8/18 Marissa Updates

11:45 PM- Wow, her personality is back tonight!  She had a really nice night nurse who let me stay well beyond visiting hours.  She wouldn’t stop “talking.”  She just moves her lips and gets so, so frustrated when you can’t understand her.  I kept reminding her to either type or write to me. 

She really wants to eat.  The best we can do for her is offer her some ice water on a medical swab to wet her mouth.  She’s not happy about that.  She is also in a lot of pain.  In fact, I wrote down questions for her she wants to ask her doctor.  She says the pain medicine they’re giving her is not lasting long enough.  That’s one of the main things she wants them to know.

I also told her about all the people visiting her.  She really doesn’t remember beyond today, but was very happy to hear about everyone, and recognizes everyone’s name.  She clearly appears to have a complete memory of who everyone is.  I read her the card her friend Kasey left the other day.  She loved that dearly.  She wasn’t up to writing anyone tonight, but wanted me to log her onto myspace so she could look at her married friends Blake and Kerry’s webpage.  She insisted on looking at their pictures from their recent beach trip.  They’re expecting a baby, and asked Marissa to be the Godmother.  Marissa wanted to look at Kerry's pregnant pictures, and mouthed to me very proudly, from her bed, (without any coaching,) she’s going to be the baby girl’s Godmother.  Her face is very expressive, and the personality we all love is very much there.  When she doesn’t like something, or you mention a person's name she doesn’t like, or you make a comment she doesn’t care for, it’s *her* distinct personality.   It’s actually making me laugh how expressive she is with all that stuff hooked up to her. 

The nurse is cleaning out her ventilator a lot.  It’s clear how much a mess her lungs are.  While these last couple days, especially today, have been wonderful- now what is clear is the recovery process has begun.  She has so much toxic, septic stuff inside her, and she knows this.  We're being as honest with her as we possibly can about what's going on.  We owe that to her, and she deserves and wants to know.  She seems to clearly follow everything I’m telling her about her health and also seems to  understand she has a long recovery ahead of her.  She’s reminded me several times tonight just because the medicine makes her look sleepy, and she may appear not to be there, doesn’t mean she is not.  She surprised me by having me write a complete letter to her, incase the drugs make her forget what’s going on.  She says if she can’t remember tomorrow she wants Matt, her boyfriend, to read her that letter so she knows exactly what’s going on. 

On the way out she had me make a list of things she wants tomorrow.  Now does that sound like her or what.  She wants a heating pad to put on the large incision the doctors made.  She wants a fan, because the drugs make her feel hot.  And yes folks, she wants her cell phone ☺.  I said what the heck are you going to use that for.  She wrote, “to text.”

5:30 PM- Marissa's communicating!  When I first got here this afternoon, she was pretty doped up and not that responsive.  But about 4:30 my uncle came out saying she was asking for me and mom.  So I was able to bring my laptop back, and she typed out questions.  Through a slow process here is a paraphrased version of the conversation.  She first asked, "what happened," and I was able to explain that.  I told her she was septic, and she nodded yes when I asked if she understood what that meant.  We told her she's going to have a long recovery.  She actually typed out, "I am sick," and the typed to us, "I know it may seem kind of Iike I am falling, but it's because of all the medicine.  But I know everything."  Then she typed asking us to ask the nurse to come give her pain and nausea medicine.  The nurse says she's not allowed to have nausia medicine right now.  She obviously did not want us to leave when visiting hours ended at 5:00.  She's having a hard time understanding visiting hours, (and so are we).  But she sure does not like that rule.  She typed for us to bring her back a fan.  She's very hot, even though her temperature's about 94.  The nurse says the narcotics are making her feel so warm.  Matt's going to bring her laptop full time tomorrow, so she will have freer acess to communicate.

1:30 PM- Mom reports Marissa was sitting up this morning with her glasses on, (which is great,) and continues to be frustrated, (understandably,) she can’t communicate.  She will not be able to “talk” until they remove the ventilator.  I’ll explain in a second while that’s going to take a while.  Mom said after Marissa’s failed attempts to write, (mom said it looked like a series of worms on a page) she created a letter table so Marissa could attempt to “talk.”  It was a very hard process, but Marissa was able to “tell” mom her nurses had upped her pain medication.  They’ve done that because she is in a great deal more pain then the level of morphine she was on was able to treat.  That’s to be expected, though, after having her middle section from chest down to groin cut open, and huge tubes down her nose and throat.  Because she’s on all that pain medicine, though, in the middle of communication mom says she’ll just doze off, then comes right back to.

As far as what her doctors are saying, her lung doctor says her lung x-rays show the upper part is doing better, but the bottom area is problematic.  It’s filled with all those septic toxins.  What everyone has to understand about sepsis- the recovery process will be a long and painful one.  I encourage you to do some reading on sepsis- that’ll help you understand her future.  But the big picture- to get her better she’s going to be on this ventilator for a long time.  So I think our main objective as we move forward is finding a way for her to communicate, to alleviate some of her frustration.

Comments

[kasey]

You could try to get her a magnet board with letters. That might be easier for her!! Thanks for the update. How long will they have the tube down her throat? Moving to a regular room anytime soon?

[matthew]

Kasey, She's going to have the tube for an unknown amount of time. Her lungs are toxic, and that's going to take a while to make them better. While she's on the vent it appears she's going to remain in the ICU. Thanks for your concern.

[Kelly De Ford]

Matthew, When you can will you ask Marissa if she remembers us coming to see her? I would just like to know if she has that recollection.
Thanks,
Kelly