Kirsten Is Sick – August 22, 2012

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.

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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.

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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.

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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.

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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.

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Drips
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!

35 Comment

  1. Brent, I am NOT praying for you and Kristen. :) But I have been thinking about you both constantly. Sending positive vibes your way..?? I am impressed with how well you are advocating for Kristen. Your commitment and love for her is obvious. Here’s hoping for a great day of healing and good news. You need rest. Love you guys.
    Lisa

    1. You can pray. I just don’t need to be told about it as if to tell me this would all be better if I would only pray. :) Thank you so much. I’m headed to bed just as soon as I do a final run through these blog comments, etc.

  2. Kris Lethin says: Reply

    Reading every word of every post. Continuously on the edge of my seat.

  3. You are performing many important roles and doing it well; be good to yourself too.

    1. Thanks, man. I’m doing the best I can.

  4. You are amazingly strong through all of this. i couldn’t ask for better.love and support that you are giving her. We love you

    1. Thank you, Soni. You are a pillar of strength yourself. It’s been so nice having you here to talk to. I know it means a great deal to Kirsten, too.

  5. Janice ORourke says: Reply

    Brent
    Kirsten is really lucky to have such a dedicated person in her life; advocating for her health and care the way you are and have been. That is love my friend… In action… And deeply inspiring to me. Big hug Janice

    1. Thank you, Janice. I love Kirsten more than I can possibly express in words. She has been the love of my life for more than twenty years. I wish I could make this all go away.

  6. Haven’t heard anything for a while. How did the surgery go? Has Kirsten gotten any food today?

    Thinking of you and sending love

    1. Sometimes things are just too busy. I know it’s important and that there are a lot of people following this ordeal, but I am finite. I hope everybody can forgive my lack of frequency and understand this isn’t my primary concern.

      1. Absolutely!

        Just know I’m here if you need something when all of Maine is sleeping.

        Much love! Colette

  7. Ryan Dlugosz says: Reply

    Brent – again, our best to you and family. Good on you for being a strong, informed patient advocate – that is the most important thing you can do to insure quality care.

    Drop me a line if there’s anything I can do to help.

    -Ryan

    1. Thanks, Ryan. I actually do enjoy the advocacy part. I just wish the stakes weren’t so damn high.

  8. Brent, our hearts are breaking for Kirsten and you, the girls, and Soni. Quite frankly, it is extremely difficult to grasp what is happening because of the suddeness and severity of all this but as long as there is even a little hope, that is what everyone is hanging onto just because we must.

    I am so glad the girls were able to come over today and they are absolutely precious. I see so much of Kirsten in each of their faces, especially the eyes. I met Soni, too, and can see where Kirsten gets her outer and inner beauty.

    1. Thank you, Cheryl. And thank you for having the girls over today.

  9. Brent,

    Our thoughts are with you and Kirsten. I wish I had more comforting words, and a better channel than the comments section, but I wanted you to know.

    1. Thank you, Rich. It means a lot.

  10. Brent,

    Nothing I write will make any of this easier for you. Regardless, please know that I’m thinking of you and Kirsten. As others have mentioned, your dedication and advocacy to/for Kirsten is inspiring and, no doubt, critical.

    Please don’t hesitate to ask if there’s anything I can do that would be helpful.

    Big love to both of you. rg

    1. Thank you so very much.

  11. Kris Lethin says: Reply

    Brent,

    I am so proud of your vigilance and care for Kirsten. Hearing your story is both terrifying and hugely encouraging. Keep up the great work buddy. Cross continental hugs to all of you and your family.

    Love always,

    Kris

  12. Kris Lethin says: Reply

    Totally.

  13. Thinking about you Brent. Been following your nightmare and wish there was something I could do to help. You are a good man and your girls are lucky to have you =) All the best from Hawaii.

    1. Thank you, Morgan. Hey, I went SUPing. I was going to draft a blog post, but, then, you know…

      Brent SUPing

      I had SO MUCH FUN!

      1. yayayayay!!

        Stoked you had fun and looking good on that board! When this is all over, you have to bring the entire family to Hawaii and I will set you guys up. I have so many places that would stoke Skye out for sure.

        1. Woot! I/We would love that. I’ve been to Hawaii several times, but neither Kirsten nor the girls have. They should experience its awesome, too, I think. I do plan to buy my own paddleboard when time and money permits. Probably next spring.

  14. Christina Mennear says: Reply

    Brent; my heart just aches for all of you. I also have read every post, and have just been amazed. I am so sorry you and your sweet family are enduring such shittiness. I HATE it. It seems so unfair and totally uncalled for.
    I admire you, and I am inspired by your ability to keep this blog as you are. I sense the love you have in your words, and in the actions you are taking. I also love that there’s a good friend bringing you a dirty chai each morning. That is so sweet, and just totally cool.
    It’s times like these that I am sad I moved away from Massachusetts. My family is there too, and obviously some great friends even live in Maine! I would love to be there to help watch the girls, lend a hand in any way I could. You are a total ROCK. I’m sorry again that you are dealing with all of this. Keep your chin up. Do take care of you too. Lots of love to you! xo

    1. Thank you, Christina. Kate has been an incredible and true friend. Those chai lattes do energize me, and serve as my primary source of nutrition. Chin is up, even if my eyes are watery. :)

  15. Medicine and science are awesome things and I hope beyond all hope the doctors find a solution and effective treatment.

    1. Medicine and science are FUCKING rad!!! There will be a blog post or two about the awesomeness of science. Someday. :)

  16. Mike Desjardins says: Reply

    Thinking of you and Kirsten. Wish I had something more to say or could do more to help. It sounds like you’re doing a great job as an advocate, friend, and dad. Best wishes to you and your family.

    1. Words aren’t enough, right? Thanks, buddy.

  17. The English language seems so inadequate to express the heartbreak I feel, the gratitude I have that Kirsten has such an amazing advocate in you, and my thankfulness for your blog posts. My thoughts are with you and Kirsten constantly. All our love.

    1. Thank you, Jodi. :)

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