Butterfly3

Butterfly I just want you to know that I am thinking about you. I know that things must be getting kind of hairy for you not to post for a while. How are you? Please remember to take care of you too. I know with teens and a sick husband it is tough... but in order for you to get through these trying times in one piece you have to give yourself some sort of mini break. If you need to talk email me it's in my profile. I'm a good listener...........Take care....thoughts and prayers..........

Hello Butterfly, Just checking on you it's been a while. You don't have to post much just let us know that you are okay . Please........

Lot's of thoughts and prayers coming your way.......

Butterfly  I too have been thinking of you.  Please just hang in there.  They don't mean what they say when their amonia get high.  Please try and explain that to your children.  Hopefully they will understand.  Its hard for young people to understand sometimes but I truely believe they forgive much faster then adults.  My husband never would utter a swear word in front of a women if his life depended on it.  A true southern Gentleman.  But when his amonia got high he cursed like a saylor.  So try and explain the disease to your children. My husband and I decided not to tell the kids at first and it was horrible.  My daughters would get so frustrated because they couldn't understand why we were not asking more questions.  We were but just were not telling them.  Believe me it does help if they understand.  I hope you are taking care of youself.  Remember your children need you also.  And you can't do for them if you are burnt out.  I will pray for your husband. 

JoAnn

Still thinking about you and lots and lots of prayers.....

Thank you to everyone for keeping me in your thoughts and prayers. You all have also been in mine. I think of you all every day, but just haven't been able to bring myself back here for awhile. For that I am sorry. My husbands swelling has been harder to control and his mental ability (confusion) seems to be getting worse. I have increased the lactulose. That has seemed to help a little. He had a hearing for Social Security April 10. They said it can take up to 90 days for the decision. He was also turned down for Medicaid due to an IRA that I have set up from my employers, which I think is wrong for them to use to base their decision. Our only hope now is that Social Security comes through soon and then he will be eligible for Medicare. As it stands now he is unable to see his doctor because of the insurance problem. Please continue to keep us in your prayers.

You all will be in mine.

Hello Butterfly,

Let me try this again. My power went out in the middle of my response.

I am sorry that your husband's health isn't doing better. I know how rough it is on you. We understand why you are not posting so much so don't even be concerned about that. I wish that I could be there for you and hold your hand or just hold you. Know that I am with you in thoughts and spirit. You may feel over-whelmed ,over-tired and alone. But you have a whole big family in cyberspace sending good thoughts and prayers your way. Hang in there Butterfly! We know it's hard but you can do it. You are tougher than you are feeling right now.

Is he on any antibiotics? If he has a infection the lactulose won't work. Remember they get infections easily. My husband had to remain on an antibiotic for months.

Tons of thoughts and prayers ............

Pink Grandma, Thank you so much for reminding me that I am not alone. That is exactly how I feel most of the time. I am so glad that you are all here. I only hope that I can be of help to others here. I don't think my husband has infection, but I am not sure. He hasn't had fever or anything. He has a doctor's appointment on May 15. She will be able to tell us then if his labs look worse.

Mailman, I am so glad that you are doing well. Thanks for your words of encouragement. I am trying to stay strong for my husband. He has no idea of how scared I really am. I try to keep a smile on my face and pretend everything is fine. I would never let him know how I really feel for fear of making him lose hope.

You both are in my thoughts and prayers also.

Exhaused,   So glad to hear your husband is doing better. Keeping both of you in thought and prayer.  I don't know whether I mentioned it but I have a new grandaughter named Ava Marie. Born on 4/14/08 If not for the transplant I might not have been here to see her. I am truly blessed. Delivered by the mailman.

Mailman  That is so great about your grand daughter.  WE have one named Ava Jay.  She just turned 3.  We have 11 total and to me there is nothing like it.  They are so fun.  OUr oldest is 9 and youngest is 5 months!  I think that will be it Christmas is crazy but so fun.  Could you tell me what it was like when you got your transplant.  By that I mean how sick were you when you got the liver and what was your meld.  Jerry's meld is 16.  He's takng Neomysin now and is doing so much better.  The only problem is is having at this time his his hernia won't stay in so we are constantly pushing it back.  That does scare me.  I'm so glad you are doing well and please keep us informed.  Its so nice to hear the success stories.

JoAnn

 Good Morning Butterfly,

Let me start out by saying that butterflies are my favorite,the have so much change that occur but the end result is Wordless. In our struggles is the strength to keep us strong. I know it has not been easy for you and your family, but rememer that your husband is suffering and unable to express hisself. Man can be stubborn sometimes, but I do not think doubt of your love for him has every cross his mind. I know that love conquer all and You have stood forth in all thats happen. Rememberr down time for you is important, because without YOU where would your family stand.Sometimes our jobs is overwhelming,but noone knows the rewards we store in heaven from our deeds on earth. Just be good to yourself Butterfly3 and know that we are here for you. Keep us posted and I send my prayers, in hope that all continue to be better and better for you.

Each and every day in every way, everything I do and say gets BETTER AND BETTER AND BETTER.

                                                                      ONE DAY @ A TIME

                                                                             MARKETA

                                                                                    

 

Butterfly: Thank you for your kind words. Delivered by the mailman.

Connie I did read your e-mail. He was wearing something around his middle but its to the point now he has to hold it in or it pops out. He has done away with the binder (or what ever your call it) because if he has it on he can't tell that it has popped out until it starts hurting. That really scares me because they say they can not do surgery. We left on Friday to go to the coast. This is the third time we have come to our retirement home. He's trying so hard to convince me he's OK but he is moving really slow. Also has to hold in the hernia all the time. I'm also concerned because his 14 day supply of Neomycin ended on Friday. He is already acting very weak and shaking some. That tells me high ammonia already. I try not to second guess but its hard. No vomiting yet and he is eating good. But very weak. We are 10 hrs from Vanderbilt. There is an ambulance and Fire Dept. on the island and we are 30 minutes from the hospital in Beaufort. Its just scary. His son was here for two days. I always feel better when there is someone with me. We did get him to the beach for about 10 minutes to take some pictures and him to spend time with his grandson. We are going to rest for a few days and see what happens. That you so much for the info. No I did not get your e-mail but I will check again.

Thanks Again
JoAnn

JoAnn, I will pray that Jerry stays well enough to enjoy your vacation together. My husband's swelling has finally gone down and the encephalopathy has cleared. I am praying that it lasts. He has lost about 15 pounds in fluid build up in the last three days.