cindy0519 Posted May 9, 2006 Share Posted May 9, 2006 My Dad has surgery on his lower bowel to remove 2 tumors that were blocking the bowel, two weeks ago today. My sister, who by the way is an RN, was "the person" to travel to AZ this time since I had just spent three weeks there and had an audit going that I needed to meet with thd auditors and the client about. We (nurse sis and I) had a discussion prior to her leaving about the fact that I want ALLof the facts of what was going on and not just her "professional opinions" or what she felt was "best for me to know". She agreed and I was relieved at the thought that she would be there, I would be able to get first hand information on what was going on and Dad would have someone to really advocate for him there. I think I was wrong! Nurse sis ensured myself and our younger sis that dad's surgery was just going to be laproscopic "no big deal", "no need to come and just sit like we (she and SM) are". There was a brief mention after surgery during a conversation about a pressure bandage --which upon catching herself referring to it, nurse sis blew off quite rapidly by changing the subject. Then over that weekend after complications due to blood levels etc... she informs me quite casually that they have removed the "bandage" and Dad has 27 staples and 45 stitches in an 8 inch incision!!!!! Dad has since been released from the hospital with this incision "oozing" liquid due to ascites. The surgeon apprarently spoke breifly of inserting a tube to drain this fluid but it never occured prior to his release. He left the hospital with not a lot of questions asked or answered... back to the go with the doctors say and "don't rock the boat" theory, which is very hard for me to ward off from Ohio by phone. He was supposed to call his oncologist for an appointment ASAP upon being discharged (last Tues) and as of today he has still not called the onocologist. He is weak and feeling pretty darn defeated (depressed even I would guess) and says that he isn't sure he can return to chemo (even though the surgeon told him a healthy dose of chemo is the only thing that is going to prevent him from needing another surgery on the bowel). He is not eating much of anything (still) and is not taking in as much fluid as he should be to stay properly hydrated. He was sent home with 4 inhalers (due to fluid in his lungs which the nurse assured me was normal following surgery) but SM says he refuses to use more than one of them once a day. Ok...here comes the guilt! I have been the one who has "taken charge" of his medical care and done what is necessary to ensure that he is getting good information and treatment. In some ways I feel like I totally dropped the ball by not going out for the surgery (was work really more important -even if this was just a minor thing???)while in other ways I feel that I have decieved by nurse sis and lead to believe that this was "no big deal" specifically so I wouldn't hop on a plane. I am left feeling like I NEED to be there for here on out to ensure that things are done, issues resolved and quesitions asked. He has now has fluid leaking from an adominal incission for 2 weeks and nobody stepping up to the plate to take care of it, or anything else for that matter!!! Not to mention...blood related issues, no appetite, weight loss, tons of gas, balloning feet and ankles...the list goes on and on. He is supposed to have the staples removed from the incision tomorrow, but I wonder how it can possibly be healed when it is moist all the time. SM says she is using cut up sanitary napkins on it twice a day because there is so much fluid coming out of it. And there is no way he has the strength to walk from the car to the surgeons office...URGGG!!!! My gut is telling me to "Go to Az and GO NOW", get him into the appropriate doctors and make heads spin if necessary to ensure that he is taken care of and comfortable. After talking to him last night though I think he has just totally given up and I don't know what I "should" do if that is the case?!?!?! I truly feel like if I had been there this would not have been an issue as lines of communication would have remained open and I would have gotten answers to the questions that seem to be looming..still answered and hopefully things wouldn't look so filled with doom!! What do I do? Do I go and "take the bull by the horns" so to speak (once again) or do I just sit here and quitely figure out how to let it all go, even though it is killing me to do so? One of my biggest fears is not being able or knowing when to say "when" ...are we there??? I'm so torn.. one minute I am booking a flight and the next wanting saying to hell with it all! Help!!! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 10, 2006 Share Posted May 10, 2006 Go. Quote Link to comment Share on other sites More sharing options...
KarenO Posted May 10, 2006 Share Posted May 10, 2006 Do what your heart tells you to do. It's such a personal decision - you need to do what you feel is right for you and what you can do. No regrets. Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 10, 2006 Share Posted May 10, 2006 If you read your post, it DOES seem that you are definitely leaning a certain way. You SO want to be there! Kasey Quote Link to comment Share on other sites More sharing options...
ma's kid Posted May 10, 2006 Share Posted May 10, 2006 Agree with *folow your heart* and also as Kacey pointed out...You really do want to be there. Personally, I would go and *see for myself* what the heck is going on. This is a very stressful time for all family members and the bottom line really is: that your dad receives the best possible care and is as comfortable as they can make him. Good luck and many prayers. Libby Quote Link to comment Share on other sites More sharing options...
missyk Posted May 10, 2006 Share Posted May 10, 2006 If your gut says "go"....go. There's a reason it's telling you that, or so I've always believed. Quote Link to comment Share on other sites More sharing options...
Wendy Posted May 10, 2006 Share Posted May 10, 2006 DO NOT feel guilty, your sis gave you the impression that your dad was doing well. It is obvious from your post that you have been a great advocate for your dad and that you love him dearly. Hop on the next plane and give your dad a kiss!! I have my fingers crossed that your dad will start feeling better soon. Wendy Quote Link to comment Share on other sites More sharing options...
Linda661 Posted May 10, 2006 Share Posted May 10, 2006 Cindy: You have nothing to be guilty for and you didn't "drop the ball" -- things were covered. That things sound like they went awry (i.e. need more attention than they seem to be getting from the people charged with handling it) isn't your fault. Listen to your instincts and go if you can. Linda Quote Link to comment Share on other sites More sharing options...
Treebywater Posted May 10, 2006 Share Posted May 10, 2006 If your gut says GO, then do it. You will be better able to assess what your Dad's wants and needs are from there, and... guts say things for a reason. This sounds like such a frustrating situation... But you haven't done anything wrong. Hang in there and keep us posted! Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted May 10, 2006 Author Share Posted May 10, 2006 Thank you everyone! I know in my heart that being there is without a doubt the right thing to do. I really wanted to go three weeks ago when this all started but thought that DH was right when he said " there are gonna be a lot of bumps in the road and you aren't gonna be able to fly out for each little bump, maybe it's best to sit this one out"..of course that was when we thought this was "no big deal". DH has and continues to be wonderful and is in many, many ways my source for strength and sanity in all of this! I thank God each day that he is part of my life! I have booked a ticket for Tuesday as I have a conference at the end of this week that I must attend and a few things I need to finalize both at work and at home prior to leaving. I am planning on staying a week however if I arrive and things are as bad as I am now anticipating they may be, I may plan to stay longer (or indefinately if necessary). The last thing I want is for things to be at a critical stage and to be stuck here, unable to reach Dad in time. After talking with them for the past two days, I'm certain that both both Dad and SM are exhausted (physically and emotionally) and really need some support and someone to "just take over for awhile." So off I go... The emotional rollecoaster of all of this is just plain OVERWHELMING sometimes. I have sat in my office most of the morning and cried (which is very unusual for me and a bit unnerving I must admit). I thought I was ready to face the reality that there would come a day when Dad would be ready to give up, I just NEVER expected it to be so soon! But after a good cry and getting a plane ticket booked I feel a tad better emotionally and once again ready "to take up the fight"!! Thanks again for all your kind words and support - they mean so much and are very much appreciated!! Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 10, 2006 Share Posted May 10, 2006 You are doing the right thing. Your Dad and SM will be very glad that you are there to lean on. Sorry I didn't see your posts until just now. Cindi o'h Quote Link to comment Share on other sites More sharing options...
thrashej Posted May 10, 2006 Share Posted May 10, 2006 It is nice in Arizona right now. Not too hot yet. You will get a good tan!! Kidding aside, I think you are doing the right thing. Ultimately, you have to do what you are comfortable with or you will never be able to live with yourself. Take care and our prayers are with you and your family. Quote Link to comment Share on other sites More sharing options...
Susan Posted May 10, 2006 Share Posted May 10, 2006 go with your heart- Quote Link to comment Share on other sites More sharing options...
adela Posted May 10, 2006 Share Posted May 10, 2006 You going will relieve you and Dad/SM. In these type of situations got to follow your gut Adela Quote Link to comment Share on other sites More sharing options...
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