Posted by: Kate | March 24, 2010

What I Know

Latest status:
— Short-term memory is damaged, no idea how permanently. I can still learn things, but I also tend to nod off or just drift in the middle of a sentence, especially if I’m tired or distracted. This means I’m bad with things like conversation, typing or spoken; it takes me a long time with a lot of misspeaking.

— I have a nasty case of thrush due to being on the ventilator for a week and antibiotics, etc. Which means I can’t eat chocolate. (I can, however, save it. Won’t you think of the chocolate??)

— I’m down to one central line, meaning one open IV site where they inject medications as needed – but most of my meds are oral now, so that may change soon… I would be just fine with them getting rid of all IV lines if we don’t need them, though my GAWD is it more convenient and less painful than getting daily new sticks.

— I have had a Total Abdominal Hysterectomy, at age 32. No ovaries, no cervix, no uterus, no tubes. This is the kind of procedure often reserved for cancer patients, but in my case it’s because the bacteria that was attacking my body was so intense that it was the only way they felt they could confidently get ahead of it. I am terrified about the future of my sex life, among other things – I was just hitting a new and interesting stride with Willem. We’ll have to get creative, I guess.

— On the flip side, this illness has already created moments of intense and genuine intimacy with family and friends. The ICU staff joked about the number of sisters I had (since you need to be first-degree relative to visit) and how precocious my mother must have been. Jenny helped wash my hair, twice. Willem gave me a sponge bath, and will be giving me a shower tomorrow. My sisters helped with toenail polish, a particularly upsetting task given their uncertain future (the toes, not the girls; basically between extreme edema, heavy medication and lack of movement, it is very common for people in comas to lose extremities… being in a coma is not the quiet, sleepy sort of event you see on soap operas). Many of my friends have seen my staples and wounds. Carolyn has come and just sit with me while I struggled – and failed – to stay awake through the worst of the sedation. L. has watched me shower and has brushed my hair. Jenny has watched me break down about my ability to be me – as a mother, a person, a self – repeatedly. My uncle, whom I truly don’t know all that well, has sent a number of encouraging photos and flowers and notes. People I barely know from online are taking the time to write comments or emails or call me, just to be encouraging. And so on…. in short, I have shown people my absolute worst, and they are replying with their best.

— I have learned that it’s true: every little positive gesture does matter, does count. And every absent gesture – the family members who don’t call, the long-term friends who just let it slide – those matter, too.

— I have informed Willem that we WILL be going on a whole-family resort-style or cruise vacation later this summer, once I’m at least minimally able (I can see a reasonable rehab goal of “Able to walk from one cabana to the next to collect new drink, toddler in tow”) – late August, before school but after Gretchen’s wedding. I do not want the year of Isaac’s birth to be characterized by this nightmare as the only other large-scale event. Friends have already started taking up a collection for this; I don’t know details but I do know that for once in my life I will accept whatever help is offered, with an open heart and a huge smile.

— I have learned that I can sob on the inside and smile on the outside without hardly breaking a sweat… Willem brought all three kids to visit me today, having gotten an all-clear from the Infectious Disease department…I was terrified that I might expose them to God-knows-what, but I needed my babies. Needed. They needed me. We had each other for a little while. We’ll have each other for longer, again, soon. I touched my children’s faces, and kissed their little cheeks, and smelled their hair.

— My tolerance for acute pain is higher than I’d have guessed, but nowhere near high enough to get through this nonsense by myself. I have something called a VAC in place of traditional dressings (not for the faint-hearted, don’t click if you’re easily squicked out, or even not-very-easily so). Apparently it’s at the cutting edge of medical science and I should be proud and impressed. OK, fine. I’m also still in pain from last night’s “changing of the dressing” and revving up for tomorrow’s repeat performance. That shit hurts, medical miracle or not. I’m told I can expect about 10 more dressing changes and then it will be switched to a conventional set of gauze pads. I have learned that my husband, at least, is willing to hold both my hands and listen to me cry while they do what they need to do; other friends have offered if he is unavailable for a shift. I refuse to act stoic, I will take what help and hand-holding I can get.

— Sitting in a chair is exhausting. So is lying in a bed.

— When you are originally being Medflighted into Boston and begun on a course of 6+ surgeries, you and your family will be told to expect three months in the hospital. When you awaken after a week with nothing more than healing VAC wounds and a low-grade fever, the doctors will change their estimates repeatedly, to the point that you need to ask them to slow it down because you cannot go home and be responsible for children under certain conditions. At the moment, the plan seems to be, instead of me remaining at MGH from March 9 until mid-June and then “we’ll see”, to remain here from 3/9 to 3/26 and then move to rehab somewhere near home, for “a week or two.” I could very well be home – comfortably, not because I’m pushing it (’cause I’m not) by Emily’s birthday, April 17. How’s that for a present?

— Typing involves both short-term memory and executive functioning skills, and both of mine are damaged right now. I need to stop. It has taken three hours to make this post. Next time I’ll aim for shorter and funnier, because there are funny stories in all of this. And if you don’t figure out how to laugh sometimes, you’ll cry ’til you break.

I have not broken yet. And by now I’m certain that, between the medical staff and my loved ones, I would not be allowed to if I wanted to try.

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Responses

  1. No chance you could be broken.

    You sound stronger every day– you’re amazing.

  2. Kate, a couple of things:

    The brain fog is a combination of the surgical menopause AND the sedation/anesthesia…you definitely need to be kinder to yourself. Not to mention the hormonal shifts after childbirth!

    In short, the fact that your mind has come back to this degree, given all that, tells me that it’s all there, just drowsy and hormone-addled.

    That being said, please tell me that you’re getting estrogen-replacement? There should be NO reason not to and may even help heal.

    Hugging your babies, ALL of them — THAT’s when true healing really starts! Gentle hugs from California.

    BTW, about phone calls? You’re a MUCH better woman than I was…I struggled to keep up with conversations and found them exhausting. Let your world in a little at time, it’s a little easier that way, for me at least…

  3. I’m happy to see you posting again Miss Kate. I wish you the speediest recovery within reason, and hope that you’ll be home with the family before you know it.

  4. Big big big hugs and prayers Kate! Keeping you in my thoughts and prayers!

  5. Cyber hugs from Switzerland, it’s lovely to hear from you.

  6. Nah I had a radical hysterectomy. Look on the bright side, no more crimson wave! The downside . . instant menopause! Fortunately, it didn’t bother me other than a few hot flushes now and then and no medical intervention since. Hopefully you’ll be as lucky. Still 32 is young. And honey, it shouldn’t affect your sex life one little bit! Love is love.

    I don’t think you’ll lose your extremities. I had a friend who was in an induced coma for five weeks after an horrific car accident. She has a scar on her throat from a trachiotomy and a nice slice out of her skull but she’s ALIVE, and vibrant and happy. Make sure you get daily physio on your feet.

    We’re here for you at your worst and your best, soak it up. Keep positive.

  7. Two of my three SILs had radicals after their babies due to complications. Being of the mormon persuasion they were much younger than 32 when it happened.
    I’m so glad you got to see your kiddos. I seriously believe once you get sprung from there you will heal 10 times faster.

  8. Perhaps the post took longer to write, but I never would have known. I don’t want, in any way, to minimize the situation, but damn, girl…you’ve gone from “we’ve never seen anyone so ill survive” to “you’re going home two months ahead of schedule.” Cut yourself some slack! *mwah*

  9. It must have wonderful seeing your kids. I have tears in my eyes just thinking about it.

    Keep your head up and I’ll keep sending positive energy your way. You have a long road ahead Kate, but look who’s cheering you on, and what’s waiting for you at the finish line!

  10. You’ve been awake for less than a week from the most horrific physical trauma imaginable. Your cognitive and executive function will return. You have time, thank God, and time is the greatest physician.

    So much love to you. The picture of Isaac gazing at you as you fed him nearly did me in. The circumstances suck, but the essentials are rock solid.

  11. I love the idea of the cruise/vacation. Please let me know if they have set it up on Paypal so those of us waaaaaaaay down here can contribute waaaaaaaaaaay up there.

    Hearing from you is the best part of this. I think I speak for everyone when I say that none of us wanted to face a day without a Kate post, or without a Kate.

    Hugs & love to a family that is beyond amazing.

  12. I love you Kate. and am in awe of your strength and grace at a time like this, especially having now experienced just “regular” childbirth myself. Whatever I can do to support, think of, help you and the family, I’ll do in a heartbeat.

  13. No words, just ((((hugs)))).

  14. God Bless you and your family. I have never posted below, so you have no clue who I am other than a concerned soul.

    Many prayers…

  15. Boy, my cognitive abilities were in rough shape jst after giving birth, I can’t imagine what you’re going through. So glad you got to see your babies.

  16. Kate, it’s amazing how beautiful your writing still is. You may feel foggy, but you don’t sound it. I am just so relieved to hear…you. I wish I could visit, but as another one of your friend mentioned if you set up a Paypal or give me an address I’d love to contribute to the cruise fund. What a great idea – you need something to look forward to. I’m glad you’re surrounded by so much love because it will get you through. Keep rocking, Kate. xoxo

  17. You are one of the most amazing people I know.

    Take care of you!

    Love to you and the family….

  18. You really don’t seem foggy at all, and although it took a long time to write this, which must have been frustrating as hell, you come across much more coherant than most people on a good day. It’s all there…give yourself time to heal!

    I think tragedy and illness bring out the best and worst in people, and thankfully you seem to be surrounded by the best of the best. You are constantly being thought of around these parts as well and we only wish we lived closer so that our well wishes could be delivered in person. We all look forward to the day when we see pictures of you surrounded by your babies at home.

  19. I’ve been following you through all this, and didn’t post because I didn’t know what to say, although you’ve been in my thoughts the whole time.

    I still don’t know what to say, except that you are an incredible woman. Have a very large hug from across the other side of the pond.

  20. You got to touch your babies, yeah! You are strong and amazing and I truly believe you will heal so much more than you can imagine at this moment. Love and time are on your side.

    Hugs,
    Vanessa

  21. Still sending you prayers and well wishes. Honey, don’t worry about the short term crap. Seriously I went through some form of that after my babies. I still do and my daughter is one. I space out, forget what I was saying, and as a testimate to my hubby, sometimes he was listening and can prompt me and sometimes he can’t. You “sound” good via words. Stay strong. We all need you for inspiration!

  22. Kate – you don’t know me (I am Lisa S. stepmom) but I’ve been following your story – you have all my heartfelt prayers and wishes for recovery.

    Your story captivated me and I am awed and amazed by your strength.

    Linda

  23. I don’t know why I’d be crying *now*, now that you’re on the way back. I don’t get the human mind, I really don’t.

    So, so, SO glad you are on the way back. And that Emily will get such a great present.

  24. Still thinking and praying for you Kate. I wish I was near Boston so I could help you guys out. I think a vacation to mark this year is a superb idea.

  25. I have such joy at the fact that you’re back to the conscious world and online – and yet such horror at everything you’re still having to deal with. I wish I were closer. Geography sucks sometimes. Hugs and love, every single day.

  26. Not broken. You’ll find a way to be even stronger, I suspect (you already are, so far as I can tell).

    And a girlie comment…HOW can you look so pretty after going through so much?! I’m so glad you got to hold your babies.

    (lindydiva on Knitty)

  27. Kate you are in my thoughts & heart everyday. I’m so happy to read your words. Like all the other girls I wish we all lived closer to lend a helping hand. Sending my love, Shannon

  28. Thank you for fighting and having courage.
    I appreciate you so much!
    (seven on knitty)

  29. Hugs hugs hugs!!! Remember I went through the vac when I had my hysterectomy, so if you think of any crazy question just ask. The changing of the dressing really is the worse though! I almost slapped my home health nurse twice, before begging to just been seen at the dr’s office to have it done. Ask them about silverdine (I think thats right) especailly as you get closer to loosing it, its silver paper that they can put in with the sponge that will help with healing, and if I remember right helps keep the bad bugs away. Sent you a package (with two packages inside) but it sounds like you will have to hoard part of it until you are feeling better. 😦 I tried. Sending lots of hugs and kisses and love, wishing I could come and hold your hand too.

  30. Kate as always you are in my thoughts. I am sending you all the cyber strength I can muster up. Love Krista.

  31. UGH!! After spending the day changing the dressings on wound vac patients I feel for you. I always want to cry with them seeing the pain on their faces, I hope they are medicating you 30 minutes prior to the dressing change-if not DEMAND IT!
    After all that you have been through give your memory time, you’ll be surprised how much you gain back. Even little Derek seemed to go through much of that but after time his memory became so crisp-sometimes scary good.
    Sending lots of love and hugs your way!

  32. Kate they cannot break you. I am very sorry and actually crying because of what has happened and the fact it could have been prevented.

    It helps me to know you have Willem the Incradible, your mom, sisters, sister/friends to support you. I detest being so far way considering I am unemployed. It is frustrating as I want to help. Prayers going out to you and yours 24/7.

    I love you Kate.


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