update on my manchild

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 12/12/2007 8:27 PM (GMT -7)   
yeah   Will did good! Everything happened just like some of you said it would. We arrived 2 hrs. early went in and to our surprise his MD was on call so he actually was the attending during the endoscopy. Will's labs showed elevated alts/afts still is at a 7.9 meld so does not meet cryteria for tplantlst not sick enough. CT showed a small glow but have not ruled out cancer so we go back for another CT Jan.11 to look again, somthing Dr. F.wants to keep a close eye on! Endoscopy, went well Dr. said they had to double the dosage on the sedative but there was no signs of disease in his esophugus (oops)and his stomache had alot of mucus. so we go back next month. Dr. F gave me a name and # of a financial transplant coordinator.I called and this lady asked me several questions then after my answers she said we were to early to be thinking about transplant he's nowhere close to where he's a candidate. What does this all mean??? Why do I feel I'm constantly getting conflicting reactions Dr's telling me within the year he will need a transplant. How long can this go on? How sick does a person really have to be? My 6 yr old has been asking me questions she knows Will is sick but, not how bad . She faked being sick at school this afternoon so i would have to pick her up early? First thing she said was is Will feeling better? How do you tell an impressionable 6 yr old what's going on. Not to mention I have no clue what's going on myself! Hope all is well and that everyone has a VERRRRRRRYYYYYYYYY MERRRRRRRYYYYYYYYYY CHRISTMAS!!! 
TONI                                       

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/12/2007 9:25 PM (GMT -7)   
Hi Toni, I am glad that everything went well with the endoscopy. It is a really good sign that Will doesn't have varices yet. I think that means his liver is still filtering the blood pretty well. I will pray that Will's next CT scan shows no signs of cancer.
My husband's meld score is 10, and the doctor said when it reached 15 they would do a work up to get him on the transplant list. His meld score has remained 10 for over a year now, so I guess there is no way of knowing when a person will reach that stage. From things I have read here and other places the meld score can change all of a sudden. The doctor did say that meld scores fluctuate up and down. I have also read when it comes to actually getting a transplant the person's meld score is very high, some as high as the 30's. The person is very sick.
I wish I had some advice to give you when it comes to talking to your six year old. Just reassure her that everything will be ok. Ask God to give you the words.

Merry Christmas to you also, and take care. As always, you are in my prayers.
Butterflythree
 
There is always hope!


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 12/13/2007 4:06 AM (GMT -7)   
Toni

I was so happy to hear that Will's endoscopy went well and that things have not progressed. I know it was a relief to you and your son. My suggestion with your daughter is to be as honest as you can be for her age and present it in a non threatening/scary way. Children have a tendency to pick up our emotions and then imagine what that can mean. I am sure that you will make the best decisions for talking with her, you are a very caring mother.

Merry Christmas to you and family.

Lucy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/13/2007 6:29 AM (GMT -7)   
Good morning Toni, So glad you and your son got through his endoscope fine. It is also good that his meld score is so low. It means that he has plenty of time to take care of himself and get all his ducks in a row before the need for the transplant. I know the waiting is a very hard part of the process especially for the caregivers. You are ahead of the game. Most people don't start getting the education on it until the disease has progressed along further. It's good to know what you are up against early so that you can take defensive steps earlier.
Our oldest granddaughter was 5 1/2 when my husband died. She had a very close relationship with him. So she asked both him and me a lot questions about his being sick. We kept it simple but truethful for each question. When it came to the real hard question " Is papa going to die?" My answer was ...I hope not. That's why we are taking him to the doctors so much so that he won't. But just in case keep papa in your prayers. You know it was part of her prayers every night for at least the the year before he died was for Jesus to keep her funny papa safe. Her faith has helped her tremendously with her grief now that he is gone.
Hang in there Toni......and remember to concentrate on you sometimes. Caregivers tend to give their all to the patient, that they rarely take care of themselves. I know that for the last 2 years I actually lost myself and didn't even realize it. I am just starting to find myself now. Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Post Edited (Pink Grandma) : 12/13/2007 6:37:17 AM (GMT-7)


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 12/13/2007 6:49 AM (GMT -7)   
Thanks Butterfly3 and Lucy,Yes, I and Will are very pleased with the test results of course he said I told you mom, I feel fine and I'm not worried I have a reason to be here and I'm not done yet! So now I have to try and explain a little to Marilea, but am not sure she understood. Daddy of course is out of town during the week so everynight he calls her for bedtime stories and chats. Well, he told me first thing she talked about was she hopes Will doesn't die! When Will spent the night Tuesday she asked him what do you want for Christmas? His reply was do you Love me? She said why Yes! He said that's All I need! He in turn asked her what do you want for Christmas? Her reply was just for you to Love me back! So she tells her dad isn't that sweet! And I don't have to pay for it, besides she said I'm Broke! LOL!!! I tell ya she cracks me up some time! She's wise beyond her years and very in tuned with what's going on she's even decided to sell some of her old toy's to help Will get some money! Santa's going to bring her new ones anyway! I am Wishing all is Well and in Peace !Thank You again Thoughts and Prayers to All! Merry Christmas!
Huggs and Smooches,
Toni

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 12/13/2007 7:00 AM (GMT -7)   
Thanks, Pink Grandma, your so right! I have found myself under a pretty dark cloud lately! I'm not quite sure how to pick myself up I'm fisically and mentally exhuasted! I could just stay home and curl up in bed all day! Thank you! I guess I better get dressed and go to work now! Talk to you soon!
Huggs and Smooches!
Toni

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/13/2007 4:30 PM (GMT -7)   
Toni, I know what you mean. Sometimes it takes all I have just to get up and go. Luckily I have a job that keeps me getting out of bed. I just put on my fake smile and try to make it through another day. Most of the time I am smiling on the outside yet feel like I am dying inside. This feeling does subside at times. I am so greatful when it does.

Your kid's Christmas present story is really sweet. It brought tears to my eyes.

Pink Grandma, Thanks so much for every thing you do. Your words are always so encouraging.
Butterflythree
 
There is always hope!


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/13/2007 9:42 PM (GMT -7)   
Toni, I am glad for you and Will....what a christmas present that is. You are a great mother and all the right words will come to you for your daughter. It's amazing that our children and grandchildren are so in tune isn't it? We just don't give them enough credit I guess. They seem to know and understand so well when we are honest with them. Sometimes it helps to sit quietly with them and encourage them to ask questions. If we answer quietly, honestly, and simply they sdjust quite well. God Bless and happy holidays to you and your family.
Pink grandma, you always know the right things to say at the right time. You are wonderful. Happy Holidays!
 
Butterflythree, your kind heart is always open to others. God Bless and enjoy the holidays.
                                   Shelly
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 9:08 PM (GMT -7)
There are a total of 2,736,193 posts in 301,359 threads.
View Active Threads


Who's Online
This forum has 151449 registered members. Please welcome our newest member, iwanttocry.
236 Guest(s), 6 Registered Member(s) are currently online.  Details
ResilienceR, Mews2much, PDL17, Redwing57, Mister Mike, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer