tag:blogger.com,1999:blog-345844712024-03-12T15:03:07.764-07:00On Multiple Myeloma Andre's PerspectivesThis blog is written by and about a guy with an incurable form of cancer. My purpose here isn't to say "woe is me", but to give insight about my thoughts, perspectives, and experiences throughout this adventure. My name is Andre. My partner's name is Ed. I intend to publish on a pretty regular basis here, but Ed might occasionally pop in with his thoughts too.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.comBlogger449125tag:blogger.com,1999:blog-34584471.post-73764801611531596842009-08-01T13:32:00.003-07:002012-07-23T01:25:11.803-07:00Andre's Obituary NoticeMy brother-in-law works for the weekly paper where we had <a href="http://www.dallasvoice.com/deaths-july-31-2009-1019678.html" style="color: yellow;">Andre's obituary notice</a> published. It was also mentioned in a <a href="http://roadracingworld.com/news/article/?article=37539" style="color: yellow;">roadracing magazine</a>. We are planning a secular memorial service (celebration of his life seems to be the better term) in Dallas, Texas, next Saturday, August 8, a day before my birthday.<br />
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To all who sent me condolences, words of support, and their fondest memories of Andre, I want to thank you from the bottom of my heart. Take care of one another.<br />
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Hugs,<br />
Edmotopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com13tag:blogger.com,1999:blog-34584471.post-41881803838216936282009-07-25T16:54:00.003-07:002009-07-25T17:03:22.111-07:004:21 PMAndre died today in my arms. He was handsome until his very last breath. I've thanked him for the 9 wonderful years we've spent and for making me happy. I love him so much and I'm going to miss him dearly.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com33tag:blogger.com,1999:blog-34584471.post-90830711601196129932009-07-16T18:50:00.003-07:002009-07-16T19:26:14.057-07:00ICU Day 2828 days. Andre has been on the ventilator and in the ICU for 28 days. <br /><br />Today is probably the lowest I've felt since the initial diagnosis, and my heart is close to breaking. I know I'll catch my bearing again to take better care of Andre and my other responsibilities but the road ahead just feels so much lonelier.<br /><br />He had an MRI and a lumbar puncture two days ago to check if there is anything wrong with his nervous system that can explain his lack of lucidity and constant agitation. The results all came back negative. The only thing left to do clinically is to continue dialing down the sedative, pain meds and other medications that can cloud his mind, and hope that he comes out of it. And when he does, I'll be the first one he'll see.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com12tag:blogger.com,1999:blog-34584471.post-74608882286885831822009-07-12T17:34:00.003-07:002009-07-12T19:24:31.024-07:00ICU Day 24Roobeedoo, Spiritwoman, and Andre's weekend doc all suggested that playing music might help Andre relax. My initial notion was that silence is best in not agitating him. It seems I'm wrong. I started with classical music to relax Andre but he seems to get excited every time a piece reaches its crescendo. New age seems to be the same. I ended up sticking to ballads and "lite rock"--it looks to be just right.<br /><br />For this weekend, I had to pushed the doctors to be more aggressive with getting Andre off sedation (i.e., lowering the Versed they're infusing into him). They and the nurses seem to be trigger happy with bolusing him with the sedative every time he "wakes up" fidgeting. I can understand their concern about alleviating the discomfort of their patients but in Andre's case, their usual methods have only resulted in him being more despondent. Additionally, I've noticed that the nurses are quick to give sedation because it makes their job easier. I had to convinced them to give Andre several minutes to calm himself down every time he "wakes up" by gently explaining to him where he is at, what's going on, and what he needs to do. I know this works because I've done this several times. Doing this over the weekend, we've managed to cut his Versed level by a quarter.<br /><br />Andre made and answered several requests this weekend during those intermittent minutes of cognition. He's able to answer simple questions (e.g., are you in pain, are you hot, are you cold, etc.?) and to give me kisses. He appreciated my trimming of his facial hair and cleaning his ears (he was able to indicate that his ears were itchy). He was also able to signal to us if there is something that's making him uncomfortable (e.g., having to pee, having a bowel movement, the telemetry electrodes and wires digging on his back, etc.). I'm taking all of these as signs of progress. I hope it continues in the right direction.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com8tag:blogger.com,1999:blog-34584471.post-78313950318781517692009-07-10T20:43:00.002-07:002009-07-10T20:53:49.702-07:00ICU Day 22I'm back in Seattle after being in Vancouver since Wednesday afternoon. I've kept up on Andre's progress by calling the nurses at least three times a day, but the day nurse today was quite thoughtful. She called me an hour before the end of her shift to tell me about Andre's progress. He's been breathing on his own (with pressure support from the ventilator) since 9 AM this morning. The respiratory therapist had just put him back on the ventilator at 8:30 PM to rest him for the night. The remaining issue is still the level of his sedation. He's still being kept quiet most of the day. I hope tomorrow they'll go back lowering the sedation while he's breathing on his own.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com6tag:blogger.com,1999:blog-34584471.post-60355684785002005802009-07-08T11:12:00.002-07:002009-07-08T11:25:07.252-07:00ICU Day 20 - AMAndre was completely sedated when I came this morning. I had another "incident" with a physician today, this time with the new attending oncology doc. It seems I'm losing my patience so I need to just calm down just like what I tell Andre.<br /><br />Completely asleep but with titered down sedation, they put him on pressure support ventilation at about 10:30 AM. He started stirring half-an-hour later and bingo!--he went into his usual agitated state. I don't know what else to do and it seems the pulmonary & critical care team are also running out of ideas. I heard them say, "maybe we can ask psychiatry if they can help". Argh!<br /><br />And on a different note, I need to go back to Canada to deal with some personal and work-related issues. My work has been very understanding of our current situation but I do feel the need to get more work done since I'm technically not on a leave-of-absence.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com4tag:blogger.com,1999:blog-34584471.post-61430557000833562772009-07-07T22:28:00.003-07:002009-07-07T23:35:57.524-07:00ICU Day 18 and 19Monday and Tuesday are very similar days to a degree.<br /><br />They started weaning Andre off the sedatives and he responded with differing degrees of agitation. The biggest battle is always when he's waking up from sedation and sleep in the mornings. He would shake his entire body, breathe rapidly, increase his blood pressure and heart rate, have V-tachs and SVTs, and pull off everything that's attached to him--the electrical leads, the feeding tube, and the breathing tube attached to his tracheotomy tube. He managed to remove the breathing tube on Monday morning so the nurse had to put him on restraints which was very difficult to witness. I hope Andre doesn't hate me for allowing that since it was done with the best intentions.<br /><br />Tuesday was worse than Monday in terms of his agitation. To make matters worse, Andre has a new pulmonary & critical care fellow in-charge of his care. During Andre's most agitated state which occured at about 12:30 PM, she ordered a couple of tests that I didn't agree with--an arterial blood gas and a chest X-ray. The nurse also questioned the orders but only to me. I had a problem with the arterial blood gas because it's a more painful process than a simple venipuncture (they have to go deeper with the needle to reach an artery) which can increase Andre's discomfort. They also haven't done arterial blood gas measurements on him for at least two weeks since they took out his <a style="color: rgb(255, 255, 0);" href="http://en.wikipedia.org/wiki/Arterial_catheter">art-line</a>, and his venous gas level has been a good enough estimate of how well his gas exchange is doing. In fact, they've been doing only venous gas level measurements on him everyday for the last two weeks through his central line--a process that is painless and non-invasive. The fellow's defense of the going the arterial route is that she wants to look at his O2 level even though she admitted that she is more interested in the blood CO2 and pH, two numbers that can accurately be derived from the venous blood. I pointed out to her that Andre never had any problems with his O2 level and that the O2 sensor attached to him 24/7 had never indicated any issue with his O2 saturation. My problem with the chest X-ray is that they've just X-rayed Andre in the morning (in fact, he gets this every morning) and doesn't need the extra radiation exposure since the "respiratory event" that she's so worried about is clearly agitation induced and nothing out of the extraordinary. She would have found this out if she had talked to me, listened to the nurse, or have read his charts. They did do the second X-ray of the day and as I expected, it came back with clean results. She also would not listen to the nurse when told that Andre required some bolus of sedatives throughout the day to maintain his calmness.<br /><br />It took calling the attending doctor to finally let the nurse give Andre more sedation to rest him for tomorrow. They've taken off several sedatives/pain meds for the rest of the day so they can "re-boot" on how they're balancing Andre's pain and agitation with his wakefulness.<br /><br />The good thing about these last couple of days is that when Andre is calm and semi-awake, he manages to communicate with me and the staff. He kisses me when I ask for them (although at one point, he withheld his kiss when I apparently pissed him off for not understanding the words that he was mouthing and I kept shouting at him to calm down and control his breathing). He's able to tell us if he's in pain and if he wants to be turned. He also understood the news about Ben Spies, Sarah Palin, and Michael Jackson (I don't know though if he'll remember them). The funniest thing that Andre did was when he gave a sarcastic smile to his nurse who gave him high praises for being able to dangle his feet off his bed during physical therapy. It was classic Andre.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com1tag:blogger.com,1999:blog-34584471.post-56056513511294886812009-07-05T18:07:00.002-07:002009-07-05T18:25:09.370-07:00While you were sleeping...I want to update Andre on "newsworthy" events he missed while he was recovering from his surgery on June 18.<br /><br />Here is my list so far:<br /><ul><li>our 9th year Anniversary (July 3rd)</li><li>our friends' (Pam & Suzie) move to the Bay Area<br /></li><li>US Independence Day (July 4th)</li><li>Canada Day (July 1st)<br /></li><li>celebrity deaths: Michael Jackson, Farrah Fawcett, Billy Mays, Steve McNair</li><li>Nadal not defending his Wimbledon title due to injury; Federer winning his 6th Wimbledon championship</li><li>Gov. Sanford admitting to his affair with an Argentine woman</li><li>Sarah Palin abdicating as governor of Alaska</li><li>Coup d'etat in Honduras</li></ul>I'm sure there is some motorcycle racing news I'm missing. If someone can fill me on on that one, I'd appreciate it.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com6tag:blogger.com,1999:blog-34584471.post-25215966536377526012009-07-05T11:19:00.002-07:002009-07-05T12:17:53.815-07:00ICU Day 16 and 17There isn't much to report on Andre from yesterday, July 4th. His medical team had started tapering off his sedation. They did a CT scan of his chest to look at the infection in his lungs. And they started him on what they call "<a href="http://www.ccmtutorials.com/rs/mv/psv.htm"><span style="color: rgb(255, 255, 0);">pressure support</span></a>" ventilation during daytime. At night, he back on full ventilator support.<br /><br />Today, the CT scan result shows nothing significant. There is no spreading or enlarging of the remaining small nodules in his lungs. His white blood counts have also improved a lot so that should help with fighting the infections. He's awake right now, and able to nod and shake his head to respond to questions, he mouths words and tries to get up--all good signs.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com3tag:blogger.com,1999:blog-34584471.post-21702420163665957602009-07-03T18:38:00.003-07:002009-07-03T18:46:54.649-07:00ICU Day 15 (The Anniversary Issue)Exactly 1 year ago, Andre and I celebrated our 8th year anniversary by getting married in Vancouver, Canada.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEierAryFzssOcqA9h3UoLXDH9ab-zFzoHKU62t-4L-BZgQ2U54kzmt5Zfvev85Dutq-jTrIGMm-x6eyzEYs219_MYGAC2IwSP5f3LVLOp5H0QZxkhE4GrlNqj5GmYzQEurpv1cd/s1600-h/Wedding155.jpg"><img style="cursor: pointer; width: 256px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEierAryFzssOcqA9h3UoLXDH9ab-zFzoHKU62t-4L-BZgQ2U54kzmt5Zfvev85Dutq-jTrIGMm-x6eyzEYs219_MYGAC2IwSP5f3LVLOp5H0QZxkhE4GrlNqj5GmYzQEurpv1cd/s320/Wedding155.jpg" alt="" id="BLOGGER_PHOTO_ID_5354414065868359394" border="0" /></a><br /><br />Today, we're celebrating it quietly in his hospital room--no fanfare, just whispers of encouragement and love, and tender caresses to remind us that we'll always be there for each other.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com6tag:blogger.com,1999:blog-34584471.post-1590220581593599212009-07-02T10:53:00.002-07:002009-07-02T11:18:12.135-07:00ICU Day 13 and 14Today is exactly two weeks after Andre's surgery. There's nothing much to report since it's been a pretty quiet day-and-a-half. They did another breathing trial yesterday which lasted for about three hours before they put him back on the ventilator--the reason, he "woke up" and started breathing faster and shallower. Right now, he's back breathing on his own again. It's been at least an hour-and-a-half. Let's see how long he can go this time.<br /><br />Tomorrow is the tracheotomy day, at 9 AM. I signed the consent for the procedure yesterday, and the otolaryngology surgical resident who consented me told me I'm the first caregiver/patient to ever ask about the difference between a tracheotomy and a tracheo<span style="font-weight: bold; font-style: italic;">s</span>tomy. I asked because he kept calling the procedure the former while the pulmonary & critical care doc kept calling it the latter. The resident's bottomline response is that the former is simpler procedure, and typically temporary. I'll take his word for it.<br /><br />I've been slowing packing the house. Our realtor clarified to me that we don't have to move out today. That's a relief.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com3tag:blogger.com,1999:blog-34584471.post-11609633517263944612009-06-30T21:42:00.002-07:002009-06-30T21:55:43.232-07:00ICU Day 12It's been a quiet day and the night promises to be the same. It's a waiting game right now with the surgeons. As usual, everyone is a slave to their schedule. I'm hoping they can do it soon so that Andre can be alert on July 3rd--our special day.<br /><br />The highlight of the day is that Andre, fully sedated and with the breathing tube down his throat, breathe on his own for more than 10 hours. There was really no reason to restart the ventilator but the respiratory technician wanted to give Andre some rest for the night. This proves to me that as far as lung mechanics and physiology is concerned, there is nothing wrong with Andre. I think what happened yesterday is still the inability of the docs to find the right level of sedation to balance consciousness and pain control. When they took out the breathing tube yesterday, Andre was not awake enough to cough out all the secretions in his lung that were blocking his breathing. He'll still need to be able to do this even with a tracheostomy tube but if he can't, it will be easier for the docs to put him back on the ventilator compared to re-intubating him through the mouth.<br /><br />So even with an excellent breathing trial today, the plan remains the same: tracheostomy. I'll let you know when the surgeons get their act together.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com3tag:blogger.com,1999:blog-34584471.post-14833698895493849432009-06-29T16:48:00.004-07:002009-06-29T17:30:07.148-07:00ICU Day 11When the pulmonary and critical care fellow came in Andre's room this morning he declared, "Let's give Andre a shot at extubation. Everybody deserves at least one chance." He wanted to see if Andre can be spared the tracheostomy which was all but certain from Sunday's meeting with his attending physician.<br /><br />So, they lowered Andre's sedation and put him on a breathing trial. After an hour of him breathing on his own and having good blood gas levels, they pulled out his endotracheal tube. This was at around 12:15 PM. Three hours later, Andre was re-intubated because he was in distress as evidenced by his fast and shallow breathing, his blood numbers in the abnormal range (lower pH and high CO2 concentration), and his inability to cough out the secretions in his lungs that were likely contributing to his rapid respiratory rate.<br /><br />He's still asleep from the anesthesia that the doctor gave to him for the intubation process. I'm just here at the hospital waiting for the doctors to come by so I can give my consent to Andre's tracheostomy. Thank goodness Andre and I did our legal paperwork right after his diagnosis almost three years ago. The power-of-attorney sure does come in handy for folks like us who are denied the automatic legal protections that comes with a civil marriage.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com4tag:blogger.com,1999:blog-34584471.post-86705939760334901462009-06-28T10:50:00.002-07:002009-06-28T11:26:47.281-07:00ICU Days 9 and 10Saturday and Sunday for Andre has been relatively quiet except for short bursts of V-tachs and SVTs everytime he was agitated. The docs have held off on the Haldol since it can exacerbate his arrhythmia.<br /><br />He was able to breathe on his own for 35 min yesterday until he started getting agitated again which made his breathing labored. They'll do another one today but the docs had already concluded today that a tracheostomy is warranted for three reasons: 1) they expect Andre to require some ventilator assistance with his breathing until the dead space in his lung resolve itself; 2) longer term ventilation is best done with a tracheostomy tube than an endotracheal tube, and; 3) the tracheostomy tube will probably lessen his agitation everytime they take him off sedation.<br /><br />The tracheostomy will likely happen early this week since the July 4th weekend is coming up. The risks are the same as in any surgery--bleeding and infection--but the procedure itself is relatively minor as it can even be performed in his hospital room.<br /><br />Everything else about Andre's condition--his kidney and liver functions, the infections--are moving in the right direction albeit in baby steps. He recognizes me and he responds to questions during those few minutes when his sedation has worn off. He's still there which is the most reassuring thing in this whole debacle. I hope that on July 3rd, he'll be more cognitive so I can greet him a "Happy Anniversary".motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com7tag:blogger.com,1999:blog-34584471.post-32029775188743641622009-06-26T21:26:00.002-07:002009-06-26T21:45:45.420-07:00ICU Day 8 - PMAndre's Versed sedation for tonight is 2x his usual dose. They need him to be more rested for tomorrow's breathing trial. The respiratory tech again had to make adjustments to the ventilator settings because Andre's blood CO2 level was increasing. High CO2 level leads to lower pH of the blood or acidosis which can be causing the V-tachs. Apparently, Andre's heart had also exhibited <a style="color: rgb(255, 255, 0);" href="http://en.wikipedia.org/wiki/Supraventricular_tachycardia">SVTs</a>.<br /><br />A step forward for Andre this afternoon is the removal of the second (and last) chest tube. This should make Andre even more comfortable. I hope it's enough that he'll be less agitated when they do the spontaneous breathing trials this weekend. We would rather that the docs not resort to a tracheostomy. My darling had been through so much already. But as we always say to one another, "we have to do what we have to do".motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com4tag:blogger.com,1999:blog-34584471.post-24633123016224565252009-06-26T10:47:00.002-07:002009-06-26T11:32:41.664-07:00ICU Day 8One step forward, two steps back.<br /><br />That seems to be our story. It's only 10:45 AM in the morning and a lot of things had happened.<br /><br />First the good news:<br /><ol><li>The result of Andre's bronchoscopy (bronchoalveolar lavage) showed no infection. They didn't see any bacteria, fungus or virus, and because of this, he is no longer under respiratory isolation. We don't have to don facemask, gloves, and protective gown to enter Andre's room. I can now touch and kiss him.<br /></li><li>His kidney function continues to improve.</li></ol><br />The other kind of news:<br /><ol><li>Even though they didn't detect any infectious agent in his lungs, the docs think there's inflammation there that needs to be controlled. The inflammation is what they call <a href="http://www.fhcrc.org/science/clinical/ltfu/faqs/post_transplant_lung.html"><span style="color: rgb(255, 255, 0);">BOOP</span></a> ( bronchiolitis obliterans organizing pneumonia) which can contribute to the significant dead space in his lungs. To address this issue, they will increase Andre's steriod dose from 70 mg every other day to everyday (maybe more if they don't see any improvement either physiologically or radiographically).</li><li>He was so distressed this morning that his bedding was soaked in his sweat. He also had another V-tach which happened while the docs where checking on him. The V-tach could have been caused by having too much fluid in his system, having high CO2 levels in his bloodstream, the Haldol, or any number of things. The good thing is that it resolved itself afterAndre's sedation was increased and they made changes to the ventilator settings. He's more comfortable now. </li><li>They're not going to do any breathing trials today because of his condition this morning. They'll do them again over the weekend. If by Monday morning the pulmonary critical care docs decide that he's nowhere near getting extubated, they'll call in the EENT surgeons to do a <a style="color: rgb(255, 255, 0);" href="http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/002955.htm">tracheostomy</a>. They do this for patients that are difficult to extubate. The patient would still be on a ventilator after the procedure. Tracheostomy tubes are preferred over regular breathing tubes because of several reasons: it makes the patient feel more comfortable because there's nothing in the mouth that can activate the gag reflex; no straps around the head are required to hold the tube in place; there's less chance for erosion to happen in the mouth area; and there is decreased chance of damaging the vocal cords which can happen with regular breathing tubes.</li><li>His white blood count remains steady but low.<br /></li></ol>I hope the afternoon will be less "exciting".motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com3tag:blogger.com,1999:blog-34584471.post-65468778887322209372009-06-25T22:44:00.003-07:002009-06-25T23:33:31.654-07:00ICU Day 7It's a relatively good day for Andre. He did a spontaneous breathing trial--him breathing on his own--today that lasted for about 35 min. The CO2 level in his blood after the test was still higher than normal but it was close. Shortly after the test, the pulmonary critical care doc decided to put the ventilator on an as-needed mode (I think he called it pressure assist). Andre managed to breathe on his own for another 2 hours before he "woke up" agitated from sedation. Everyone was happy with the work he had done today. I'm happy too.<br /><br />The preliminary results of Andre's bronchoscopy so far shows no bacterial infection in his right lung. As a precautionary measure, they added another antibiotic--Vancomycin--on his meds list. Andre's kidney function is also showing signs of improvement which is another reason for me to be happy.<br /><br />For tomorrow, it will be more of the same for Andre--spontaneous breathing trials coupled with the sedation level balancing act. As for me, I need to start packing what's left of our Seattle home. It's mostly Andre's garage/workshop that I need to move. If our realtor doesn't drop the ball, the signing to close on our house sale is on the 2nd of July. It'll be a busy weekend.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com8tag:blogger.com,1999:blog-34584471.post-38950061248708255052009-06-24T22:40:00.002-07:002009-06-24T23:31:12.775-07:00ICU Day 6Sorry for the late posting. I went out for a hearty dinner with a former colleague who is also a very close friend of ours. It was good to take a break from the hospital, and I know Andre didn't mind.<br /><br />Andre had a relatively busy day today. He had a bronchoscopy early this morning. The did this so they can find out if the spots they saw on his chest X-rays are from another infection. I got to watch how it's done. It involves running a fiber optic cable down the mouth all the way to the lungs. Once in the area of interest in the lungs, the doctor can either get a biopsy or squirt some saline solution which they recollect (minimum of 30 ml) for examination. It's the latter procedure--called bronchoalveolar lavage--that they performed on Andre. They'll do molecular diagnostics (e.g., PCR) and culture of the washes to identify the infectious agent. Once they know, the infectious disease docs can make a rational decision on the antibiotic cocktail that the patient should be on. I'll let you know when the results are in.<br /><br />Another thing they did with Andre is to change the device that holds the breathing and feeding tubes. Andre was quite fiesty this morning when they were doing his oral care. He was biting hard on the tubes, and was making the ventilator alarm to go off. The new device has a built-in bite guard.<br /><br />They lowered the dose of Versed and Fentanyl so that Andre can be easily awaken when they do the breathing trials. To combat his agitation, they've added <a href="http://en.wikipedia.org/wiki/Clonazepam"><span style="color: rgb(255, 255, 0);">Clonazopam</span></a> to the mix. They did not do a breathing trial today because he was too sedated after the bronchoscopy. He managed to wake up and, according to the nurse on duty, was responding to questions. I missed this bit because I was at home showering and doing the laundry. They said they'll wake up Andre from sedation early tomorrow so they can do the breathing test. I promised him that I'll be there. I hope he'll do well.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com3tag:blogger.com,1999:blog-34584471.post-31629665541708797542009-06-23T16:22:00.003-07:002009-06-23T17:29:32.003-07:00ICU Day 5Andre is still heavily sedated. He seems to be calmer today as well.<br /><br />He did better on his spontaneous breathing trial (SBT) today than yesterday, but it is still not good enough to be off the ventilator. The respiratory technician added a humidifier to the ventilator setup. I'm taking this as a sign that Andre will probably have the breathing tubes for several more days. I hope I'm wrong.<br /><br />They did a chest X-ray today to see if the <a style="color: rgb(255, 255, 0);" href="http://www.nlm.nih.gov/medlineplus/ency/article/002947.htm">chest tubes</a> that drain the fluids and check for air leaks in the lungs can be taken off. Everyone of Andre's doctors agree that getting these tubes off will decrease Andre's discomfort. I hope the surgeon's will take them off soon.<br /><br />A sonographer was also called to do "<a style="color: rgb(255, 255, 0);" href="http://www.deep-vein-thrombosis-symptoms.com/articles/dvt-diagnosis/doppler-ultrasound.php">Doppler ultrasound</a>" to check for clots in his legs (DVT). Her unofficial verdict--because it's the radiologist who does the read--is that there are no clots in his legs. Thank God that's one less possible cause for a pulmonary embolism. As I mentioned in yesterday's blog, the docs can not confirm if the dead space in Andre's lungs is due to an existing pulmonary embolism because they can't do a CT with radio-contrast due to his poor kidney function. I know they are closely monitoring his fluid intake to get his kidneys up to speed. I forgot to ask what their plan is to address the dead space in his lungs (NOTE TO SELF: ask this question to the pulmonary critical care doc when he comes in for his 2nd visit of the day). I hope there is a plan.<br /><br />Andre's attending oncologist also spoke to me today. She's not one to cite statistics, but I think she was trying to impress on me the precariousness of Andre's condition--some people recover and some don't. She mentioned all the things that they're addressing. According to her, the medical team's main concern is still the infection that he has in his lungs. They're worried that the pathologist not only confirmed the fungal and viral (CMV) infection in his lungs, but also found Gram-negative bacteria (definitely <span style="font-style: italic;">Pseudomonas aeruginosa</span>; I don't know if there are others). Andre continues to be on antibacterial (Levofloxacin, Imipenem and cilastatin), antifungal (Amphotericin B and Posaconazole), and antiviral (Foscarnet) medication. The better way to fight the infection is for Andre's bone marrow to start producing white blood cells again in sufficient numbers. He's been able to do this before but not currently probably because of the myelosuppressive side effects of some of the drugs that he was/is on. The docs have pared down Andre's medication to the essentials. I hope this, plus the <a style="color: rgb(255, 255, 0);" href="http://www.rxlist.com/neupogen-drug.htm">G-CSF</a> shots that they've been giving him since before the surgery, will work soon.<br /><br />I continue to hope.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com11tag:blogger.com,1999:blog-34584471.post-80388212880897375202009-06-22T18:38:00.003-07:002009-06-22T19:18:38.791-07:00ICU Day 4Today has been a difficult day for my husband. Andre had a <a style="color: rgb(255, 255, 0);" href="http://en.wikipedia.org/wiki/Ventricular_tachycardia">V-tach</a> episode at around 8:30 AM this morning. It took the docs about half-an-hour to get it under control with <a style="color: rgb(255, 255, 0);" href="http://en.wikipedia.org/wiki/Midazolam">Versed</a> being the one that worked. The Versed was supposed to be a pre-medication prior to using a defibrillator because they thought they had to shock him to get his heart to slow down; good thing they never did. The docs think that the V-tach is likely a stress response of the heart due to surgery and pain, and not due to other potential sources (e.g., an infection or an underlying heart problem). They've made changes to his sedation cocktail (taking out Propofol and Haldol, and sticking with just Versed and Fentanyl). They've also taken away some of the drugs that they suspect might be suppressing his bone marrow's white blood cell production. They need the marrow to start up so that he can better fight the lung infection that he has (fungal, bacterial, and CMV), and also to help heal the wounds from surgery. Another reason they've change some of his medication is that his kidney function is not as good as before the surgery.<br /><br />Andre's lung does have a significant volume of dead space (basically air goes into his lung, but no gas exchange happens because the blood vessels are not "contacting" with the lung's alveoli). A potential cause is a blood clot in his lung which they can't confirm by imaging because a CT scan of the lung will require a contrast reagent that is bad for the kidneys. They'll do some imaging of his legs tomorrow to see if there are clots, and if there are, they can put a <a style="color: rgb(255, 255, 0);" href="http://en.wikipedia.org/wiki/Inferior_vena_cava_filter">filter</a> in him to make sure that these don't make his already precarious situation worse.<br /><br />I asked the doctor directly if he thinks it's time to call in his family. He said "no", and then assured me that he'll be forthright about it when it's time.<br /><br />Andre is still sedated and sleeping. I hope he's having some wonderful dreams--maybe of him riding his motorcycle, and maybe of me.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com8tag:blogger.com,1999:blog-34584471.post-84393998514258374652009-06-21T13:16:00.004-07:002009-06-21T16:15:49.480-07:00ICU Day 3I have no idea when the pulmonary doctors will take Andre off the ventilator. His arterial blood gas from this morning still showed elevated CO2 even though he is relaxed and fully sedated. The docs are thinking it might be due to having too much carbohydrates in his TPN (his "food" that goes directly into his bloodstream), or more likely due to Andre having significant <a style="color: rgb(255, 255, 51);" href="http://oac.med.jhmi.edu/res_phys/Encyclopedia/DeadSpace/DeadSpace.HTML">alveolar dead space</a>. Unfortunately, the people who can measure the latter only works on weekdays. As for the TPN issue, they want to increase what they started yesterday which is delivery the nutrients via the feeding tube . They first need to review what the GI docs have found last week in terms of his GVHD in the gut.<br /><br />In the wee hours of the morning, Andre had an episode that the docs refer to as "ICU delirium". They gave him an extra dose of Haldol to relax him. What worries me about his current level of sedation is his lack of responsiveness to the folks in the room. As an example, he "woke up" half-an hour ago (1 PM) for about 10 minutes but I was not able to communicate with him. He just looked dazed and not there--it scared me to think that his mind isn't there. I want my old, feisty, middle finger-giving Andre back.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com7tag:blogger.com,1999:blog-34584471.post-506136364170764052009-06-20T22:05:00.002-07:002009-06-20T22:24:10.248-07:00ICU Day 2Andre is still intubated. The pulmonary critical care docs decided that Andre's breathing is still too labored to be off the ventilator. When they did the spontaneous breathing trial this morning, Andre was breathing great at the start (he was taking in as much air in his lung as any normal adult according to the docs). But several minutes into it, he started getting agitated which bumped up his blood pressure, increased his breathing, and put his arterial blood gas in the abnormal range (the CO2 concentration was the main discrepancy).<br /><br />Because of the anxiety that Andre is exhibiting, they started him on <a href="http://en.wikipedia.org/wiki/Haloperidol">Haldol</a>. He's getting it every 4 hrs if I'm not mistaken. I hope the Haldol will do its magic and that the docs can take out the tubes tomorrow. They've also started giving him food via his feeding tube, on top of the TPN that he's getting by way of his central line.<br /><br />It's 10:20 PM right now and Andre is sleeping. I'm staying the night in case he ask for me.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com4tag:blogger.com,1999:blog-34584471.post-74194192447416110002009-06-20T21:30:00.003-07:002009-06-20T22:03:51.433-07:00Andre's giftsAndre gave two gifts this morning.<br /><br />When I checked my cell phone at 8 AM, I noticed a missed call and a voice message time stamped 2:18 AM. The caller was Andre's night-shift nurse, Ken, and his message was that Andre was adamantly asking for me. Ken's phone call did not wake me up because I had inadvertently left my phone on vibrate. Imagine how my heart had felt when I heard that message. It broke my heart to hear that he wanted me and I wasn't there. So after listening to the message, I hurried to the hospital.<br /><br />When I got here at UW hospital this morning, he was as awake as one can be with the painkiller and the sedative on tap. I communicated with him by asking him questions that required only a yes-or-no answer. But he gestured that he wanted to write down something. After 5 minutes of illegible writing, I told him to just relax which he did.<br /><br />Half-an-hour later, Andre's oncology doc and PA came in the room for their morning rounds. As they were talking to him, he started gesturing that he wants to write something. So I took the dry-erase board off the wall and gave Andre a marker. I thought he was going to write down what he wanted to say to his doctor--whether he was in pain, nauseous, cold, hot, or something else. Instead he wrote down "I LOVE U" and started pointing at me. My heart just melted and my knees went weak. I had to hold back my tears since I didn't want the other people in the room to witness my crying. Below is Andre's first gift of the day (pardon my lack of picture-taking skill).<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRnsZ0TDnffWIOvIxfoMswzwdhKExVivcxGwjvyJLcvcoNP3y0g4oVACMHyxsSe8ne0xkNNfSpiBhGI7P3e7kvk_Ltfw6b-eZtd5glgvt98uG3QNFneN1xEr2VVtZQrQ6VuoHt/s1600-h/P1030098B.JPG"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRnsZ0TDnffWIOvIxfoMswzwdhKExVivcxGwjvyJLcvcoNP3y0g4oVACMHyxsSe8ne0xkNNfSpiBhGI7P3e7kvk_Ltfw6b-eZtd5glgvt98uG3QNFneN1xEr2VVtZQrQ6VuoHt/s320/P1030098B.JPG" alt="" id="BLOGGER_PHOTO_ID_5349640508303430818" border="0" /></a><br /><br />Andre's second gift was to the daytime nurse. He gave her the middle finger when she was being pushy (she was really just doing her job). That's my Andre!motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com5tag:blogger.com,1999:blog-34584471.post-88728724566984532492009-06-19T20:02:00.002-07:002009-06-19T20:07:14.848-07:00ICU Day 1 - PM<meta equiv="Content-Type" content="text/html; charset=utf-8"><meta name="ProgId" content="Word.Document"><meta name="Generator" content="Microsoft Word 11"><meta name="Originator" content="Microsoft Word 11"><link style="font-family: arial;" rel="File-List" href="file:///C:%5CDOCUME%7E1%5CEd%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml"><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><style> <!-- /* Font Definitions */ @font-face {font-family:Tahoma; 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charset=utf-8"><meta name="ProgId" content="Word.Document"><meta name="Generator" content="Microsoft Word 11"><meta name="Originator" content="Microsoft Word 11"><link style="font-family: arial;" rel="File-List" href="file:///C:%5CDOCUME%7E1%5CEd%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml"><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><style> <!-- /* Font Definitions */ @font-face {font-family:Tahoma; panose-1:2 11 6 4 3 5 4 4 2 4; mso-font-charset:0; mso-generic-font-family:swiss; mso-font-pitch:variable; mso-font-signature:1627421319 -2147483648 8 0 66047 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:Tahoma; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.0in 1.0in 1.0in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;">The pulmonary critical care (PCC) docs decided to keep Andre attached to the ventilator.</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">Results of his several spontaneous breathing tests (they turn off the ventilator and have him on “sedation vacation” so Andre can be awake) show that he’s doing great in terms of his respiratory rate and his blood gases.</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">But because of the pain and discomfort, Andre then gets highly agitated and his blood pressure shoots up. </span><span style=";font-size:130%;" > </span><span style="font-size:130%;">The docs would rather take out his breathing tube tomorrow morning when they’ll have the whole day to monitor him instead of doing it tonight. </span><span style=";font-size:130%;" > </span><span style="font-size:130%;">They think it’s also helpful for Andre’s chest muscles to relax for another night by having the machine assist with his breathing.</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">They think this will help synchronize his left- and right-hand sides when he breathes.</span></p><p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;">
<br /></span></p> <p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;"><o:p> </o:p></span></p> <p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;">Earlier today, the PCC docs called an anesthesiologist for a consult. </span><span style=";font-size:130%;" > </span><span style="font-size:130%;">They wanted to know if Andre can have an epidural.</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">The anesthesiologist said that an epidural would be risky because of Andre’s low platelet and white blood cell counts, so the pain meds will just have to stay systemic as is the case now (via I.V. or through Andre’s central line). </span><span style=";font-size:130%;" > </span><span style="font-size:130%;">He also said that the pain management will have to be done by the PCC docs. </span><span style=";font-size:130%;" > </span><span style="font-size:130%;">He recommended to the PCC docs to use Dilaudid on a PCA (delivery of the pain med is controlled by the patient with a push of a button) but since Andre is not conscious enough, this might be tricky. </span><span style=";font-size:130%;" > </span><span style="font-size:130%;">We’ll see how they’ll do this tomorrow.</span></p><p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;">
<br /></span></p> <p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;"><o:p> </o:p></span></p> <p style="font-family: arial;" class="MsoNormal"><span style="font-size:130%;">It’s a little past 8 PM and I’m still here in Andre’s room because I wanted to check with the surgeons when they go on their last round of the day (they’re supposed to do one in the morning and one at the end of the day).</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">But guess what?</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">One of the PCC docs just informed me that if the surgeons haven’t come by yet, they are likely gone for the day.</span><span style=";font-size:130%;" > </span><span style="font-size:130%;">His advice: go home and come in early to catch the surgeons’ when they do their morning rounds. </span></p> motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com1tag:blogger.com,1999:blog-34584471.post-79329992523139251282009-06-19T11:40:00.004-07:002009-06-19T12:18:12.736-07:00ICU Day 1 - AMFirst off, I want to apologize for not responding to those who had left me messages. It's been a crazy 24-hr.<br /><br />Andre still has his breathing tube and chest tubes. He is sleeping right now.<br /><br />He was semi-awake when I came in this morning. He wanted to communicate more than the head nods and shakes he's able to do. He asked for pen and paper but his writing was illegible--not being able to see what he's writing probably didn't help. I wish it had crossed my mind that communicating can be problematic when you're intubated, and Andre and I could have devised a way of doing so prior to the surgery.<br /><br />At about 10:30 AM, I finally saw the surgical team. They apologized for not seeing me yesterday and gave the expected excuse that they were busy with other surgeries. They told me that they were conservative with the surgery. They only took out two "wedges" in his left lung (not the full lower lobe or the full left lung as was originally considered), and that the surgery itself went without a hitch. They looked at the two chest tubes sticking out of Andre's left flank, and they said he's doing great from their standpoint. Their only responsibility right now are those chest tubes which will come out in about a week, if I'm not mistaken. They will be back again later today to check on Andre.<br /><br />As the surgeons were about to leave, Andre started getting agitated. His pain meds must have been wearing off (he's currently on a Fentanyl drip for pain and getting Propofol via I.V. as a sedative) and he started trying to get the tubes out of his mouth. The ICU nurse had to strap down his right arm while I was holding down his left arm. It's good to note that Andre is strong enough that he's able to push back against me but it's bad for his breathing to be exerting that much. As the nurse was delivering a bolus of pain meds into Andre, the pulmonary critical care docs came in. They are the ones in-charge of when he'll get extubated. Their main concern is still the same: strike the right balance between pain control, sedation, and consciousness. If they take out the tubes but Andre is still in a lot of pain, then they expect his breathing to become labored which might necessitate him getting intubated again. On the other hand, if he is too sedated, they can not take out the tubes because he might not breathe strongly enough. They've called for the anesthesiologist to look at Andre and see if an epidural can be put in. The anesthesiologist during the surgery yesterday decided against it because Andre's platelet count was low. He was given platelets this morning so an epidural should be possible now.<br /><br />I'll post more later this afternoon.motopacsmanhttp://www.blogger.com/profile/09621276947884643241noreply@blogger.com2