Don’t even know where to begin
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Dearest Ashley, my heart just breaks for you and your brave little Mom! At least with Hospice Mom will be made comfortable and that is the bottom line. That Hospital should have it’s license revoked. But first thing first. And the first thing is to get the heck out of Dodge! Your ONC will call Hospice and have it all set up for when you get home. This Hospital should be on a list of NOT TO USE Hospitals as we also have another new member going through the same paces there. In the meantime give Mom her Peace and just make some new memories that will last for eternity. Prayers are going out for you and your family. Be strong! P.S. It still may not be too late for another opinion from a reputable Doctor.
Well, mom has been in the hospital for a month and half now. To say the least I am floored in what our health”care” has become. Our doctors have agreed that they dont know what they are doing. They are not on the same page. Today, we had a scheduled appointment with BOTH of them to sort everything out…so an hour past the appointment we are informed that they are not showing up. We also found out that after mom’s 75% liver resection, the surgeon left behind 2 tumors on her remaining bile duct. He apologized for “failing” to mention that. She now weighs 98 pounds and is starving to death, literally. They are giving her tube feedings of Jevity, but they just now realized that for the FIFTH time, her tube was not in the right spot. Therefore, she was vomitting all the jevity back up and receiving no nutrition. They have hooked her back up to the suction tube..the jevity goes in through the feeding tube and comes right back out with the suction tube, makes a lot of sense huh? My mother is the sweetest angel anyone could ever meet. Not ONCE has she complained about anything since being in the hospital. Today, when the doctor informed us that it was time to go home with hospice, that this was the end of the road she broke down and cried. She said “I have been fighting so hard, how come that its not enough.” Helplessness is beyond how I feel. She’s not ready to give up and throw in the towel. Her bilirubin levels are now a 30, ammonia and WBC’s are soaring. She has SEVERE abdominal pain and they can’t figure out what it is, nor do they care. In my opinion they look at her like she is a lost cause. I never thought one could feel so many emotions at once. She’s not a quitter but we just told her, that if Jesus or the angels come to see her and are ready that its okay to go home. Thank you all for your support and thoughts in this journey. Its been a long road to say the least and I’m ready for momma to smile and be happy again.
I found all of this information about the care your mom received is so disheartening. How can “caregivers” be so inhumane and thoughtless. They obviously have never had to rely on the goodness of others. Just following nursing practice guidelines should have assured a high level of care. It almost sounds like it was a “for profit” hospital where the fewest number of employees care for the greatest number of patients. Certainly the attitude there was poor. I hope you keep us informed about your progress on this.
Ashley
I agree with the others and unfortunately I found myself in a similar situation with my own mom, a differant desease but very similar hospital situation. Be strong and BE HER ADVOCATE! Make sure they know you are watching, keep a journal and make it visible, have everyone who is staying with your mom write everything in it. Keep track of meds, times even b/ps and temps everything. It makes the hospital take notice when they know you are writing things down so you will not have to really on memory. My moms doctors got to the point they would ask to read it , some were granted others not.Plus it allows you to ask intellegant questions and record answers for later and other family members.
Good Luck! Love and prayers coming your wayJackie
Dear Ashley – I am so sorry that you have to fight this fight on top of everything else. If the hospital administration, director of nursing/clinical care, director of social work don’t get on this within an hour of you bringing it to their attention tomorrow morning, there are other places that you can place a complaint. Please post right away and I will give you more information if you need it. Accrediting bodies is one place to complain, although they won’t act immediately. State licensing board for physician, although they won’t act right away either. I would immediately get the hospital officials involved as Lainy said. Please let us know right away. No one should have this happen to them. No one. Try to get her transferred immediately.
Ashley – Lainy said it all… fight for your Mom, make a fuss, and stand your ground. You and your family will be in my thoughts and prayers tonight and in the days to come….. I hope you can all find peace, and kick some doctor ass in the process.
Jen
OH My, what a horrible turn of events. I was my husbands advocate while he was at the VA Medical Center in Milwaukee and I had to STAND UP to the doctors more than once to get what he needed. Since your mom can’t speak for herself someone has to be willing to take a stand and get some answers.
At one point while Tom was in the hospital, his room mate went to the bathroom (pee) on the floor by the sink in the middle of the night then put paper towels over it. When I walked in at 7:30 am I could smell the urine. By 9:30 countless nurses and staff had been in and out of the room. The smell was so bad and no one was cleaning it up (you mean they could not smell it?) that I finally went and found the head floor nurse and brought her into Tom’s room and pointed it out to her. It was cleaned up right away, but I filed the complaint because people are in the hospital to get well and then to have pee on the floor for over 6 hours and staff is just ignoring it?? The head of the hospital then came to see me and he was moved to a different floor to a private room. If no one says anything, nothing will be done. I’m with Lainy on this – get to the head honcho of the hospital and get some answers, or make arrangements to MOVE your mom out of that facility as soon as possible!
Prayers are coming your way.
Hugs,
MargaretI agree with Lainy. If they can transfer your mom to another major hospital, she needs to go. She isn’t going to get better if they don’t know what to do with her. I am so sorry she is going through this and I am praying for your family to have strength during this difficult time. Please post again soon and let us know what happens. We are all here for you.
Oh, Ashley, what a nightmare. Guess I would be making heads roll!!!! I would copy what you posted here and take it to the higest ranking person in the hospital and tell them they are killing your Mom. Tell them that the least you expect them to do for what they have done is to make arrangements NOW to transfer her (they should do the transfer) to the nearest major Hospital which would hopefully be MD Anderson in Houston. Not sure how far that is. Do what ever it takes to get her out of there. Grrrrrrrr I get so angry at this, sorry. Stand your ground. They should have never accepted her in the first place let alone under false pretenses. Good luck and keep us posted.
Last time I posted I was griping about the “clinical trial” in San Antonio that my mom was supposed to be in. Well, not only did that happen, but after my parents had traveled 9 hours to get there, they lied to them and her oncologist here at home. She was not in the clinical trial, they were going to radiation instead. 1 month ago today was admitted to the hospital for pneumonia. While there, the hospitilist, oncologist told us that this was the end and once she was released from there, we needed to go home with hospice. My dad suggested that the surgeon look at the scan one more time to ensure that a liver resection wasn’t possible. Dr. Shane Holloway looked at her scans and said that he felt like he could do the surgery. I asked him if he felt confident with that..he assured me that he even sent moms scans to friends that are also in the same field and they would have done the same. She turns 47 tomorrow and he said that was one of the reasons for his decision. She has too much to live for and its her only chance of hope. He said she had a high chance of liver failure during surgery and for the week following. Well, from that point, they put in a feeding tube to get her nutrition up, treated the pneumonia and surgery was done on April 26th. She was in there for 8 1/2 hours..they removed 70% of her liver, 3 lymph nodes. Dr. Holloway felt that the surgery went better than expected during the week of recovery. However, things are falling apart. To start off, our stay at the hospital has been horrendous. We had a “hospitalist” get into a heated conversation about God and mom dying. It came out of no were that we are christians and he is muslim. Needless to say, he was quickly off the case. Mom has starting diminishing. She has an infection somewhere that they cant find. Billirubin levels are now at a 14. ammonia and WBC are also high. They haven’t fed her food in 3 weeks or hooked up to the feeding tube in over a week. She has only been allowed ice and water. They are still giving her diuretics and amino acids. There are so many doctors that keep taking turns, one orders something and the other one doesn’t agree so they take her off. Just like TPN, she was given that but then the surgeon took her back off of it because its too hard on the liver. Yet, day before yesterday I went up to the hospital and she was getting it again. Her hind end is so raw that the skin is peeling off and bleeds everywhere. Her chest tube was removed and now she is feeling up with bile, her bag from her liver is still pouring out fluid and the bag from her abdomen is still filling up with blood. She also has a NJE tube to suction out her stomach because it is 100% non functioning right now. The doctors have no plan and don’t know what to do with her. Nurses have left open needles in her bed and they are taking advantage of the fact that someone from our family has been there with mom 24/7. It takes them at least 30 minutes to come into the room when requested and you have to ASK for anything that needs to be done, including changing out her IV and pain pump. She sleeps all day and night when she is not going to the batroom with watery diarrhea. She is talking crazy about having a baby, looking for frogs in her bed and reaching for things that aren’t there and in the meantime she pulled out her feeding tube last night that she just had replaced earlier that day. Needless to say, I’m lost, we are all lost on what to do. The people who you put your trust and faith in are failing us…they dont know what to do and have admitted that. The good Lord sure has answered many prayers thus far and we have all our faith in Him. Just not sure on what to do..mom is not living or even recovering..she is dwindling away. Please tell me what you would do…we need to take action fast. We are her only advocates..she doesnt even know whats going on.
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