I have been putting this off for a long time. Ugh. So here we go.
My dad is not well. He had surgery on Aug 13th to take out about 5 inches of his ulnar bone in his arm (near the wrist) where the cancer started. That surgery seemed to go well. In that surgery they also took out all the surrounding structures: muscles, tendons, arteries, nerves, nerve bundles, etc. On Aug 23rd he had another surgery to 'harvest' about 17 inches of muscle, fat, tendons, arteries, and nerves from his left thigh to then try and fill in the marked divot in his right arm and hand. He was in the hospital for about a week following this. He has a special protective splint on his arm. He is not able to use this arm at all. He was eventually placed into a nursing home near the hospital. Mainly because there is no one at home to help take care of him. Here's where things start to get dicey:
TUESDAY: I pick dad up from the nursing home to take him to his oncology appt in Santa Cruz. He is unable to walk. At all. Cannot bear weight on the left leg, Cannot do a damn thing to be perfectly honest. I figure it's just par for the course considering he also had major surgery on his leg to donate to the right arm. At the oncology appt I look closely at dad's arm and leg. They look good actually. I'm not an expert, and I'm not a doctor, but I've seen my fair share of gross surgery sites with all of James' back surgeries, and I also work in a hospital. Dad's leg wound is flat and straight, not swollen, and you can see a large void in his thigh where the muscles and such were taken from. (On my own I email dad's OTHER oncology doc, who is overseeing the entire care, and I also email his surgeon to tell them Dad cannot walk, and I think this is unusual.)
WEDNESDAY: I try to call dad at the nursing home. His roommate answers the phone and tells me there's no Mark, and hangs up. Swell. I call the nursing desk and they take the portable phone to him, but it's too far from the nursing desk, so the reception cuts out. Swell. I ask is they can wheel him out to the nurses station so I can talk with him, but he is not up to it. Shoot.
THURSDAY: I try to call dad's room again. No success. I call the nursing station again and go through the same exact scenario. Finally I tell them that I am just confirming they will be able to take him to his post-op appt on Friday with the surgeon at his office. They say yes, it's all set up, and they can transport him in the special van so he can stay in the wheel chair the whole time. Ok. Great. I said, please tell my dad that I will meet him at his doctor's appt tomorrow at 1145. ok.
FRIDAY: I get to the doctor's office at 1120 in case they get him there early. I don't know if they will help wheel him in or what, I want this to be as smooth as possible for him. At 1130 I go upstairs to the doctor's office and ask if he has already checked in. No, he hasn't. Ok. Back downstairs I go. And I wait. And wait. And wait. At 1150 I get antsy. I know these doctor's time is precious. But of course I don't have the nursing home # on my cell phone. I left it on my desk at work. I text my sister in law and ask her to google the #. She sends it. I call. And say, "My dad is supposed to be here for his post-op appt. I'm here waiting and he's not here yet. It was supposed to start 10 minutes ago." They fumble around a little bit. "Sorry. Guess we forgot to call you. Your dad was having complications and sent to the ER." Seriously!?!?!?!?!?! Instead of high tailing it to the ER, I have a rational moment. I go back upstairs and ask to take my dad's appt slot with the doctor. The front desk folks are a little caught off guard, and don't think they can make this happen. I ask to speak with the MA. She says she'll need to talk with the doctor first. Fine. Whatever. This is a good doctor. It's in his best interest to know the details of this patients.
I meet with the doctor. We talk about the emails we've been sending back and forth since Tuesday. I tell him dad's been coherent, and both surgical sites looked good on Tuesday. I do express concern about what I perceive to be lack of care or not enough care for dad at the nursing home. We agree that I will go to the ER and I will email him ASAP with what I see. OK
I get to the ER. Which is a process unto itself. Parking is almost hidden. You have to be screened by a security guard to even get into the waiting area of the ER. Then wait in line. Patiently. Or as patiently as possible. I finally am taken back to see dad. He is pale, and sweating. He is shaking. He recognizes me, but can only mutter DUPLICATE over and over and over again. No other words. He moans in pain, his eyes roll back in his head. His blood pressure is sky high. I look at dad's arm and it looks fine. I look at dad's leg and it is awful. So SWOLLEN and red and angry and leaking. It's about 3 times as large as his leg should be. And he has a fever of 103.7.
I email his surgeon and say: HE IS HAVING TROUBLE TALKING. NOT CLEAR. LEG LOOKS SIGNIFICANTLY WORSE TO MY UNTRAINED EYE. :(
I sent that at 1:08. I guess Dad had just gotten there a little bit before. They start taking blood samples and arranging for a CT Of his leg. There's quite the flurry of ER docs around him. I'm trying to be quiet in the corner so they don't think I'm in the way and ask me to leave. I'm trying to listen and comprehend the words and terms they are using. Just filing it away, to draw from later. At 1:28 I see his surgeon (who, by they way I'm borderline in love with for taking such fast action) with his scrubs on, and his surgery team walk in and take over. (That means he got my email, upped and left his office practice across town, and came here.) Oh sigh of relief, at least for the time being.
They do a thorough work up of dad. CT of leg is positive for a massive hematoma in his leg. (Pooling blood) which probably started small, and ended big, and along the way became massively infected. He's acutely ill in septic shock. His kidneys have shut down. He is delirious and they order a CT of his brain. This comes back negative, everything looks fine, no stroke, just probably the sepsis and the fact that his kidneys aren't working and can't filter out any of the toxins. The next few hours are a daze as they take him in and out testing, more samples of this, shots of this, IVs of that. Papers, explanations, ICU consults, my signing as his next of kin, authorizing consent for surgical and medical intervention in the event they need to preform life saving measures to keep him alive. Oh shit. Here we go.
After 4 units of blood,4 bags of plasma, 2 bags of IV fluids, several shots of vitamin K to help his blood clot, and some other things I think I've forgotten, his surgeon and team take him into the OR. While in there they re-open his leg and find 4 units of infected blood that has infected his leg from his knee to his groin. They infuse an additional 3 bags of blood, and 3 bags of platelets, and debride (scrape and remove) all infected skin, tissues, muscle that has made him so ill. He will need at least one additional surgery in a few days to close the leg wound.
After a few hours which seemed like DAYS upon DAYS.... the surgeon emerges and says he thinks they have gotten to the cause of the problem. They were not able to close the leg, so two wound-vacs have been placed to keep draining the surgical site. I am able to see dad a bit later in the Stanford ICU. He is still confused. But not in any pain.
SATURDAY and SUNDAY: Dad remains in Stanford ICU. He mentally seems better a little bit each day, but is easily confused, and still not clear on what has happened, where he is, or why. His kidneys begin to work a little bit and this is encouraging. His blood pressure does not seem well controlled and gets high often, which they then treat. His fever is now gone, but his blood sugars are way out of whack requiring insulin, which he has not needed before. His hematocrit is better but not great. They debate another blood transfusion, but decide to hold off for now. Sunday night he is deemed enough better to 'graduate' to INTERMEDIATE ICU. Fantastic. I accompany him there for that move, and leave late again.
MONDAY (today): I get a call from dad (this is BIG! this means he is with it enough to know to call me, AND they let him use a phone!) he tells me that he is still confused, and he is not doing well and is in an excruciating amount of pain. Let me tell you: these are strong words to come from my father. He NEVER complains. EVER. I tell him I'm leaving now and will be there in an hour. I spent several hours with him today and not for one moment did he have any pain relief. (It looked like labor actually.)He was more alert, still confused but less than yesterday, and he moaned in pain the entire time. Oh daddy. :( As of tonight, he still resides in Intermediate ICU.
I don't know when he'll get back to the OR.
I don't know when or if he'll be strong enough to be discharged from the hospital to a skilled nursing facility.
I don't know when he'll be able to get another round of chemo in Santa Monica. If he has more than a 6 week lapse, he will be dropped from the study.
And I don't know that he will ever be strong enough to have the next surgery, which was supposed to be a thoracic surgery to take the 4 cancerous tumors from his left lung.
There is not much to be done by waiting friends and family. Just pray. A LOT. Especially for his pain relief. He is not up for visitors. Well wishes are best sent either through me, or to his voicemail.
And let me just say, that I am officially NOT A FAN OF LABOR DAY WEEKEND. ARGH!!!!! This is the same weekend last year when James' downhill slide started.
Please don't let this be a repeat. :(