Posted by: Kate | April 2, 2010

About a Week

One of the things I’m especially tired of is this sense I have that I continue to live so close to death.  Not because I’m near death anymore; the reason I’m still in a Long Term Acute Care Facility (which is apparently vastly different from rehab and they will let you know immediately should you refer to it incorrectly) is because some of my blood levels and kidney function tests and so on were just wonky enough to make hospital-level care necessary even when an actual hospital wasn’t, quite.

No, I’m apparently out of the woods, though until those last few blood levels and kidney function tests get themselves where they need to be, I’m being kept right where I am.  I think.  My doctor grew up in Venezuela and got his MD in Canada, so there are definitely times when I miss big chunks of his words, but I think I understood what I needed to understand tonight.  The bottom line of which is, I will stay put long enough to rub some labs a few times, but it would not be unreasonable to think about being home in about a week.

About a week.

Let’s contemplate this.  When I was first in the coma, somewhere in the midst of six surgeries, deliberately incoherent and insensate, my husband and parents were told not to be surprised if I remained in the ICU at Mass General for three months.  Then I might move to a regular surgical floor, and maybe eventually rehab, and they wouldn’t begin to make the slightest guesses about long-term impairment.

Now, today, it is April 1st.  (And, by the way, should you ever be interested in avoiding all April Fool’s idiocy, go hang out in the hospital for the day.  Nobody gets goofy here, a fact for which I am deeply grateful.)  My son was born on March 5th, and I was discharged on March 8th; we’ll consider that a “normal” inpatient stay, meaning not part of all the rest of this nonsense, even though it’s kind of the domino that kicked the rest of it into motion.  But my real excitement began on March 8th in the afternoon, and grew from there.  It was around March 11th that the “three month” estimate was first bandied about, and here we are… April 1st… 21 days later, and we’re talking about sending me home.  That is its own special brand of insanity right there.

Today, I know that it’s not quite time for me to be home.  I know that there are some alterations that need to take place to the apartment itself (the front steps need a railing and thick treads), and to my own wound VAC machinery (there is a large, heavy version, which I currently lug around on a walker, and a smaller, still-heavy-but-not-as-much version that has a shoulder strap and is thus considered portable; they’re ordering this for me but nothing happens fast here).  I know that I need to stay here for another few rounds of blood work, and at least two more VAC dressing changes before I go home and let a Visiting Nurse do that to me there instead.  I know I need to demonstrate adequate stability on stairs in order for Physical Therapy to sign off on my departure.  And so on.

But last night?  If I knew someone was going to pull up to the curb and wait for me?  Even if I knew someone was just going to run in for a minute to grab something and left their car running?  I’d’ve bolted, I really think so.

I don’t believe you hit rock bottom once.  I believe it’s the kind of phenomenon whereby you crash down, bounce up, crash harder, bounce lighter… you get the idea.  Last night was a particularly hard crash, and I hurt in ways I didn’t know I could hurt, and I felt completely without the skills – or the company – to ease any aspect of it.  I just ached for what had happened, and I buzzed with anxiety for the VAC dressing change that was scheduled for this morning, and I was desperate to escape, anyway, anywhere.

Today was easier for a number of small reasons.  The VAC change still hurts and will continue to do so, but I have to admit – begrudgingly, because the martyr in me wants to act like it is the worst thing I have ever experienced every time, when the reality is, I was placed under sedation for the first two.  It wasn’t until the third change that I was clinging to the ceiling by my fingernails, sobbing, sweating, and in pain the likes of which I couldn’t label.  A few more changes, and it’s true: each time, the wounds are a little smaller and the change happens a little faster.

The food was just a little better.  A tiny, inconsequential point, perhaps, but I’ve had Donna the Dietitian in my room on a daily basis to gently remind me that I need more protein in my diet to help with wound healing.  I’m being told to aim for 100 grams per day, compared to 50 grams a day for normal people.  Which is, for those of you not familiar with these sorts of things (and that would have included me about 3 days ago) a decidedly holy crap measurement.  A cup of milk is 8 grams.  Carnation Instant Breakfast doubles that.  The protein powder that “doesn’t add taste to your food or beverages” (hah!) adds 6 grams.  An egg is 6… and so on.  Getting to 100 would be a challenge were I having an active sort of day in which I was burning off the calories all day long; lying in bed, or shuffling around the floor at a rate measurable in feet per minute, are not conducive to a hearty appetite.  I do my best, it’s not good enough for Donna, we co-exist.  But there was a tuna salad sandwich today in which they did not include bits of onion and celery and so on, and a roast beef sandwich for dinner: things I will eat.  Did I get to 100 grams?  No!  But I’m content with my efforts.

My toes are looking a little less scary every day, though they did take a leap toward ick tonight – but in a good way.  The eight days in a coma, with medications and severe edema and complete lack of movement, did not do good things for the toes, and supposition has run rampant about whether I will keep them all.  A few days ago, I noticed – sorry, TMI – that on some of the worst spots, where the skin was already literally black and blue (you think you’ve been black and blue, with bruises… and then you see toes that are actually dark black and bright blue, and you know better) the skin was dry and cracked, and in those cracked spots, it was a little weepy and oozy.  And in my world, skin that looks like that (I’d never had the precise colors, but the dried-out-and-oozing had happened with blisters and bug bites) gets soaked in Epsom Salts.  Anything in a hospital takes a few days to get approved, but we did get an OK, and started daily soaks on Tuesday.  Today – seriously, TMI! – two big pieces of skin sloughed off the worst toe, all by themselves.  I didn’t have the heart to leave them in the water, like creepy little bay leaves or something, so I fished them out and threw them away, and now that toe and its neighbors are carefully bandaged because air-drying doesn’t seem like the greatest idea.  If they’re so worried about potential germs here that they won’t allow my baby to enter the building, then it follows that my toes probably ought not to be open to the air when they have open areas.

You get the idea.  Little stuff, but substantial enough that I’m avoiding the weeping and the rage for the moment.

And there are big things.  And the big stuff always needs fewer words than the little, have you noticed?

First, Willem spent the evening here.  We talked quite a lot, and because I have branched to effectively no restrictions on movement (I only have to use the walker to carry the wound VAC, otherwise would be allowed to just walk places), we set up in a little lounge area away from my noisy neighbor.  I miss my husband like crazy, just the chatting that you do as well as the more intense reviewing of the big stuff, and we had time to do that.  All over a game of Scrabble… which I won, soundly.

Second, maybe about a week till I go home.  Really.  Eek.

Third, we’re making plans, with help from both the Physical Therapy staff and the nursing staff.  The weather looks like it will cooperate.  I should be able to go outside on Saturday, for an hour or two… and spend that time with my family, including little Isaac.

Could life be better?  You’re damn right it could, in dozens of ways.  But it’s feeling a little more bearable tonight.

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Responses

  1. Love you Kate. And love to your family. I am constantly amazed at your strength.

  2. I am so happy that the light at the end of this tunnel is getting bigger, and that it isn’t a damn train!

    You’re the shizz, Kate. What you’re doing right now sounds very hard and scary and you’re just staring each new obstacle down like a master. But then, you have some pretty awesome things waiting on the other side of all this, so I see why (and how) you can.

    I’ll be here sending you hope and love and waiting for that triumphant “I’m home!” post.

  3. Wow, a week???!!!! Kate, you are amazing.

    I am glad to hear you sounding a little more positive. I couldn’t even respond to yesterday’s post because that anger and rage, that’s something I’ve “rehearsed,” with passion, any time I’ve thought there was a possibility of my being separated from my kid(s) against my will. And that’s just one part of your situation, and I have no idea at all how you can deal with the reality of it. But you are. You are amazing.

    I’m also glad to hear that you will get to see Isaac on Saturday. So so so so glad you will get to see him. The photos Willem posted, the one where you are feeding Isaac his bottle, that has stuck in my head. The way he’s looking at you. He knows who you are, he knows perfectly. You are mom. You will always be mom. You will be reunited, and although this beginning of his life is not anything like you wanted it to be, your bond with him will be there.

    And yay for playing and winning at Scrabble!

  4. Oh my poor sweet lil baboo………HUGS! None of this is TMI for me, hmmmm, wonder why? After folks have been in ICU and intubated, had surgery, etc, dry flaking itchy skin is common. it’s a little like when one’s newborn peels in the first few weeks.

    I don’t know what to think about the staff at your facility(called a skilled nursing facility or SNF~sniff.)

    Being honest and open is different than being scared. They want to make their point but I was taught to communicate with clients in a more positive manner.

    I am so grateful you and Willem have such a fantastic relationship. How’d you get a male who discusses his feelings? Wish I had one.

    If I was not 3000 miles away I’d come be your nurse. I’m all trained for the stuff you’ll need once you get home plus I have an awesome sense of humor! 😛

    All of you are in my thoughts and prayers.

  5. Creepy bay leaf? Can’t. Stop. Laughing. Sorry. I know none of this is the least but funny, But keep having this visual of you sending someone some soup…

    Can’t wait until you can kick my ass at Scrabble again. And I’m a local champ here!

    Can’t wait until you can hold all your babies.

    Can’t wait more until you get home.

  6. “When you’re at the end of your rope, tie a knot and hang on.”

    You did it, m’dear. One funky toed-shuffling step at a time. And isn’t time a funny thing?

    *mwah*

  7. It’s not easy to be positive in your situation, but you just did it!!! I am glad to hear the positives as you see them from your vantage point. Thoughts and prayers are still yours…
    L

  8. You ARE coming through–today’s post is a great sign. Those bottom bounces will never be as bad again as yesterday’s post recorded–because it looked backward to what you’ve lost (anger is good, but living there is not).

    Today’s post looks forward and that makes all the difference.

  9. I love the bounce theory. It makes perfect sense.

    And SO happy that you will be seeing Isaac. My heart hurt for you when you said you had only seen him a couple of times.

  10. oh Kate. You summed it all up in that last sectence. Enjoy your visit with Isaac. I am so happy you get to see him. May your next few bounces be more up than down. Take care and if I were the least bit good at scrabble I would challange you online but frankly I suck at scrabble. I see a light at the end of the tunnel may it be shining brightly for you. one week about time for a countdown.

  11. Wow, my heart hurts a little less today. Hugs!

  12. ❤ This made my day. Thanks for sharing.

  13. Oh honey, just WOW.

    I found you through HerBadMother’s tweet a few days ago and have been reading and reading and not saying anything because…wow.

    I know a tiny, tiny bit how you must feel, because I have chronic pain issues and a few years ago a very bad doctor was dismissive when I saw her for a painfully infected ingrown hair by my bikini line that turned into MRSA septicemia and multiple surgeries resulting in a wound that had to heal “open” for three months, during which nurses came daily (once I was home) to pull packing out of the thing and shove new in and YUCK but oh wow, devastating as that was for me (I got the whole post-staph rheumatoid phenomenon and was using a walker at twenty-seven, which was humbling) it seems so trivial by comparison.

    I’m so sorry this happened to you. I’m sorry they didn’t listen; I know how awful that feels and I know a little bit about what that anger tastes like. I’m sorry you’re missing your baby. It’s awful that you can’t be with him. I hope you get the hell out of the LTACH as soon as is safe to do so, and if you ever want to talk to someone who knows a teeny, tiny bit about what all of this is like, drop me an e-mail. I’ll be reading. xox

  14. Big hugs to you and your family.

  15. I’m so happy you will get to be with Isaac tomorrow!!! Hang in there Kate, you are doing an amazing job! Many hugs(I look forward to the day that I get to give you a real one!), your Old PAL ;o) ~Shannon~

  16. Kate-

    I loved reading your update. So excited for you to see Isaac so soon. And-I must admit I burst out laughing over the bay leaves comment. You’ve still got it! Hugs!

  17. what a wonder little blessings can bring. i have my calendar marked, wow a week! hang in there friend this nightmare may finally end! and to top it off a FAMILY DAY – WOOOOOOOOOOOHOOOOOOOOOO! Love you!

  18. A week? Wow! That’s must be awesome and frightening…but it will be fabulous to get the hell out of a medical facility.

    Keeping my fingers crossed for some lovely weather for you and the kids and little Isaac.

    XOXOXO

  19. A week makes you sound like even more of a superhero than you already are 🙂

    And that protein order sounds like a great excuse to eat all the steak you want-can I order in for you?


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