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Thursday 22 Oct 1998
Paige has been home from the hospital for a few days now, and is trying to get into some sort of rythym again. She's on soft foods and clear liquids. We write down everything she eats and all the meds she takes.
By Thursday it's been a couple days since anything moved through Paige in a normal fashion, so Dr. Lim tells us to go to a local ER and get her abdomen X-Rayed and have the radiologist call him. I take her to the Washington hospital in Fremont. I instantly do not like having Paige here. This place was fine when I came in and had a minor scrape, but right now I don't feel comfortable with her here. The film comes back, and it appears that there is some blockage, possibly an obstruction. Dr. Johansman of Washington calls Dr. Lim & they discuss. Dr. Johansman puts me on the phone to talk to Dr. Lim. Dr. Lim would feel more comfortable if she were back in the WCC. I couldn't agree more - the Washington hospital did not look like the same kind of tight ship that the WCC folks at Los Gatos have organized. Dr. Lim also said he did not think that it would really be an obstruction. He thought she'd be only constipated and that hydration and some medication would fix this.
7:50 pm: Checked Paige in to the Los Gatos Community Hospital again, at the Women's Cancer Center. Paige weighed in at 103.5 pounds. That's about 15 pounds off her regular 'fightin weight'.
Friday 23 Oct 98
Paige is visibly weaker today.
The ordeal at 4am of NG tube insertion (Nasal Gastric) is still fresh in my mind. Poor Paige, it took the nurses 4 tries to get it down (up through the nose, down the back of the throat and into the tummy). Paige was a trooper, but was visibly nervous.
Today, as I awoke, she appeared pretty "checked out." Her eyes would roll back into her head as she slept, and her lids were at half mast. The top eyelid was down, but the bottom one couldn't make it up to meet. She looked so hollow.
When she spoke she was still the same Paige I knew. I escorted her with the staff down to X-Ray for a 3 way abdominal panel. When she got up out of the wheelchair it was the first time in all of this (including the week after her initial surgery) that I ever saw her sway on her feet. I felt in my gut that something that was not right.
We got her back to the room and she was not seeming to be all there. Her usual alertness and energy was lacking. She didn't look like this at any point after round 1 last week.
A little later they called for more X-Rays that involved the use of a dye that shows up on the film (barium, I think). The dye was inserted via her NG tube into her stomach, and was tracing her intestines to look for perforations. This set of X-Rays seemed to take forever, and Paige was quite discomfortable through all of this. That's an understatement, she seemed fragile and pushed beyond her limits.
Once back in the room, Dr. Lim showed us other tests that they do on people to check for leaks in the bowels and she exhibited no symptoms. He was pushing and prodding and tapping around her belly and said a normal person if they had stool in the abdomen would be in agony right now. Paige showed no more discomfort than she had for the previous few days.
Yet she still seemed a million miles away. She said to one of the nurses that she just wanted to be her old self again. She also told Dr. Lim that she was hungry, and that she wanted a milkshake. This is another symptom that is inconsistent with leaks in the bowel.
I still didn't feel right. I probed and asked several nurses many questions about her condition, the urgency we should be feeling, her appearance and demeanor, etc. I told them her appearance was worse than I saw her with the epidural or morphine or the other heavy drugs. They said it was the Ativan effects lingering on, which was longer than usual because she had a double dose the night before and her kidneys were a little slow to process it at the moment.
They also said the urgency was low since she's likely only constipated, and that should not get any worse since her food intake has been cut off and the NG tube was in, which relieves pressure from the top of her GI system. "We're in a waiting game now, and it could take 2 days or a week, and it's OK," was roughly the replies I got.
Bob & I still knew that something was not right.
We left (with much apprehension, we'd later admit to each other) at around 7:15pm or so, and got home by 8. Joan paged me around 8:45 and mentioned she had been moved to an intensive care unit due to low blood pressure, which the doc's thought was due to intense dehydration.
The next page was the thunderbolt. < 8:53pm, 866-4086 > was the one that told me she had entered cardiac arrest. Joan was crying on the phone, saying that Paige might not make it, and a CCU nurse picked up the phone and updated me. She told me to get back with Bob to the hospital, quickly but not recklessly. [The ICU was full or something, so they put her in the CCU, Coronary Care Unit]. I replied to her 'We're on our way" and gave Bob minimal details.
That ride was one of the shortest for me and one of the longest for Bob. I was so focused on driving and just thinking 1 thought: BEAT, BEAT, BEAT, . . . as I envisioned myself telling her heart to keep beating. Bob, as the passenger, had the whole 35 minute ride to fret and worry. We arrived and he thought "Paige just hang on." Halfway through the ride I felt empty, like she was gone (maybe 9:10 pm or so). Bob later told me he'd mentally expected to be told as much upon arrival. I took a deep breath and forced myself to just keep thinking BEAT, BEAT.
We arrived at the hospital and rush in and are immediately told she's on a respirator. "She's alive?" I ask urgently. Yes, Joan told me.
We're then greeted by Dr. Spirtos who tells us that she should go straight in to surgery. First he explains it to us, that they confirmed stool in the abdomen, then asks us if we want to authorize the surgery, even if it risks her life.
No hesitation - Bob, Joan, Rob: do the surgery, do what you must to save her.
Prior to our arrival she had totally gone into cardio pulmonary arrest for a short period (30-90 seconds so I was told by first accounts, see below) before being brought back. Joan was telling us that Dr. Spirtos had come out and cautioned her to be ready to "Let her go." It was that close. It still is.
Re. Arrest: [per Dr. Spirtos explanation]
She was 'coding' for 3 minutes before they brought her back. This is well within the range where the risk of any permanent damage due to oxygen depletion to organs or brain is low. Damage takes more like 10 minutes. Also, he told me that they'd continued CPR and O2 such that her blood kept flowing the whole time and it was oxygenated. Thus if she gets through all this OK then there should not be any lasting effects of being dead for 3 minutes.
There, I didn't use a clever euphemism like 'out' or 'under' or whatever. Paige DIED last night and the surgeons and nurses and God and all those who prayed for her brought her back.
They let us see her for a couple minutes just prior to surgery, tubes & pads everywhere. Paige was alert, alert enough to recognize the 3 of us. She could not talk due to the respirator tube in her mouth. I did our customary 3 squeeze hand grip signaling "I love you" and she gave it back.
She was reaching out to grab us and pull herself up. It was so sad. I told her she had a good chance and she could beat this. She blinked at me. I then saw fear in her eyes. She trembled a bit and was nervous about surgery and everything.
They told us we had to go and then wheeled her up. An hour later Dr. Spirtos came by and told us it went well. They resected 2 segments of her bowel, making 2 'rejoin' joints/seams (they call it 'anastamosis') where they reconnect the bowel on either side of the piece they removed.
before: ======xxxx======xxxxx======= (xxxx are the bad sections)
after: ======|======|====== ( | is the seam)
One segment that was perforated appeared to be due to a residual tumor and the other due to some twisting or mechanical blockage (? I think).
The series of events that led up to the successful surgery are also miraculous:
> Shelly, her WCC nurse for that shift, made a quick call that she needed help. She trusted her instincts even though she did not have all the facts. She acted on the gut feel and did the right thing.
> The respiratory MD that came to help was not even supposed to be on duty at that time.
> They were going to move her to the ICU (Intensive Care Unit), but it was full, so they moved her to the CCU (Coronary Care Unit). This ended up being a better place to have her.
> The CCU shift nurses were changing, so there were 3 extra. These 3 were not even supposed to be there at that time, but they were. They had stayed a little later than usual on a Friday night.
There's a few more that I'm forgetting, but I'll add those in later.
Other signs that something was not right (I later realized this one). At around 6pm, a guy came by to do a blood gas test of some sort but had trouble finding a strong enough pulse. They told us that could be a normal side effect of the sleep medication. I was not convinced. The guy had stuck her, quite deeply since he was looking for an artery, and Paige did not even react. No flinch, no nothing, and she was not asleep. She felt to me like she was checking out, but did not recognize that is what I was feeling about her until later.
3:15am, Saturday 24 Oct 1998
They just let us in to see her. Her color is better, much better than it was for pre-op. She was gray as a ghost then; now she's pink & beige and healthy looking. She's also taking deep breaths, due to the respirator and also because she has room to breathe deeply now (no longer distended). Earlier she was so distended that she could only muster short, shallow breaths. Her heart rate was 130-140.
It's still scary to see her sedated on a table with a zillion tubes, but compared to 4 hours ago we are soooo happy. So thankful.
Just after they put Paige in the elevator to go up for surgery I went down to the WCC to find Shelly. I thanked her for doing what she did and said "No matter what happens now, you gave her a fighting chance." I was crying as I spoke.
After the surgery I thanked every nurse I could find that was part of the team that saved her. A couple of them spoke to us for a while, and confirmed the guardian angel thinking. "Sometimes you feel a little push now and then in the O.R." they were saying. They said tonight was one of those nights.
It's like the story of a man commenting to a musician how the 5 men in the band played so tight, so connected that it was amazing. The musician said "We weren't playing, we were being played." The team of surgeons and nurses in there tonight were being played.