Irv Update - September 2011 #16

Dear F&F; Today we learned that after getting the vancomycin doses since yesterday afternoon (I'm not sure how many doses) Irv's kidney function level of creatinine rose dramatically. Vanco is cleared/processed by the kidney. So, now he is going to have a kidney ultrasound in 4-6 hours. He ate a small amount of food and so has to be without food or water from 4-6 hours for the test. Otherwise he slept well and is looking better every day. Too bad tomorrow he will have a major surgery. Right now it is scheduled for 10:00 AM. Beautiful day in Seattle, but very warm. The hospital doesn't have any air conditioning in this old tower so Irv has a fan blowing on him constantly. I just sit in the corner and suffer. More news as I get it. Penny

Irv Update - September 2011 #15

Dear F&F; Irv's heart settled down overnight and he is mostly in a normal sinus rhythm. He was up for short walks that he managed successfully. Unfortunately, he is growing a new bacteria called enteroccus. Is is often a hard bug to treat so he has been put on a "big gun" antibiotic called Vancomycin. He is now on two IV antibiotics. Plus, I can't remember if I mentioned it before, but he is also growing yeast. Both of these are in that pleural fluid that surrounded his right lung. His electrolytes are low, probably because there isn't any bile going thru his digestive tract - it is all draining into a bag outside of him. So he has to take these huge potassium pills that even cut in half he has a hard time getting down. Surgery is still scheduled for Saturday. Dr. Biehl was in and said that he isn't completely sure what will be done: first, Irv still doesn't have a diagnosis, and second, he has no idea what he will find after he opens up Irv's abdomen. With the complete bile duct blockage and the previous small bowel obstruction surgery, plus pancreas abnormalities, it could be a right mess! The possibility of a modified Whipple will be listed on the consent form for surgery. Scary stuff. We have had several management types visiting us and "listening to our concerns." Sure they are, they are just putting on a big show since I pissed and moaned so much. One GI person stated that Dr. Siegel DID know that Irv has a bowel blockage. I don't believe it. Dr. S. apologized to me for perforating the pleural space, yet when I told him about the bowel blockage he didn't say "Oh, yes, I knew about that." He said not one thing referencing the blockage. The words never came out of his mouth. Makes me wonder if he really did. In other words, I have yet to suspend my disbelief. I have requested that one GI doctor we had only met for about a minute after he did a procedure on Irv in the spring, NEVER talk to us again. He came in to chat yesterday. I found him to be condescending, arrogant and his opinion of the nursing staff was insulting. He's the one that told us that "most doctors do not read the RN chart notes, but expect the nurses to verbally tell the MD's if they have a specific concern about a patient." So, 95% of the care of a patient, according to Dr. Gan, isn't important for the doctors to take the time to read about. ALL the medical records here are electronic so there isn't any handwriting difficulties, etc. What a bastard!!!! Where is a phaser set to 'stun' when you need it? If this is an example of "Team Medicine" it is obvious the team of Dr. Gan doesn't include the nursing staff. On we go. This is a hard journey Irv and I are taking. In 6 months I hope to look back after gazing fondly at my healthy husband and say: NEVER AGAIN! We have suffered enough. Penny

Irv Update - September 2011 #14

Dear F&F; Well, Irv is feeling better, still having a hard time keeping his oxygen level up, but usually doing adequately. BUT, now he is having heart issues that are NOT atrial fibrillation. It is now a very erratic heart rate with pre-ventricular contractions (PVC's). Some kind of ventricle problem. OMG! The staff tried to walk with him again and all hell broke loose with his heart rate. The telemetry people called down to this floor in a panic about his readings. People came running. I just told Irv to quit causing so much trouble as we were all getting tired of it! They got him into a wheechair, more O2, deep breathing, etc. 30 minutes later calm has returned and he is in bed doing Sudoko puzzles. I have gotten a lot of response to my tirades of yesterday and have been promised "this will be taken to the next level, st least" and I may be contacted by people in various positions within the organization, etc. Blah, blah, blah. Mea culpa's all over the place. I am biding my time. As I've said, the final outcome of this and what permanent, if any, consequences Irv suffers will determine what I/Irv will do. After I left yesterday the surgical team came in. Irv told them that there wasn't any way he was going to be discharged from the hospital this time until he is "fixed" and everything that has to be done is done. Dr. Biehl, the surgeon, stated that "well if you were discharged there are several very nice hotels close by where you could stay." The rooms near here in Seattle are at least $200/night up to $500 or more. Maybe on his salary!!! WTF? Who does he think we are anyway? It is a very good thing I wasn't here or Dr. Biehl would have a whole new lower backside! I really cannot believe he said that. Irv couldn't bring himself to berate Dr. Biehl. The chicken. That is all for now. Penny

Irv Update - September 2011 #13

Dear F&F; At 0410 AM I got a call from Virginia Mason that Irv wasn't breathing well and they were going to intubate him and put him on a ventilator. Irv adamatly refused. By the time I got there he was doing somewhat better. He wasn't keeping properly medicated for pain as he would fall asleep and not push his button (every 8 minutes he can get a dose) until he was in too much pain to keep sleeping or the alarm would go off because his oxygen level was too low. He was so exhausted after so many days of trying to breath with only one lung plus being in the hospital where it seems sleep is so hard to get with all the interruptions that he did manage to sleep somehow and was causing himself all these problems. He is getting better today, but was only able to take about 15 steps from his room before he was too tired and breathing too hard to continue. He has formed some fluid (plural edema) in the right lung - a not very common complication of the fluid being removed from the space. Isn't he special? I was pretty demanding of the doctors today to tell me what was going on and why. The admission was made by the intervention radiologist that he did puncture the pleura with the placement of the second bile drain tube. But when he said how rigid and resistant Irv's bowel was to get the drain into it I realized that no one had told him that Irv had a bowel blockage in that area. The doctor could push contrast fluid thru the tiny opening, but left to itself the drain couldn't work because it was smashed in the blockage. He also showed me CT pics taken on the 14, the day of the pancreas biopsy, the day after he was discharged, that showed the presence of fluid in the lung space. The GI doctor said he was unaware ("we missed it") that the external drains were leaking copious amts of bile before he was discharged. That would have precipitated another tube check wherre they might have found the blocked drain. Can you say medical malpractice? Don't these specialists talk to each other? I don't know where to turn or how to fix this mess. World Class medical care? I think not. I am exhausted and tried to have a nap, but since in my panic this morning I forgot to take the computer with me to the hospital, and people kept calling me to find out what was going on I finally gave up to write this. Sorry! There are possible long term side effects of the bile invading the pleural space. We still need to have the corrective surgery for the bile duct blockage. Another drain has been placed along with the chest tube yesterday and will continue to drain to the outside until that surgery takes place. No idea when, but Irv and I refuse to have him leave the hospital until it is done. He still doesn't have a diagnosis. Every doctor admits that. Again, I don't know where to go or what to do now for my husband. I hate this feeling. Penny

Irv Update - September 2011 #12

Dear F&F; As we expected, but were still worried about, Irv doesn't have cancer of the pancreas. Whew! He will still need an open abdomen surgery to correct the bile duct blockage permanently. We go to Seattle on Thurs., have a doctor appt on Friday at 11:00 AM and then surgery sometime on Saturday. (Yes, Saturday!) The docs expect that Irv will have to stay in the hospital 5-6 days. I plan on staying with Dianne and Sharon in their palatial 5th wheel trailer. The pups will have to go to the kennel (doggie prison) again. Stella and Izzy were so excited to see us today. Since then they have been sleeping! Probably don't get much sleep with all the kennel activity. They woke up at dinner time to remind us to feed them, but otherwise they are down and out! We are very happy to be home, even for only a week. Any further news and I'll let you know, but for now, a respite for you all from the daily drama of the Huntsinger's. Penny and Irv

Irv Update - September 2011 #11

Dear F&F; We had a tough drive home. Every semi-truck and slow driver in the entire northwest were on the roads we were on. There was an accident that closed Hiway 97 from Toppenish to Goldendale so we had to go to Mabton and then take a narrow, twisty, two lane road to Bickelton and then on to Goldendale. Put us way behind and we missed being able to pick up the puppies by 25 minutes! $#@^&)*&^% I say. We will have to drive about 120 miles round trip to pick them up tomorrow. Our sore travel butts don't think that is a good idea and we are sure the pups knew we were coming and are very angry with us! People have asked how long the pathology takes. Well, pathologist are prima donna's and do not work on the weekends and apparently only up to 8 hours a day, not more. We hope for results tomorrow, probably not until Monday. GRRRR. With the way insurance companies, etc. push people out of the hospital you would think that the path docs would have to change their ways in order to get people the care and treatment they need in a timely manner. I'm cleaning up the house, dealing with all the paperwork for tax purposes and our own medical record keeping and doing laundry. We only expected to be gone 4 days, not 10! I did one batch of laundry at the motel, but........ Irv hopes to sleep the entire night for the first time in 10 nights! We are finally tapering his prednisone dose so his glucoses are very erratic from that, as well as the blocked pancreatic duct. He is testing 4 times a day and we have only been able to skip one short-acting insulin dose since we were trained on Tues. That means 4 insulin shots each day! Puts a whole new face on what diabetes means to a person. When I know anything, you will know it. We probably will be returning to Seattle next Thurs. Sept 22, but await the path reports to be sure. Love you all; Penny

Irv Update - September 2011 #10

All went well. We await the results. If pos for cancer, Irv will have to have chemotherapy BEFORE surgery. We believe it won't be cancer. If that is so, we will come back in a week, Sept. 22 for appts on 23, and surgery on Sat. 24. Probably stay with Irv's Mom, not sure yet. Then we can bring the dogs with us. It is very expensive to kennel them, plus we do miss them! Back to La Pine today for some "home respite" before the saga continues. Thanks to you all for your wonderful support and love. Penny and Irv