 |
|
| |
|
Saturday 31 Oct 1998
Yesterday & today Paige's stellar progress slowed, and even suffered a little setback. Last night she was leaking heavily from her bottom suture. Today Dr. Spirtos was in working on her. I was relieved to see him although I was not ready to see Paige's incision reopened. The prior night I knew that the band-aiding that the nurses were doing would not fix the root problem. I also had heard Dr. Lim mention the possibility of a 'Fistula' which might exist in her bowel. One of these can cause more leakage. I was hoping another surgery would not be required.
Thus today when I saw Dr. Spirtos in there working on Paige it was both awkward and unnerving AND relieving to see, all at the same time. I don't think anything can really prepare you for the sight of your fiancé with an 18 inch incision open in front of you, yet I was also glad he was in there, because that meant that everything that is possible to do to prevent another surgery was being done.
"Can't we just get a break?" he was saying. He moved swiftly and precisely at the same time as he worked. He did what top pro's do in any discipline, he made it look easy.
Her incision was not a huge, open cavity like it might sound. The big overlaid sutures were still in place, except for the bottom one. They only removed the staples and the bottom suture, so the wound was only about 1/4 to 1/2 inch wide. There was a ton of drainage out of the opening around the bottom suture. In fact, when Dr. Spirtos was done, her abdomen was flat again, the way I'm used to seeing it (the first time in 2 months it has not looked somewhat inflated).
Paige was her typical self as he worked. Joan & I were in there watching, and Bob just joined us. I asked if we should be in there, and Dr. Spirtos said "Sure, unless you're squeamish." At that point Paige looked at Bob and said "Dad I think you better step outside" and she went right back to watching the doctor work inside her abdomen.
Dr. Spirtos said her body, due to the infection, was doing a number on the cancer too. Must continue to think "blessing in disguise." It seems that sometimes a massive infection in the vicinity of the cancer can help wipe out the cancer too. It seems that the infection can infect healthy cells and cancerous cells alike, which the body attacks with the immune system. Under these circumstances the infected cells are destroyed, and the cancerous cells go right along with them.
Sunday 01 Nov 1998
Today Dr. Lim was in working on her, clearing drainage tubes and replacing dressings. She was in some discomfort today as he worked. Even so, she made some jokes about his shirt matching the yellow surgical gloves, and that he should consider wearing them around town, for golf, etc. Then Dr. Armstrong (aka Groucho) came in and she caught him too. Pointing to her NG tube, she said "Hey, I hear these tubes are in, do you want one too?" haha.
Dr. Lim said he's not convinced a fistula exists, but that they're taking precautions for it. She's on medicine now to relax/sedate her bowel. They want it to stop its secretions and to stop pushing stuff along in order to promote healing.
We're still very much day-to-day. We are hoping and praying that another surgery is not required.
Dave Lawson, one of her old colleagues from Vandenberg AFB was here Saturday night to see her. He was in Sacramento taking professional exams and drove in to cheer her up.
He shared a story with Paige about how he was hospitalized for 4 months at 16 years old for a disease/syndrome that caused polyps to form on the inside of his small intestine. The ensuing surgery removed all but 1 foot of his small intestine. He was on an external catheter (Hickman?) for 2 years after the ordeal, during which time he had to feed himself intravenously to supplement what he ate. His small intestine could no longer digest enough nutrition for him so the IV food was required until his large intestine learned how to act more like the small intestine.
He dropped to 80 pounds when the original 4 month ordeal was over. Additionally, his folks moved from Chicago to Colorado after 6 weeks, leaving him to fend for himself for the last 2 1/2 months. Helluva'n ordeal. Paige said her sense of hope was renewed after hearing what he went through, especially how long it took, and survived.
Monday 02 Nov 1998
Today things got interesting again. They took Paige up for a CT scan at 11:00am that really occurred at 5:00pm. Hurry up and wait. They put her on a table that they tilted on its side for the scan and moved her all around and stuck her with needles and biopsies and added a new tube and, oh by the way, punctured her left lung.
Now the lung piercing part turns out to be another one of those serendipitous things that seem to keep happening to Paige for her benefit. They discovered as a result of that mistake a ton of fluid in her upper torso cavity (her "plural space"). The fluid, aka pus, is a bunch of dead white blood cells and dead bacteria cells left over from the sepsis war that waged on the previous week as a result of the perforation that lead to surgery #2. Dr. Gordon Katske updated us on all this tonight. He says there is about a LITER of pus on the right side, which limits how far her lungs can expand when she breathes.
How did the infection get up there? Was her diaphragm compromised? no. There are small passages, the "Caverns of Twerm" he called them. I asked if he made that up or pulled it from The Hobbit (Bob said Wizard of Oz). Turns out they are really called that, although it's not spelled Twerm, it's thorem or therim or some such word. Anyway under normal circumstances these are downward flowing only, from lung cavity (thoracic) into abdominal. Cilia regulate the one way flow of things. However during her massive sepsis episode of 10/23 the pressures in the abdomen overwhelmed the normal flow of things and toxins got into her thorax.
If this situation where left unchecked permanent scarring and damage to the lungs could occur at the least, at the worst it is life threatening. We were lucky to have caught it now while it's fixable without lasting ill effects. This will be surgery #3.
The surgery required tomorrow to fix this is via scope, so the incisions are tiny, approximately the width of a fingertip. They go in with 3 'stab wounds' as he called them, one for the left hand, one eyepiece, and one right hand. They remove the fluid, etc. then go in with a tool that irrigates the inner cavities with a betadyne solution that sterilizes the area. Yay!
They are going to do the worse side tomorrow, then 2 days later do the other. This should clear up 95% of the toxins that she is currently trying to break down through her liver. After that's done, perhaps her liver can get on with other good stuff, like making protein so she can rebuild her body mass, he said. Now that's it for the thorax update.
She also has 3 abscesses in her abdomen too. They'll go after these with less invasive techniques, e.g. needles or even let them heal themselves once the big stuff is gone. I asked Dr. K "won't the infection spread north again, back into her thorax after you've cleaned it?" no, probably not. It's likely that it was up there due to the massive episode 10 days ago, but is not likely still 'traversing the caverns' (haha, I threw that in for effect). Additionally, the ongoing work of Spirtos/Lim should reduce the toxins in the abdomen too.
6:00pm, Monday 02 Nov 1998
While sitting with Paige tonight she gave me a scare. She was talking and mumbling in her sleep, but I didn't know she was asleep. I thought she was loopy on the drugs again. In fact she was acting in much the same way she did the night we lost her, or so I thought. She was chattering about nonsense, about needing to go to the grocery store, not finishing sentences, making noises, etc. I was nervous. Scared shitless is another way to say it. I went and got the nurse and said "watch her extra close tonight. I'm nervous. She acted like this last time." Her heart rate was up too (137) and her breathing was shallow. Same symptoms as last time. I started praying. Then she woke up, just like that, and was herself again. Whew! she's still here.
However, it still gets more interesting. She is leaking stool into her abdomen AGAIN. Her incision is still open, so it is draining, but WTF, over? is this that fistula thing? what do we do about that? I wonder if they are hoping this will heal itself. I'll ask tomorrow.
Tuesday 03 Nov 1998
11:00am - Dr. Viale, the anesthesia doctor, gave an update on her heart. He said that the data he is seeing indicates that there is a problem with it. It seems it's performing at a level below what they'd expect for someone her age, even for someone who's been through what she has. It's not squeezing as completely as it should, which contributes to the high heart rates (120's - 130's).
He's saying her heart is also enlarged, but Dr. Spirtos said this might be because she's an athlete. Dr. Viale said that she could have had some pre-existing condition or that this might all be due to the sepsis and fluid in her.
3:55pm - They're finishing Paige's surgery. They said she did better than they'd hoped. She will have a respirator tube in tonight, though.
Dr. Katske update: they took out 4 LITERS of fluid from just her right lung cavity!!! wow that's massive. She's a new person he's saying. Her physiology is improving across the board, pressures, etc. They'll do the left side on Friday, and expect a similar volume. The darn lung cavity is only about 8 liters to begin with, so this was 50% full of fluid! holy cow.
He also said she was pretty morbid going in. She was going under again on the table. They had trouble supporting her, her BP dropped (did he say 40/22 ?), they were pouring fluids into her, etc. Once they took out the pus she turned around almost instantly. He said she probably would not have survived another night had this not been done today. (see I did sense that the other night! trust your gut feelings on stuff like this).
Yet she walked twice around the nurses' station in the CCU today, I guess on sheer will, since her body was clearly not up to it. Damn she's tough.
He did the job today with only 2 small incisions. He said the scope technology enabled this to be successful today. If they had to go in the old way, via a large incision, the trauma would have killed her. We just seem to keep finding the exact right people just when we need them. He's a specialist in the upper body/thorax kind of stuff.
I overheard him later talking to the other doctors afterwards about when he irrigated her internally. "You oughta see what happens when I hit those bacteria, it's ugly" he joked. "They wish they never saw me coming." haha. He was giving the infectious disease specialist a hard time. "You guys just put other bugs into them (speaking of the antibiotics they use). But y'know, doc, the only good bug is a dead bug." haha. I like this guy.
Paige looks good. Her face is puffy due to the fluids she is leaking (common after surgery). They call it 'third spacing', when fluids leak out of the vascular system and into the body's tissues. I think the vascular system is the first space that the fluid is supposed to be in, and the tissues are the third. Dunno what the second might be. Anyhow, she has a respirator tube in throughout the night that they intend to take off at 6:30am tomorrow. It's being left in as a precaution. They intend to keep her asleep tonight and take the tube out tomorrow morning.
9:00pm - Was just in checking to see who her nurse is tonight, and saw her moving! That's not supposed to happen. She was wide awake and visibly nervous and shaken. She did not like the resp tube at all. I grabbed her hand and spoke to her, to tell her how well it went today, and that she should try to rest. I told her to try to sleep, and that they'd take out the tube at 6 tomorrow morning. I hope they do a better job of letting her sleep the rest of the night.