If prayer worked, we wouldn’t need hospitals, medical schools, pharmaceuticals, or medical technology. Please be sensitive to the fact that we are not believers, and that suggesting Kirsten is going to magically be healed soon and go home isn’t helpful. Thank you.
I am home. Kirsten is on a ventilator and is sedated. Her arms are tied down so she does not remove the tubes that are providing the life-giving oxygen she requires. I have no idea what happens next. I will be back at the hospital at 0700.
Good night. Thank you all so much for reading these posts and leaving nice comments. If you have questions about her status, please leave those, too, and I’ll try to find the answers. Please, no armchair diagnoses. To those of you inclined to pray, thank you for respecting my wishes and not adding any stress to me. My emotion reservoir is full and occasionally runneth over. To those of you who continue to use prayer as a club with which to remind me of my awfulness…fuck you.
Surgery didn’t go as well as we’d hoped. However, it could have been much worse. Dr. Florman wasn’t able to reduce (re-align) the vertebra due to the fragility of both Kirsten and her bones, but he was able to remove the C5 vertebrae, add the cadaver spacer, and screw in the titanium plate to fuse together vertebra C4 and C6. Kirsten’s bones are weak and soft, so the screws didn’t go in as well as we’d hoped. Dr. Florman is optimistic that the screws will heal well given Kirsten’s age, but she will forever have soft, brittle bones as a result of the Cushings Syndrome. So we didn’t accomplish all of the goals of surgery. Space was opened up which should relieve the pressure on the C5 nerve. There is damage, though, which has resulted in loss of strength to her right arm, mostly near the shoulder area. This will improve as she uses her arm and the muscles still triggered by undamaged nerves grow stronger to compensate for the damaged nerves, which will die.
When Kirsten came out of surgery and was back in her room she didn’t seem to come out of anesthesia well. She was in and out of sleep, required oxygen, and had a very low respiratory and heart rates. They tried for a very long time to open her airway and try medical interventions. Nothing worked. When sufficient time had passed to concern the medical team, they began to access the causes and find remedies. A chest x-ray was taken in her SCU room which showed a build-up of fluid in her lungs.
I am not allowed in the room at this point. When I last looked there was a SCU team connecting her to a ventilator. I walked away. Her doctor talked to me for a long time about what they are doing and what they will try to do, but any kind of expectation is speculation and wishful thinking. We just don’t know how Kirsten will respond to the treatments. She has many serious conditions, and her frailness complicates her response to each of them.
I apologize for not being more responsive here and in the other places people are commenting, asking to help, and wishing us well. I simply don’t have the time or energy. I hope you understand and will forgive me.
It’s been nice to have Soni here. I’m glad she and Kirsten got to spend some time together. She is now home with the girls.
Kirsten went into surgery at around 1245. Dr. Florman expects his portion to take a little more than an hour, but that total time in surgery will be more than two hours.
I had a nice lunch with Soni in the cafeteria. Afterwards I went up to R9 to talk to Kirsten’s boss. They really like her there.
Kirsten was given a bit of narcotics for pain. She’s resting, but is now being given oxygen to counteract shallow breathing.
Soni is sitting in the room. Kirsten was surprised at how quickly she got here, and is enjoying her company very much.
A “companion” or “sitter” is also in the room to insure Kirsten doesn’t move her head. There is significant risk of additional injury to her neck.
I participated in the team meeting this morning. I think my presence helps. I asked a lot of questions, challenged their recommendations, and expressed my concerns.
The anesthesiologist came in for his evaluation and had me sign the consent form for surgery this afternoon.
Kirsten has been awake and alert and cogent, a nice change from yesterday.
The operation this afternoon is scheduled for one hour, which seems very short. I’ll discuss this with Dr Florman when he comes in for his pre-op consult in a little bit.
I got home last night and had a nice talk with the girls before collapsing onto my bed, still fully clothed including shoes and baseball cap, for a short nap. At 0100 this morning the alarm on my iPhone began to blare, awaking me with a start. I stumbled downstairs, got in my car, and drove to the Concord Coach Lines terminal in Portland to pick up Kirsten’s mother, Soni.
On the way back to Saco we were pulled over by a statey for having a burned-out plate light. Eff! And, “Really?”
I couldn’t sleep well. There’s just too much going through my mind. However, I think I’ve transitioned from shock, worry, and anger to a more managerial disposition. I feel far less emotional today then I have been recently, which is nice. There have been a few times when, during consults with physicians, it has been apparent that either the chart hasn’t been read or the doctors aren’t talking to each other. I feel it is my primary responsibility, besides caring for my three wonderful daughters, to insure Kirsten is getting the best possible care.
At 6:45 my iPhone alarm again blared me from my rest. I was relieved to not have any frantic voicemails from doctors.
Kirsten looks great. Her head is still in traction and she has a “sitter” to make sure she remains very still. The neurosurgical assistant said they might do the laparoscopic biopsy of her liver during the neck surgery since she’ll be under general anesthesia. I spoke with a surgical oncologist about her liver tumor. He thinks it is most likely benign, based only on the preliminary imaging. He said in the seven years he has been here, he’s never seen anybody in traction for a neck injury and that he doesn’t want to do a combined surgical procedure due to the high risk of paralysis. So, they’ll just operate on the neck this afternoon, and do the biopsy in the next week or so.
I continue to demand communication from the team and make sure they are talking to each other and reading the chart. I pepper them with questions and point out inconsistencies or areas I think may be looked at differently. Each specialist focuses on their area of expertise, but Kirsten has multiple serious problems that must be addressed in a coordinated manner. The team agrees, as do I, that for now the neck fracture is the primary and most immediate problem.
Kirsten ate two meals on Monday afternoon and evening because radiology didn’t know which imaging technique they would use to guide the liver biopsy needle that never happened. She didn’t eat yesterday because of the seizure and resulting fall. And she won’t eat today because of the general anesthesia required for her neck surgery this afternoon. She is on a sodium chloride drip, but is not being given any nutrition. She says she is not hungry. I continue to worry about her deteriorating body.
Kate brought me a large dirty chai this morning, as she has every day. She is a gem of a friend, and I love her.
The girls will spend most of the day at Katie’s house, which should be good for them all. Soni will hopefully arrive at the hospital soon so she can spend some time with Kirsten before she goes in for surgery.
I have been asked several times by doctors and nurses if I work in the medical field. They seem to be impressed with my comprehension and memory. I’m learning a lot every day, that’s for sure!