funschooler5 Posted February 16, 2013 Share Posted February 16, 2013 (Please don't quote me as I may delete this later). I posted awhile back about DH being in the hospital. He now has end-stage liver disease and needs a transplant but is not on the list (they are working on getting him on there). He's been hospitalized 3 times since the beginning of the year. He's getting steadily worse. In between hospitalization I'm caring for him at home. He was using a walker at home to get to and from the bathroom, but that's all he can do. Right now he's in a larger hospital an hour away from our home. He's too weak to get out of bed at all. I've stayed every night with him in the hospital, while my parents have watched the kids. My mom was staying at s hotrl nearby with DD15 so they could bring me our 10mth old so I can nurse her because she won't take a bottle. They drove back home yesterday and I pumped a little milk but not much and they have formula for her they'll probably have to try, which really hurts as I nursed all of my kids exclusively and I just like having that closeness with her, especially now with all that's going on. I'm exhausted. I want them to come back here not only do I can nurse my baby and see my other kids, but for moral support. DH's mom works so she's only here a few nights a week. These are all petty annoyances I know, because we're dealing with the very real possibility that he won't get a transplant. I don't know how much time he'd have if he doesn't; I'm scared to ask. I'm also scared to take him back home when they release him. I don't know if I can take care of him again. It was so hard caring for him last time he came home, not only physically, but emotionally too, as he has bouts of confusion due to hepatic encephalopathy. We've had so many ups and downs since January...two 911 calls, one of which landed him in the ICU, intubated, in septic shock. Then he got better, but his belly fluid got worse. Then his legs. Then his breathing. They fix one thing and another thing gets worse. I just don't know what to do. People keep asking how I'm doing all this with a baby, and I don't know. I'm not doing it well. I feel like I'm going to die of stress and emotional exhaustion. If you read this far, thanks for listening. I feel a bit better getting that off my chest. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
jrn Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest inoubliable Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: No words, just hugs. Quote Link to comment Share on other sites More sharing options...
Dana Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
MrsBasil Posted February 16, 2013 Share Posted February 16, 2013 So sorry. (((Hugs))) Quote Link to comment Share on other sites More sharing options...
sparrow Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: :grouphug: My goodness. Feel free to get things off your chest whenever you need to. I'm very sorry you're having to deal with this. Quote Link to comment Share on other sites More sharing options...
KayT Posted February 16, 2013 Share Posted February 16, 2013 I am so sorry. I wish I could give you a million :grouphug: right now. Quote Link to comment Share on other sites More sharing options...
Mandylubug Posted February 16, 2013 Share Posted February 16, 2013 I am so sorry! Y'all are in our prayers! Quote Link to comment Share on other sites More sharing options...
********* Posted February 16, 2013 Share Posted February 16, 2013 Oh my gracious! I don't even know what to say. :grouphug: Please take any and all offers of help from people IRL, and start asking for help if no one is offering. You can't and shouldn't do this alone. :grouphug: Quote Link to comment Share on other sites More sharing options...
elegantlion Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
mommaduck Posted February 16, 2013 Share Posted February 16, 2013 So many hugs and prayers for you, mama. I'm so sorry your family is going through this :( Quote Link to comment Share on other sites More sharing options...
Dandelion Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
GailV Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: I wish there were more I could give you than cyberhugs and prayers. Quote Link to comment Share on other sites More sharing options...
lllll Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Alenee Posted February 16, 2013 Share Posted February 16, 2013 Praying for you. I'm so sorry you have to go through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted February 16, 2013 Share Posted February 16, 2013 I'm so sorry you are dealing with so much. I hope you are able to care for yourself at some level. My prayers are coming your way! Elise in NC Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted February 16, 2013 Share Posted February 16, 2013 I am so sorry you all are going through this. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted February 16, 2013 Share Posted February 16, 2013 Prayers and hugs! I am so sorry you are going through this! Quote Link to comment Share on other sites More sharing options...
Faithr Posted February 16, 2013 Share Posted February 16, 2013 Praying for you! It sounds so hard Do you have anyone to counsel you? Is there a social worker at the hospital? I have never been in your shoes but my dh has been through some minor stuff ( heart attack, suregry). Try to focus on little things that will help in the midst of anxiety and numbing worry, like drink lots of water! That will help with milk supply and stress. Even if you do have to go to formula you can still nurse part of the time. It doesn't have to be all or nothing. Nursing is soothing so it will be good for both you and you baby. If you can't take care of the baby and the kids and your dh, can you get a caregiver to come in to help with him? I would really talk with the social worker. We have had very good experiences with them when dealing with sick parents, relatives, etc. Anyway this is my meager offering. Hang in there. Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Anne Posted February 16, 2013 Share Posted February 16, 2013 I am so sorry to hear this - please, please ask people IRL for help - wish I was there to help you!! I will pray for your dh, and for you ~ :grouphug: :grouphug: :grouphug: Anne Quote Link to comment Share on other sites More sharing options...
GinaPagnato Posted February 16, 2013 Share Posted February 16, 2013 I am SO sorry for all the difficulties and heartache you're experiencing. You are carrying a heavy, heavy load, and I pray you have someone IRL who can help you bear it. I will pray for you and your family. Quote Link to comment Share on other sites More sharing options...
redsquirrel Posted February 16, 2013 Share Posted February 16, 2013 I am so sorry. I know this might be a fairly minor concern, but it is possible the hospital would let you talk to the lactation consultant? I know of a similar situation here, and the LC quietly gave the mom access to a hospital pump. It allowed her to keep her milk flowing. Quote Link to comment Share on other sites More sharing options...
TranquilMind Posted February 16, 2013 Share Posted February 16, 2013 I am so, so sorry. Is there anyway you can pester them about the transplant list. This is a man with a baby, for goodness sakes! My sister had 4 kidney transplants. I know kidneys are easier to find, however. Praying it all works out. Quote Link to comment Share on other sites More sharing options...
Patches Posted February 16, 2013 Share Posted February 16, 2013 I'm so so sorry. Praying for you. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted February 16, 2013 Share Posted February 16, 2013 Praying for you and your family. Please do talk to the social worker about your his care after he is discharged. You will need to voice your concern that you cannot care for him if he is not ambulatory - that you will need help. They may be able to arrange home care assistance. Also, if you have a church community, reach out and ask for help. People may be able to help with meals, driving, errands, etc. Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted February 16, 2013 Share Posted February 16, 2013 so sorry. praying for wisdom and strength Quote Link to comment Share on other sites More sharing options...
Anne in CA Posted February 16, 2013 Share Posted February 16, 2013 Praying. Quote Link to comment Share on other sites More sharing options...
Freckles Posted February 16, 2013 Share Posted February 16, 2013 I'm so sorry . I will be praying for you and your family. Quote Link to comment Share on other sites More sharing options...
Wildcat Posted February 16, 2013 Share Posted February 16, 2013 I'm so, so sorry. :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
brehon Posted February 16, 2013 Share Posted February 16, 2013 (((( )))). I'm very sorry you're dealing with this. How very stressful! Please do talk w/both the doctors & nurses and the hospital social worker. This is their job. I'm sure you've been told that erratic behaviour and confusion are very common in liver patients. Please consider this when deciding about bringing your dh home, especially with small child(ren) in the house. Thoughts and prayers for you and yours during this most difficult time. Quote Link to comment Share on other sites More sharing options...
ChrisB Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: I like the suggestion of asking the LC for access to a pump. My heart really goes out to you and your family. Tough, tough situation. Quote Link to comment Share on other sites More sharing options...
celticmom Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
jillian Posted February 16, 2013 Share Posted February 16, 2013 I am so sorry Quote Link to comment Share on other sites More sharing options...
Joanne Posted February 16, 2013 Share Posted February 16, 2013 You know I understand. My DH is headed to the hospital again probably in the next 48. He goes so often that I don't post about it anymore, email his sons or post on FB. PM me anytime. I would be willing to exchange phone numbers. This disease comes with stigma that makes everything even more challenging. Quote Link to comment Share on other sites More sharing options...
Clarkd Posted February 16, 2013 Share Posted February 16, 2013 Sending healing, peaceful thoughts your way. Quote Link to comment Share on other sites More sharing options...
Soror Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
tearose Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: I'm so sorry that you and your family are going through this. Quote Link to comment Share on other sites More sharing options...
Lara in Colo Posted February 16, 2013 Share Posted February 16, 2013 I am sorry you are going through this. My heart aches for you. Just know that we are here for support. Quote Link to comment Share on other sites More sharing options...
pdalley Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: I'm so sorry Quote Link to comment Share on other sites More sharing options...
violamama Posted February 16, 2013 Share Posted February 16, 2013 I'm so sorry. I wish I knew you irl so I could help. Could you find a friend/relative to organize help for you? Meals, errands, light housekeeping? Quote Link to comment Share on other sites More sharing options...
TheApprentice Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
MooCow Posted February 16, 2013 Share Posted February 16, 2013 Praying for you! It sounds so hard Do you have anyone to counsel you? Is there a social worker at the hospital? I have never been in your shoes but my dh has been through some minor stuff ( heart attack, suregry). Try to focus on little things that will help in the midst of anxiety and numbing worry, like drink lots of water! That will help with milk supply and stress. Even if you do have to go to formula you can still nurse part of the time. It doesn't have to be all or nothing. Nursing is soothing so it will be good for both you and you baby. If you can't take care of the baby and the kids and your dh, can you get a caregiver to come in to help with him? I would really talk with the social worker. We have had very good experiences with them when dealing with sick parents, relatives, etc. Anyway this is my meager offering. Hang in there. :iagree: Yes. Please talk to the hospital's social worker. They are there to help, and I can't tell you how many times I've had to seek their support and help with my mother. :grouphug: Quote Link to comment Share on other sites More sharing options...
happypamama Posted February 16, 2013 Share Posted February 16, 2013 I'm so sorry. Big :grouphug: :grouphug: :grouphug: . Quote Link to comment Share on other sites More sharing options...
Saddlemomma Posted February 16, 2013 Share Posted February 16, 2013 :grouphug: prayers sent and more :grouphug: Have you explored the possibility of one of the family members (DH's father, mother, siblings) being a donor for him? The liver regenerates, so he would only need a portion of a donor's liver. You may be able to bypass "the list" this way. Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted February 16, 2013 Share Posted February 16, 2013 Praying for strength for you and that help will come for both you and your dh--practical help for you and medical help for your dh to have the best possible outcome. Quote Link to comment Share on other sites More sharing options...
Eagle Posted February 16, 2013 Share Posted February 16, 2013 **hugs** I am so sorry you are going through so much. My thoughts are with you. Quote Link to comment Share on other sites More sharing options...
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