Cindy brought the girls up to the hospital and I had a long and difficult talk with them. They are incredibly strong and taking this all so very well. On the outside. It’s impossible to know what’s going on in their minds. I wish I could hold them in my arms and tell them everything is going to be okay.
Kirsten’s neurosurgeon, Dr. Florman, came in and gave me a briefing just before the girls arrived. The CT scan revealed more than whether the crushed C5 is recent or old; the problems with Kirsten’s neck are severe. When she fractured her neck this morning during her seizure it crushed her C5 vertabrae and knocked it out of alignment. Additionally, a bone fragment chipped off. This serious of an injury usually results in paralysis. We are very lucky (Ha! See, I can be positive.) She has almost completely lost the ability to raise her right arm. This is due to the C5 vertebrae smashing the nerve that runs to her right arm.
Immediately after our consult, Dr. Florman began to put Kirsten into traction to pull her neck apart, hoping that would solve the alignment issue. Unfortunately, Kirsten’s head is too small for the device, and she is so light that adding weights just pulled her up in the bed. He is hopeful they’ll be able to resolve the issue during tomorrow’s surgery. She will be in traction all night.
Dr. Florman is hopeful, but not optimistic, that she will regain full ability of her right arm.
Kirsten is very confused and spouting nonsense, which is VERY unsettling. The doctors and nurses say it is normal for someone with the number of complex neurological and endoctrine issues she has to be a bit crazy and that that will go away.
Tomorrow they will make an incision in Kirsten’s neck to remove the bone fragment. She will also undergo surgery to remove the C5 vertebrae and replace it with a cadaver vertebrae and a titanium plate to fuse vertebra C4 and C6. Unfortunately, the very serious neck fracture is only one of several other serious maladies.
Also, I gave up my Manager of Logistics position for The Great State of Maine Air Show today. Bummer.
Kirsten is sleeping and peaceful.
I spoke to the endocrinologist who suggested possibly doing a PET scan. She also would like me to talk to a surgeon about removing Kirsten’s adrenal glands. We haven’t decided to do that yet, but they want to have the discussions now so they’ll be ready if and when. The drug Kirsten has been given to lower ACTH isn’t working, and she’s being administered the maximum dose. So, now, they’re ordering her some metyrapone. It’s a drug that is no longer manufactured and available at pharmacies, but can be ordered direct from the pharmaceutical manufacturer for special cases. That will be here Thursday.
There is a risk that lowering the cortisol (the culprit in all the current problems) will trigger growth of the pituitary tumor. That would be very bad, as there can be no surgery or radiation to counter that. They think that risk is minimized because the pituitary has been radiated in the past.
Dr. Hess said they will try to do a laparoscopic biopsy of her liver tumor soon. He is fairly confident that is the source of the ACTH driver. He said that since the PET scan is an out-patient diagnostic procedure, they have no plans to do it now. It doesn’t give a higher resolution than what they have already.
Dr. Florman, who did Kirsten’s last craniotomy, will be here in the room soon to discuss with me what they’ve found with her neck and what they plan to do with respect to that.
Cindy is bringing the girls up for a visit. Kirsten is excited to see them.
Kirsten’s nurse, Jen, is amazing!
Jen, Kirsten’s nurse, just wheeled her back from radiology. She looks good, but they weren’t able to do the liver biopsy due to its difficult location under the ribs. I suspect they’ll try an endoscopic procedure, but I haven’t spoken to anybody about that (just mentioned it to Jen, who agreed).
Cindy, our friend and neighbor, returned to Maine (from New Hampshire) to be with the girls. It’s nice to know they’re with someone. Although they’re fine alone, I don’t really think it’s best for them to be processing everything without someone there to comfort them if necessary.
Kirsten’s brother-in-law Gary called me and offered to purchase the girls’ school supplies. The specific offer was nice, as it didn’t require me to think or plan. We continue to appreciate the outpouring of love, kindness, and generosity of our friends and family.
My friend Jessica, who coaches soccer, is going to get Hayley a ball and drive down to play with her. She will show her techniques and explain the rules before Hayley starts her soccer season in a couple weeks. It’s a huge relief to know my friends will step up and be there to do things for the girls I cannot do myself.
Continuing, Kristy, Hayley’s Girl Scouts leader, is going to pick her up tomorrow afternoon to take her to their final meeting. I was worried Hayley wouldn’t be able to make it.
If you’ve offered to help and I haven’t gotten back to you, don’t feel bad. I probably forgot or I don’t need anything right now. Please understand that I appreciate each offer more than you know.
Kirsten is going to have the liver biopsy as soon as the radiologist for that shows up. The CT scan of her neck is complete. No word from the neurosurgeon. I’m going to try to find a turkey sandwich on wheat. :)
If there are questions you have that I’m not addressing in these posts, please ask in the comments. Other people might have the same question. There is a lot I’m not writing, mostly because it’s highly technical or overly worrying. I’ll continue to do the best I can.
Please do not call unless you are my or Kirsten’s parents. I just don’t have time. Send me a text (207) 423-7145 or comment here and I’ll communicate as I’m able.
Kirsten was just wheeled down for her CT scan (and possibly the liver biopsy). She is awake and smiling.
I just spoke with Skye (12). The girls cleaned the apartment then walked to the store to turn in recyclables and buy milk. They used their own money. They also made a list of things we need. Then crossed milk off of it. All without being asked (except to tidy the apartment, which I asked them to do last night).
I’m more proud of them than I have the ability to express. They are happy, taking care of themselves, and working together. I can’t even imagine how I would be able to endure this if they weren’t so mature, happy, strong, and good.
Kate brought me a large dirty chai from Bard Coffee, which she has every morning since this past nightmare started. She also brought one of Suzanne’s blueberry crumble bars and a bagel with cream cheese. She stayed with me for several hours. Angela also visited and let me bitch and worry out loud. They both made me laugh, which is very much needed in (very) small doses.
Kirsten’s team is wonderful. They communicate well, answer my myriad questions, and address each concern I have. She is awake, alert, and smiling. The PIC team inserted the catheter and will soon do the x-ray to verify correct placement. The PIC catheter can be in longer, and provides the doctors and nurses a way to administer drugs and draw blood. The IVs they’ve been using to give potassium are in narrow veins that may become damaged due to the nature of the chemicals.
The neurosurgeon showed me the results of the x-ray of her neck, which shows a compressed vertebrae they think she sustained in the fall during her seizure. They’re going to take a CT scan to get a better picture and determine conclusively whether or not the injury is new or old. This matters because treatment duration is dependent on time of injury. If the injury is old the neck brace will be worn for comfort. If it is new (from the fall last night), the neck brace will remain in place throughout healing. Kirsten reports pain in her neck and back.
They aren’t sure whether or not she was in bed or walking to the bathroom when she had the seizure, as there weren’t any witnesses, but they’re reasonably confident that it was caused by a spike in high blood pressure, which was itself caused by an electrolyte imbalance.
Kirsten’s mother is flying in today to be with the girls and help around the house. Several of you have offered to stay with the girls, and I appreciate those offers more than you could know.
We have had meals prepared for us and many more offered. In fact, friends have begun coordinating meals for us, which is more touching and appreciated than I can express. I love you all so very much. However, we do not need more meals at this time. Our refrigerator has a finite volume, and I would feel terrible if meals prepared with lots of love and fresh ingredients had to go to waste. I will not be at home very much, and Kirsten’s mother will be able to let me know what we need, and provide many of those needs.
I appreciate all the comments, well-wishes, meals, visits, etc. However, it would really help me out if people would stop playing armchair doctor. Her team of doctors and nurses give me no reason to think they are not competent and doing everything in their power to make her well.
Also, this is very serious. She isn’t going to be home soon. Positivity is good, obviously, but there are no miracles. Please keep things rational.
Thank you for your continued patience with me.
Kirsten has been moved to the Special Care Unit (SCU), where a team of doctors and nurses are doing all they can.
I was in a waiting room (per instruction). The other visitors reeked of cigarettes and complained there wasn’t a television, so I’m sitting in the hallway. Hungry. Tired. Scared.
I woke up this morning to a voicemail from a doctor who is caring for Kirsten at the hospital. She had a seizure around 0200, which resulted in a fall, which caused a neck fracture. Then, a few hours later, she had a second seizure. Doctors aren’t sure what is causing the seizures, but suspect it’s high blood pressure and low potassium.
She’s being moved to a Special Care Unit (SCU) room.
She has on a neck brace and is mostly out of it. She tells me she loves me and occasionally squeezes my hand. She is frail, weak, grossly tiny, and in tremendous pain.
Please do not visit.