Guest guest Posted August 24, 2003 Report Share Posted August 24, 2003 Joanne, Sorry to hear that Todd is still having such a rough time. I was hoping he would have had some relief by now. Hang in there, we’re pullin’ for you. Steve Rahn L Tx 9/6 & 9/8 '85. (Wash. U-STL) (re) Born on the 4th of July, 2003 (U of Iowa) www.presumedconsent.org " Do not go gentle into that good night Rage, rage against the dying of the light " (Dylan ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2003 Report Share Posted August 24, 2003 Joanne, I hope that if it becomes as tough for sometime, I will be able to do what you have done for Todd. My prayers are with you all. Judy (Mom of - 18 yr., dx PSC 7/03, dx UC 8/03) Still in the Hospital Hi all,Todd is still in the hospital with no change in the pain. They feel the pain is coming from his spleen being so enlarged and also the pancreas and liver being inflamed. He has been in so much pain and we have had a few really bad nights. Fortunately the past 2 nights they have given him muscle relaxers, and sleeping pills in addition to the demeral and benydryl and it has helped him sleep. I am not looking forward to today though, they are trying to do away with the pain meds during the day. Their fear is him getting addicted to them. I don't know how he will do it though. It is torture for him and also for me to see him in so much pain. Tomorrow we are hoping to talk to the transplant surgeon about living donor transplant. Fortunately his dad, myself and brother are all the same blood type as Todd, so we will see where that leads us. His itching is literally the "suicide itch". We have to change his sheets a lot because of the bleeding from the itching. I am so physically and emotionally exhausted, but I am hanging in there. I will try to sleep at home tonight and have his dad stay here, but all I want to do is be by his side. But I know to keep strong, I need to get a good nights sleep.Thank you all for your continuing prayers. I think of you all often, I can't tell how comforting it is to know I can always turn on the computer and the support is there. My prayers are with you.Joanne (mom of Todd, 17, psc 12/01, crohns 1/02, listed 7/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2003 Report Share Posted August 24, 2003 Joanne, please know that you are being lifted up by our prayers right now, praying that God will give the strength and support that you need to handle this and of course praying constantly for Todd's healing and wisdom for his drs. I feel your pain and exhaustion. ((((((( ))))))))) Hugs from Faith ('s mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Hi Joanne: Sorry to hear about Todd's relentless pain. I truly feel for you: Quantell screamed for the better part of 2 years while we were chasing a diagnosis. The strongest recommendation I can make (and the one thing I wish I had done a lot earlier) is to hook up with pain-control specialists. Most big hospitals have them, usually as an adjunct of the anesthesia department. At the consult, when a bunch of docs should be there, don't let them get side-tracked into the whys. Todd doesn't care what's causing the pain, he just wants it stopped. We went through several combinations of antispasmotics, muscle relaxers, straight-up analgesics and antidepressants. What finally worked was Nortriptyline and methadone. Even that combo took some tinkering on doses -- which is ongoing, and even more complicated in liver patients. (As the body adjusts to a pain med it usually has to be increased. But as liver function declines and drug clearance slows, dosages often have to be decreased.) It's key (or at least it was for us) to get a regular continual med schedule, and not wait for the pain to crest. But, we also had tylenol 3 for breakthrough pain -- and again, it's vital to learn to hit it at the first wince, and not try to tough it out. Methadone is not nearly as scarey as it sounds. And it also comes in an IV form, which made the postop weaning a whole lot easier. Nortyhriptyline does NOT come IV, and I still harbor a suspicion that the necessarily abrupt withdrawal caused some of Q's cardiac complications. If this last drug combo hadn't worked, I was considering acupuncture. My reservations with that were all based on how Q would have reacted emotionally. I do believe it works, in the hands of a skilled provider. We did use accupressure and massage during the worst spells, and both seemed to help. (One advantage of massage is that it's also a good time to slather on oil, which helps with the itching. Do seek out some instruction though -- I was advised to always go outward from the liver.) Hope this helps a little. Pam (mom to Quantell, 13, dx 1996, tx 2001, still fighting complications) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Joanne, I was thinking of you today, hoping that your online silence meant only what it turns out it did mean. As anxious as I was for some news, don’t worry, no one will begrudge you taking whatever chance you had to rest instead of posting here. The incident with the psychiatrist is truly outrageous! I’m glad Todd is finally starting to feel better, but sorry that it has taken so long. What are Todd’s labs like through all this/ have they updated his MELD score on the Wait List? And did they ever make a definitive diagnosis of the cause of the pain? Here’s hoping your ordeal won’t last very much longer. Hang in there. Steve Rahn L Tx 9/6 & 9/8 '85. (Wash. U-STL) (re) Born on the 4th of July, 2003 (U of Iowa) www.presumedconsent.org " Do not go gentle into that good night Rage, rage against the dying of the light " (Dylan ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Hi Joanne -- hope the methadone starts working soon. It was the answer for us (although just wait until you have to start figuring out where to get it every month). Sounds like your nurse from hell went to psych school too. I can offer a counter-story that may make you chuckle. About Quantell's second week in ICU, I requested a psych consult to order nightime meds. The resident who came was fascinated/fixated by the fact that Q and I aren't the same race. After the fourth time I said that wasn't really relevant, I did a Todd and dismissed her. The head of the department came down next, ordered the meds -- and moved Q to an isolation room, with lights that could be turned off at night. Ahh luxury. Hang in there. When the cafeteria workers start dishing up your lunch without waiting for you to order, then you'll really know you've been living in the hospital far too long. Pam (Quantell's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Joanne, Really glad that Todd's pain is letting up a bit and our thoughts and prayers are that he recover enough to go home. I would think another trip to the patient advocate with a formal complaint about the psychiatrist is in order. If Todd had been more depressed and less angry, this guy/lady could have done real damage and he might yet to another patient. Tim L Still in the Hospital > Sorry I haven't written in awhile, but every minute that I have had > to spare I try to shut my eyes. We are now going on 2 weeks for this > hospital stay. I am hoping and praying Todd will be going home in a > few days. I must say we have had some very upsetting days that were > emotionally and physically exhausting. I last wrote about how they > were trying to wean Todd off the Demerol. They were afraid he was > becoming dependant on it. I felt like I had to defend him, since > these pain management guys didn't know him, but him being dependant > was not the issue...the issue was that is the only thing they were > giving him that would help ease his pain. He was on the Fentanyl > patch for a week and that did not help him at all. He would cry to > the pain management doctor everyday telling him it wasn't working. > Some days were so horrible that he would go into fits and try to hurt > himself, crying that he couldn't take it anymore. He has even been > doing accupuncture to try to help. I can't say it has helped in the > long run with the pain, but at least while he is having it done he is > totally relaxed and pain free. And Todd thinks it is so cool. > Although I think it totally freaks out his GI doctors. They finally > decided that the patch wasn't working and have moved him to > methadone. It seems to be helping and today was the first day he has > been Demerol free. We had a scare 2 days ago. His nurse believes he > had a mild seizure, but the doctors were not willing to commit to > that. It was real scarey, but fortunately Todd doesn't remember any > of it. The unfortunate part was that his friends were in the room > with him when it happened and they ran and got the nurse. > > An update on the nurse from hell incident...We did complain to > patient relations and Todd has not had her since. Fortunately, we > have been blessed the past few days with wonderful nurses day and > night. But I must tell you all of this unbelievable incident we had > with the psychiatrist they brought in to help Todd to learn to live > with his pain and dealing with all of this. The dr. didn't know Todd > at all and had only seen him one other time for approximately 5 > minutes...well he came to see Todd when he was in a fit of pain and > was told he was going to weaned off the only drug that was helping > him...you can only imagine how scarey that was for him...well it you > can believe this he yelled at Todd telling him to act like a man and > suck up the pain. I couldn't believe my ears. Todd told him to get > out of his room and never come back. I actually was very proud of > him for sticking up for himself like that. We had a talk with the > psychiatrist and told him that he actually hurt Todd more than helped > him and we have since asked for different help. But now that Todd > is feeling some relief I definitely see a change in his mood. He is > back to making jokes and even had his friend ride him in the > wheelchair around the hospital today. > > So all in all I think we are starting to see the light at the end of > the tunnel with this hospital stay. I know we will all be thrilled > to get home to our own beds and back to some kind of normalcy. > > I hope you are all well and had a good Labor Day weekend. > > Joanne (mom of Todd, 17, psc 12/01, crohns 1/02, listed 7/03) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Joanne,So sorry you have had such a terrible time dealing with nurse from hell & evidently a dumb doc.(16,PSC & UC) goes to a children's hospital & they have always been understanding about pain- not as qick as she would have liked-but good though.She always has Morphine-it's her pain drug of choice & it works for her. Most hospital are very understanding of pain-maybe it's time for a different hospital? Hang in there & keep standing up for Todd-you'll both be home soon!!! -'s Mom Quote Link to comment Share on other sites More sharing options...
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