phylsgirl Posted August 20, 2008 Share Posted August 20, 2008 I just got back in to town a couple of hours ago from visiting with my mom and family. I'll try not to be long-winded, but if I am, I'm sorry. This is an update from my previous post. http://lungevity.org/l_community/viewtopic.php?t=38285 I arrived back home a week ago Sunday to find my mother having very labored breathing. My grandmother told me she sat up all night with my mother and she was waiting for me to arrive. Needless to say there is nothing as disturbing as coming home and finding your mom in respiratory distress. I held my mom's hand while she struggled to breathe waiting for the ambulance. My mother knew I was there for she squeezed my hand and nodded her head when I asked her. That alone helped me Once we got to the hospital on Sunday a week ago, they put a breathing and feeding tubes in mom and of course an IV and admitted her to the PCU ward where she has been since a week ago Monday early AM hours. Originally I was going back home to see my mom's admission into hospice, but labored breathing demands immediate attention, not hospice. The ER doctor told us that her oxygen level was 85% which is too low, but once she was placed on oxygen it was back up to 100%. My grandmother and I was at the hospital every day from her admittance except one day Unfortunately I believe my family and I are truly taking the first steps towards an inevitability. The doctors did a (contrast)scan of my mom and basically the right lung is gone; tumour filled and the left lung has two tumours which are beginning to press on the bronchoi tube. Also it appears the tumour that was discovered on her liver during the June scan has either increased in size or a new one is growing. There was also "something"showing near her windpipe. With her immune system low and her weight low as well, infusion chemo is out of the question and the Tarceva she was on obviously did not work. When mom is awake she is conscious and very aware, like if she hears a sound she'll make a face like, "what was that?" But she does sleep alot A tracheotomy was done two days ago to make her more comfortable and also she would be able to 'mouth' her words. The doctors let me stay with her while they did a sonogram on her throat and diaphragm just before the procedure. She was awake and I introduced her to the nurses and doctors. The procedure was, in the doctors words "textbook" Mom indicates, when asked that she is not in any pain so that is a blessing, although she has an extremely high tolerance for pain. The doctors say they will remove the feeding tube in a few days and see if she can swallow liquids and then work their way up to I guess puree-like foods. Right now I am numb. My family and I shed tears this last week and half, but we know we have done and will continue to do what is best for mom and her care and comfort. I know I went home to meeting with and set my mom up with hospice, but this, including the latest scan, hit home harder. I am mad we never really got a chance to put up a fight. But at least now my mom can breathe, she is being fed and hydrated and comfortable. Should be heading back home the week of labor day, by then, God's willing, she should be able to drink liquid and I can assist with the feeding along with my brother and grandmother. Just want to ask for prayers for my mom and my family and as always for the support these boards bring. Hugs to all, Ree Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted August 20, 2008 Share Posted August 20, 2008 Ree, I am so sorry to hear this news. But it comes so clearly through your post just how loved your mom is. I know she feels it. No matter what happens, keep hold to the fact that she can feel the love. I couldn't tell from your post if your mom is on hospice care at this time. My husband was with hospice for 6 months. I just want you to know that our hospice was extremely helpful and diligent to solve any issues that we had. So, if this is the case for you, don't be shy about asking about anything. Chances are, they will amaze you with their ability to address any issues that you might have. You, your mom and your family have my prayers. Lynn Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 21, 2008 Share Posted August 21, 2008 (((((Ree))))) I am so sorry that your mom has taken this step backwards. Hopefully, she will be feeling better and be able to return home. You hang in there, girlfriend. We are here for you. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 21, 2008 Share Posted August 21, 2008 Tons of prayers for you, your mom and family Ree. What an awful time for you all. Am so glad you find support with this board. Hang in there, do the best you can and take care of yourself. Sandra Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 21, 2008 Share Posted August 21, 2008 (((Ree))), I just want you to know that I will keep you and your family in my thoughts and prayers. Sue Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted August 21, 2008 Share Posted August 21, 2008 Ree: You and your family continue to be in my thoughts. I am sorry about your mom's condition, but soundsas if you are all doing what you can. Take care. Affectionately, Carole Quote Link to comment Share on other sites More sharing options...
Marci Posted August 21, 2008 Share Posted August 21, 2008 Please know I am holding you and your mom in my prayers. Blessings, Marci Quote Link to comment Share on other sites More sharing options...
fillise Posted August 21, 2008 Share Posted August 21, 2008 Ree, I am keeping you and your mom in my prayers. I'm also sending you a hug to lift you up. ((((Ree)))) Love, Susan Quote Link to comment Share on other sites More sharing options...
phylsgirl Posted August 21, 2008 Author Share Posted August 21, 2008 Thank you all for the prayers and wishes for my mom and family. Lynn: re hospice- No, mom was not in hospice yet whenI arrived home on Sunday (8-10) . hospice was sending the nurse over on the next day,Monday to do an evaluation and for us to sign my mom up for hospice. But when I arrived home my mom's breathing being what it was we had to get her to the hospital asap. Sorry I wasn't clear on that. I just got off the phone with my grandmother she said my mom's breathing seemed more labored than it was two days ago. My mom was also moved from the pcu ward to a private room, right by the nurses stations They also moved the feeding tube from my mom's mouth to her nose so I don't know if the move to a new room, plus moving the feeding tube that has anything to do with how my mom is breathing or if this is just the way things are going now. My grandmother also told me, she told my mom if she wants to let go it's okay, we don't want to let her go, but we understand if she is tired and is ready for her next journey. Right now I am holding my own, I know my brother will probably fall apart when the time comes and I need to hold him up as best I can. I think my grandmother has made some peace with this. She is of very very strong faith. Like my mom told me when she was diagnosed "Whatever the outcome, we will all be okay." So I hold that near to me. I'll keep you posted and again, Thank you all for the prayers and thoughts. Hugs Ree Quote Link to comment Share on other sites More sharing options...
Don M Posted August 22, 2008 Share Posted August 22, 2008 Ree, you, your mom and the rest of your family have my prayers at this difficult time. Don M Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 22, 2008 Share Posted August 22, 2008 Another tag on sending you and your family as much positive energy as I can muster. You all sound as though you are doing whatever you can to make this time as comfortable for your mother as you can. And her mother sounds like an awesome lady. Her being there must make it just a little easier for you to go home. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted August 22, 2008 Share Posted August 22, 2008 I'm sorry to hear this news. You are all in my thoughts and prayers at this difficult time. Denise Quote Link to comment Share on other sites More sharing options...
phylsgirl Posted August 28, 2008 Author Share Posted August 28, 2008 Thank you Don, Judy, and Flyman36. Just an update... Mom's breathing did get better afterIit seems the position of her head may have had something to do with why she was having trouble breathing..From what my grandmother was telling me, the day my mom had trouble breathing (last Friday) it seems she was either leaning forward or something. I don't know, it hard sometimes to get news second hand and to really understand what's going on but whatever it was (personally , I think moving her from one ward to another may have had something to to with it) it seemed to have passed. On this Tuesday my grandmother said the doctor did say was that my mom is "fighting" the ventilator; she wants to try to breathe on her own. From what the doctor told me when I was there a week and a half ago, my mom breathes two breaths on her own and then the rest of her breaths areventilator assisted; this is a per minute set up. So I asked my grandmother why don't they try to let ma breathe more on her own per minute? I was told that since ma has only one lung that is functioning to any degree the doctors don't want to overtire it with my mom breathing on her own. Also I was told on this Tuesday we will be meeting with the doctors today(Thursday) to talk about resuscitate orders. My brother says he will call me on my cell phone so I can partake in the meeting, But just in case the doctors/hospital does not allow him to call me, we have already KNOW to resuscitate my mom if the time comes. A co-worker of mine, who went do a path similar to this with her dad a few years ago told me this is standard protocol to discuss this and have clear understanding of the family/patient's wishes before the need may arise so not to worry which I initially did. Well, I'll be heading back to my hometown and family again this weekend to stay for a week. Thank God for FMLA even if it is without pay. I'll be able to talk and question the new doctors for myself and get answers directly. But most important I can spend time with my mom. Again, thanks to everyone for their prayers and thoughts. When I leave this weekend to head home I will be without or with very limited internet access for the week I am visiting mom so I will update when I return. Love to all Ree Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 28, 2008 Share Posted August 28, 2008 Ree. My continued prayers for you, your mom and your family at this very difficult time. I wish you strength. Your love for your mom comes shining through and I am glad you are getting to go and see her again. Take good care Sandra Quote Link to comment Share on other sites More sharing options...
fillise Posted August 28, 2008 Share Posted August 28, 2008 Ree, I will be thinking about you during the coming week. Your mom is in my prayers. Susan Quote Link to comment Share on other sites More sharing options...
Ashaki Posted August 29, 2008 Share Posted August 29, 2008 Prayers to you and your mom though this difficult time. Ashaki Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted August 29, 2008 Share Posted August 29, 2008 Ree, I am praying for you and your mom. Lynn Quote Link to comment Share on other sites More sharing options...
Don M Posted August 29, 2008 Share Posted August 29, 2008 Ree, you and your mom have my prayers. Don M Quote Link to comment Share on other sites More sharing options...
sharyn Posted August 31, 2008 Share Posted August 31, 2008 Ree, Just know I am thinking of you... many prayers coming your way... Sharon Quote Link to comment Share on other sites More sharing options...
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