Tuesday, June 30, 2009
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.
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.
Monday, June 29, 2009
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.
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.
Sunday, June 28, 2009
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.
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.
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".
Friday, June 26, 2009
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".
That seems to be our story. It's only 10:45 AM in the morning and a lot of things had happened.
First the good news:
- 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.
- His kidney function continues to improve.
The other kind of news:
- 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 BOOP ( 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).
- 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.
- 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 tracheostomy. 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.
- His white blood count remains steady but low.
Thursday, June 25, 2009
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.
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.
Wednesday, June 24, 2009
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.
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.
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 Clonazopam 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.
Tuesday, June 23, 2009
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.
They did a chest X-ray today to see if the chest tubes 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.
A sonographer was also called to do "Doppler ultrasound" 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.
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 Pseudomonas aeruginosa; 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 G-CSF shots that they've been giving him since before the surgery, will work soon.
I continue to hope.
Monday, June 22, 2009
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 filter in him to make sure that these don't make his already precarious situation worse.
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.
Andre is still sedated and sleeping. I hope he's having some wonderful dreams--maybe of him riding his motorcycle, and maybe of me.
Sunday, June 21, 2009
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.
Saturday, June 20, 2009
Because of the anxiety that Andre is exhibiting, they started him on Haldol. 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.
It's 10:20 PM right now and Andre is sleeping. I'm staying the night in case he ask for me.
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.
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.
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).
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!
Friday, June 19, 2009
The pulmonary critical care (PCC) docs decided to keep Andre attached to the ventilator. 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. But because of the pain and discomfort, Andre then gets highly agitated and his blood pressure shoots up. 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. They think it’s also helpful for Andre’s chest muscles to relax for another night by having the machine assist with his breathing. They think this will help synchronize his left- and right-hand sides when he breathes.
Earlier today, the PCC docs called an anesthesiologist for a consult. They wanted to know if Andre can have an epidural. 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). He also said that the pain management will have to be done by the PCC docs. 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. We’ll see how they’ll do this tomorrow.
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). But guess what? One of the PCC docs just informed me that if the surgeons haven’t come by yet, they are likely gone for the day. His advice: go home and come in early to catch the surgeons’ when they do their morning rounds.
Andre still has his breathing tube and chest tubes. He is sleeping right now.
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.
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.
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.
I'll post more later this afternoon.
Thursday, June 18, 2009
11:30 PM -- I'm back in our Seattle house. I'm home late because I opted to stay with Andre and wait for the surgeons to visit him. I was told by the ICU night nurse at about 9:20 PM that they'll check in on Andre. The nurse told them that I'm still around and would appreciate talking with them. I stayed for an hour-and-a-half longer but they never showed up. I decided against spending the night in the ICU with Andre since he's still heavily sedated. He would sometimes wake up from the drug-induced stupor, and would reflexively try to reach for the breathing tube to take it out. I can tell he's experiencing a lot discomfort and suffering whenever the sedative and pain meds go down a certain level. It's difficult to watch. The ICU night nurse who was still trying to find the proper amount of sedation told me that most patients don't remember the discomfort because one of the meds have an amnesic effect. I hope he will be one of those who do forget.
6:20 PM -- Andre is back in the oncology floor (8NE) but he is the ICU, as expected. I was in the surgery waiting room from 2:15 PM. At about 3:40 PM, Andre's daytime nurse called me to say that Andre is out of surgery and that I should wait for one of his surgeons to come talk to me about how it went. Two hours later, there was still no surgeon. I received a call from Andre's new nurse (the ICU nurse) at at 5:45 PM telling me that he is now back in the oncology floor of the hospital. I'm disturbed by the insensitivity of these surgeons, but I'll be patient and reserve the ass whoppin for tomorrow. Andre seems to be okay because when I first saw him, he was responding to the questions the nurse was asking him (If he was in pain? If he needed more pain meds? He answered yes to both). He has a breathing tube and is back to being fully sedated. The ICU nurse told me that her goal for the next couple of hours is to find the right balance between managing Andre's discomfort and keeping him responsive to questions. The last bit is important in judging how soon he be off the breathing tube.
11:30 AM -- I'm back in Andre's hospital room after the nurse and I transported Andre to the OR. This is it folks. Keep rooting for my man.
10:45 AM -- We're still in our hospital room waiting. The transfusion is over and Andre is waking up from the pre-transfusion medication-induced stupor.
8:50 AM -- Andre is sleeping will being transfused with whole blood. His nurse just informed us that he is the second person scheduled today with the cardio-thoracic surgery. The first one is not expected to finish until 10:30 AM.
Wednesday, June 17, 2009
On a different note, Andre was allowed to have some 15-minutes of fresh air yesterday. Unfortunately, all the gardens around the hospital are closed off because of construction, so we ended up just sitting by the sidewalk near the hospital shuttle stop. And as it turned out, the reprieve was only good for 1 day. We'll have to re-negotiate him being allowed outside of his hospital room.
Tuesday, June 16, 2009
Andre has indicated to the PA early this morning that he wants to leave the hospital. It is his right and I perfectly understand where he is coming from, but I know it's not the medically correct thing to do . The doctor and the PA promised to look into at least allowing Andre out of his room where he's been coop up since May 10 (outside of the 3 days that he was sent home, he's been in the UW hospital since April 28 and he was also not allowed to leave his room during that first hospital stay). Not being able to leave a cramp hospital room for that long will drive anyone nuts. Everyone directly involved in Andre's care appreciates his patience and understands that it's running short. We'll wait for them to talk to the oncology floor director to make an exception in his case.
I'm also doing my best to press the doctors to get the surgery done. I think part of Andre's reasoning for wanting to go home is that "nothing" is moving forward with the surgery carrot that they've dangled for the last two weeks. Most of you who've met Andre knows that he is not one to just sit and wait--he's a man of action. And now, the tedium is just too much for him to bear.
Hopefully, the next update will have better news.
Monday, June 15, 2009
3:40 PM -- WE ARE PISSED OFF!!! Andre's oncologist just gave us news that the surgical team does NOT want to operate on him today because his white blood cell (WBC) count is below their threshold. Every specialist on Andre's health care team (hem/onc, infectious disease, pulmonary, etc.) is fine with the procedure because they deal with oncology patients all the time who typically have low blood counts, but they've all been trumped by the folks who will do the actual cutting. The team is changing some of Andre's meds to help bump up his WBC numbers but if the surgery doesn't happen tomorrow, Thursday will be the earliest it can happen this week (if it can even happen this week). It took Andre and I several days to wrap our heads around this surgery, and then they come in today and put us back close to where we've started mentally speaking. It took a lot of self-control for Andre to not shoot the messenger.
2:05 PM -- Still waiting. Andre's nap is occasionally disturbed by warning messages from the overly-sensitive pumps he's attached to ("air-in-line") or by the urge to pee (they've been running fluids in him like crazy). The Social Worker was just in here because we had questions about his durable power of attorney for health care, his advance directive, etc.
11:50 AM -- We're still waiting. His oncology team just dropped by to tell him that the results of the chest CT scan was encouraging. The 41-mm lesion on his lungs' lower left lobe is now down to about 35 mm. Some of the lucencies (bright spots) on the upper lobe of the left lung seems to be smaller too. Nonetheless, the lower left lobe of the lung still has to go. The CT scan of his head showed no signs of fungal infection (this is a very good thing). His oncology team had started switching his medications to the IV-version.
10:40 AM -- We are still in his old room. Andre is napping after taking some Ativan (for nausea) and sucking on a Fentanyl lollipop (for pain). He had a chest CT done yesterday afternoon to help the surgeons decide how much surgery needs to be done; we're still waiting for the results. We haven't seen neither oncology nor surgical teams so we don't have any details yet. It's a waiting game right now which is a bit tough since Andre has been NPO since midnight.
Friday, June 12, 2009
Tuesday, June 09, 2009
Body weight, 138# with daily TPN. Holding steady.
GI system not working. Salmon is the only thing I can eat, practically. It's available, but it's a hospital kitchen. "Overdone" is the only way it's served.
Blood system, still not working. Deja ju, all over again.
Isolation. I'm not allowed out of this room except for procedures. Unless I'm being X-rayed, I'm a prisoner.
Rashes, infections, and afflictions abound, the result of living in the real world with no immune system.
So I walked in here and they got most of it under control this month. But sometime during my stay I inhaled a tiny little aspergillis spore and it settled in my lungs. Since it's settled into its new home, it's managed to carve out a nice little 41mm cavern out of my left lung.
And then the doctors all went into panic mode. Duh!
It was announced to me. "We're going to take your lung." It was suggested they'd try to get surgery to schedule me Tuesday (Today).
Well, after a lot of headbanging, a lot of brainwork, asking a lot of questions, it looks like surgery might happen next week sometime late IF it happens.
So, I get to wait in the hospital for another week, drugged until I quite literally "freak out". Given blood, treatments, platelets. Maybe surgery a few days later, then recovery time. Dunno what that means, really. I'm looking at another 30 days, but we'll work for the best. Will advise.