They always said that any person on a ventilator, any one in the ICU is in danger of not surviving. No matter how good they seem things can go wrong. I knew that, I accepted that. The fact that she was doing so well, and seemly so close to getting out of there didn't matter. Things did go horribly wrong. And I had to kiss my sweet sweet wife goodbye yesterday. She passed away at noon, Monday November the 2nd. 9 months to the day after her skin removal surgery. 9 months and 2 days since she was diagnosed. 9 months and 3 days since the first symptoms. She was literally surrounded by close friends and family when she went.
The technical stuff is a bit academic at this point but I'll at least summarize the main turn of events. On Saturday she had some bleeding inside her trachea, probably from the tube rubbing against the trachea or something. It stopped after several hours and since it stopped they didn't seem overly concerned. What I didn't understand until Sunday night at the hospital when Dr Clark explained it is that apparently when you aspirate blood into your lungs the coating works as a very efficient blocker of the lung membrane's job of getting oxygen into the blood and CO2 out. And she had very little good lung tissue to begin with. So she started having problems by mid day Sunday. Low blood pressure, trouble with respiration. A doctor called me at 10 or so saying he didn't think she was going to make it through the night. I found out they were having trouble at around 6:30 but didn't realize it was that serious - or didn't accept it - until that later call. I was shocked and felt somewhat numb. It didn't seem like it could be real.
The thing that did it in the end was that she couldn't get rid of enough CO2 from her blood. There were many complications, many downs, a glimpse of hope at 10:00 the next morning. But the CO2 makes you acidotic and at some point your tissue, your organs, your brain can't live in an acidic environment.
They didn't think she'd make it as long as she did. I guess it's a testament to her strength, and perhaps her well-known way of pretty much completely ignoring any opinion from any authority figure - anyone period, maybe - that doesn't fit within her own plan that she battled through until noon the next day. I'm so grateful that she made it to that next morning because the night before had been so shocking and so sudden that few people knew about it and came beyond immediate family. In the morning more friends were reached and were able to come. I'm sorry for anyone that would have liked to have been there but didn't know.
After nothing but grim predictions all night long at 10 or so in the morning her numbers actually started to improve. CO2 numbers had been literally off the charts - clearly unsurvivable - all night but came into range at that point. For the first time I thought she had some slim shot. Just before noon she burst a blood vessel in a lung which bled into her chest cavity. She was so tenuous, and that pushed her over the edge.
At midnight her acid levels had been so high (PH of around 6.9) the doctor called them incompatible with life and sent a sample to a second lab for verification because he seemingly couldn't believe it. Her CO2 levels - off the chart at the hospital - could be measured at the second lab. Dr. Clark said they were the highest he's seen in 25 years of practice in respiratory medicine (245 or so?). Yet her heart raced at 150 all night long, her kidneys and liver started to malfunction. They could delay the inevitable - for a few hours he said at 4 in the morning - by artificially lowering the acidity, but her lungs had to start working for it to be sustainable. Dr. Clark prepared me for what to expect in the end - heart failure. Yet it soldiered on undaunted until the vessel burst around 11:30 or 11:45. I've often suspected her heart to be the location of her secret power crystals, and so it has seemed throughout her illness.
Yes, she felt like a super hero - during the illness and before. But no. She is human. In the end could only take so much. We were close, maybe. But the burst vessel was too much. And so now she rests.
We are making arrangements this afternoon with the funeral home. A service will be set up soon and we'll post it here. If we need anything we have all the support in the world for it and I won't hesitate to ask. Mike and Linda have offered to take phone calls for anyone wanting to reach us and their numbers are Mike 206-778-5993 and Linda is 206-714-2508. <Update> You can also reach Linda by email at ladanderson@gmail.com
I'm so sorry. It should never have ended like this. But it did. All I can do now, other than cry a lot, is try to think, as i did for half the night, of how she was. The way she was. What made her so unique and so wonderful. We are all unique people, every one fo us. But the combination. Who she was. Yeah, I'm the grieving husband, but I don't think it's a stretch to say she was just on another level. I think anyone that knew her would say so. She had her way, and it was often very different. And refreshing and bright and beautiful and sometimes a gigantic pain in the ass. But she stood out so brightly and strong. She didn't care about norms or expectations and to the extent that she adhered to them when outside her ideas found them a great annoyance. And she loved so strongly and openly and deeply. She loved so many and so deeply it hurt. And you know it because she told you. And told you exactly why. Without hesitation.
I can't say it all here. I would like people to write down your Sandra stories and insights. It seems like everyone has one. I think it will be way too much to get through at the service. Perhaps we'll have a web site for them or something.
This morning Adriana woke and the first words out of her mouth was "mommy is the best teacher". Last night she pointed at Sandra's pillow and said "uh-ma" and mine and said "ah-pa" (or however you are supposed to spell the Korean words for mom and dad) and said "that is my family". I haven't told her but it's almost like she knows. At breakfast she said "I miss mommy. is mommy still in the hospital?" Stunned, I luckily was able to change the subject. I don't lie to her. I will tell her tonight I think, and yes I have help. She had just gone to sleep when the Dr. called Sun night and Russel came over and spent the night and next day with her. I mention this here because I know it is on everyone's minds. Wish me luck. I know I have your support. -Willem
Willem - This is Jonathan Smith's brother Sam. I wish there was something I could do or say to help ease your load. You have our deepest condolences and you and your family are in our thoughts and prayers. I am so, so sorry for your loss.
Posted by: Sam Smith | 11/06/2009 at 12:49 PM
Willem - Roger and I have been talking about the first time we met your winsome wife at the family reunion and how we fell instantly in love with her! What an incredibly beautiful young woman, her shining personality, her unforgettable story about proposing, her joy at teasing you and keeping you a little off guard with what was coming next! What a shining star who will never be forgotten. Our hearts ache for you and we wish we could take your pain and carry it for you. You are loved and admired for the wonderful husband and father and person that you are. We love you dear cousin, Donna and Roger Cochran
Posted by: Donna Cochran | 11/07/2009 at 05:28 AM
Willem, I'm sorry for your loss. My thoughts have been with you and your family.
Deepest sympathies,
Lonnie.
Posted by: Lonnie Johnston | 11/07/2009 at 10:06 AM