us updated.
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rolling rock
The Pinball
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Joined: 15 May 2002
Posts: 16218
Location: unknown zone
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Posted: 10/25/04 - 19:23 Post subject:
prayers for your family and for Abby and her doctors, joe.
thanks for the update.
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JACKED UP
PRESIDENT
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Joined: 06 Jun 2003
Posts: 21238
Location: www.johnnydu.com
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Posted: 10/25/04 - 19:40 Post subject:
Will keep you, Abby and the rest of the family in my thoughts and prayers. Thanks for taking the time to share and update us.
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Cappy
Excelent
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Joined: 16 May 2002
Posts: 27368
Location: Spreadsheetylvania
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Posted: 10/25/04 - 19:41 Post subject:
Hope you get some answers
Will be thinking about you guys
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Floridaboiler
POTFH
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Joined: 18 May 2002
Posts: 11322
Location: Jacksonville, Florida
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Posted: 10/25/04 - 20:52 Post subject:
Holy Sh!t!!
Good Luck and stay strong!
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cherylpf
crazy cat lady
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Joined: 14 May 2002
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Posted: 10/25/04 - 21:00 Post subject: Re: Latest with Abby-meeting with all docs tomorrow-alittle
| rtpd113 wrote: | What it looks like is that Abby is going to have her large intestine completely removed. This is an extreme measure but it could be the be all end all treatment. Since this is the cause of all of her problems, removing the main problem could actually cure her.
This comes with a great risk as it may not be the problem but the only way to know for sure is to remove and do pathology tests to know for sure.
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Joe, I have a good friend who is my age who suffers from a very severe case of ulcerative colitis and has been in and out of the hospital since I've known her. She too is facing having her entire large intestine removed (I think having a portion of the colon removed is a not so unheard of solution to pretty bad colitis, but hers is the worst they've seen, and throughout the length). Her doctors are optimistic that while it will be a pretty big life change, it will end many of the hospitalizations and pain she has endured. My friend was the first time I had heard of this procedure. I don't know if it is the even close to the same process for a kid as little as Abby, but the optimism of my 25 year old long tortured friend and her doctors gives me hope this could be a viable option for little Abby. I'll ask my friend and do some searching on the web and let you know if I find anything.
Continued prayers for Abby and family, thanks for the update.
Last edited by cherylpf on 10/25/04 - 21:12; edited 1 time in total
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sonnylax
Member
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Joined: 30 Sep 2003
Posts: 2942
Location: Living in a lollipop and unicorn world
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Posted: 10/25/04 - 21:09 Post subject:
| rolling rock wrote: | prayers for your family and for Abby and her doctors, joe.
thanks for the update. |
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genie
Master of Prissface
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Joined: 14 May 2002
Posts: 16194
Location: Finding serenity one day at a time
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Posted: 10/25/04 - 21:30 Post subject:
You guys are always in my thoughts, more so lately than usual.....and I know that regardless of what decisions you end up making, they will be the right ones, guided by your faith, your partnership with each other and your instincts. Know that there are a lot of people out here praying for you and with you and who will be here to support you and your family no matter what the outcome is.
Hang in there and stay strong buddy, you guys are not alone.....
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crazyfrog
Kermitologist
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Joined: 31 May 2003
Posts: 7610
Location: atlanta
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Posted: 10/25/04 - 21:36 Post subject:
love you guys, stay strong.
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shelflifers
Member
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Joined: 10 Jun 2002
Posts: 18633
Location: Austin, TX
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Posted: 10/25/04 - 21:39 Post subject:
Boy, it only seems right that this would be the answer. Joe, I appreciate the updates and wish we all could do more than just pray but it's gonna have to do, buddy!
God bless your family,
joel
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jrjo
Gone Fishin
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Joined: 15 May 2002
Posts: 16451
Location: Lake Wobegon, MN
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Posted: 10/25/04 - 23:26 Post subject:
God's peace Joe.
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Sahara
Member
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Posted: 10/25/04 - 23:33 Post subject:
May you continue have strength and wisdom along with the faith you have have shared with all of us here.
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gretriever
Hipster Doofus
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Joined: 16 Jul 2003
Posts: 19385
Location: A moving target in a firing range.
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Posted: 10/26/04 - 07:38 Post subject:
May peace and courage, constantly shown time and again by you all, continue to be with all the Oasters.
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