Thursday, May 4, 2006

Baxter the Pole

Wow, the days are going by and I haven't done an entry.  Today (Weds. night) I am finally slowing down enough to write.  There has been so much going on.  Today was one long day, but let me back up a little bit.

I don't know if I have mentioned this before, but John is in something called "Contact Isolation".  So when the doctors and nurses come in, they dress up in their "space suits" and gloves, and occassionally masks.  This is because they don't want to get his Cytomegalovirus.  And they wear the masks because they don't want to give him anything.

John is still feeling pain in his abdomen.  The doctors think it is from the Cytomegalovirus (or perhaps another virus).  That is why they did the Upper and Lower GI.  To find out what virus is causing the pain.  On Monday John got the GI but still hasn't gotten the results back.

Before John got the GI he got three bags of platelets because his platelets were too low.  John has named his pole that he is attached to "Baxter".  His last one was named "Freddy".  I asked him why this one was called Baxter, and he said because it said Baxter on the front of the pole.  Pretty sharp he is, LOL!  So at noon on Monday John had two bags of sodium, a bag of vanco (two kill the infection in his chest port), and a bag of platelets hanging off of Baxter.  Then when he was done with his platelets, off to his GI he went.  Unfortunately, John did not go into "twilight" like they had promised him, and he was awake for the whole thing.  

On Tuesday morning Dr. Claxton came in John's room to speak to us.  He said he thought John's main problem with his abdomen was not GVHD, but a virus, probably CMV.  He said the doctors found "inflammation" during the GI.  John could have told him that.  Because he was awake during the procedure, he heard the doctors discussing that they had found some things!  Dr. Claxton told John that he would be on Foscarnet (an antiviral IV) for at least five days to clear up any viruses he had.  He also said that John's counts really concerned him, and that John would probably bein the hospital another seven to ten weeks. 

The next thing that Dr. Claxton said made my heart sink.  He said he had some results from the last bone marrow biopsy.  He said that John's marrow is "thinning".  He said that it was "probably" because of the CMV infection.  He said he didn't "think" that the MDS was coming back.  But it "could" be the MDS coming back.  PROBABLY NOT, but COULD BE.  I guess if the MDS comes back that will mean another transplant.  OKay, so I am not going to jump to conclusions at this time, stay calm Krissy, stay calm.

OKay, so I could go on writing all night what has been going on the past few days.  So I will try to cut this short and just say what is most important.  I guess one of the most important things that has happened, and I don't know if I mentioned this yet, is that they took out John's  chest port (his Hohn).  The infection had been going on so long that the doctor's had to yank it out.  And then today they put in a PICC line.  A PICC line is a different kind of a central line than the Hohn he had in his neck.  But it is very similar.  It has two lumens hanging out of it.  They hang from his arm.  The doctor threaded the line up through his arm and into an artery above his heart.  I know how they did it because they had me in the room watching the whole thing for moral support for John, LOL.  I thought I was going to pass out for awhile there, but I held steady, LOLOLOL.

Okay, I have rambled on enough for now.  I just wanted to say that I am over at Hope Lodge.  And the computer has been fixed again so that is why you are receiving this entry from me in the middle of the night! 

Well, night night everyone, I guess, that's enough gabbin'.  Hope to be back soon.  Pray for me and I'll pray for you.  Krissy :)

25 comments:

  1. Krissy, I don't know what to say,hon.  I am so sorry that John is going through all of this and I hope they can clear up and virus(es) that he might have and alleviate any pain that he might have.  How are his spirits? How are you doing? You sounded"light" but I worry that you might be showing things down so as not to alarm anyone.  Take care of yourself.  John needs you and we need you.  Don't worry, we are praying for y'all.  
    Barb

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  2. Praying for both:)

    Deb

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  3. HEY HUN JUST TO LET YOU KNOW IM STILL PRAYING FOR YOU BOTH

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  4. jlocorriere055/04/2006 5:45 AM

    I'm praying for you both Krissy, it must be so hard for you to have this setback. Jeannette xx

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  5. Krissy,
    Prayers are continuing here in Staten Island.  Hugs, LuAnne

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  6. Krissy, I am praying for you and for John!!!  I am praying that you both feel God's healing hands touching John
    Becky

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  7. Hi sweetie, please know that I am praying for you and John.

    ~ Susan
    http://journals.aol.com/njmom72/TheStrawberryPatch

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  8. Sorry you have such a large bump in the road.  You are so strong, Krissy!  Seven to ten weeks...are you going to stay there with him for the length of his stay?  I sure hope JOhn's pain subsides.  That must be hard.  You amaze me in how calm you truly are.  John is so fortunate to have you right there with him through all of this...take care of yourself, too, Krissy!  Love, Jae

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  9. pixiedustnme5/04/2006 11:19 AM

    It gets frustrating, I know, when you face so many set backs at the same time.  I will continue to keep your family in my prayers.  -Kelly  www.pixiedustnme.blogspot.com

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  10. mastersblynn5/04/2006 11:37 AM

    Hi Krissy!  Just wanted to let you know that I will be around my computer most of today and tomorrow.  If you just want to talk im me and we will have some conversation.  I am praying for you guys!  You are a strong couple and I know you will see it through.  Life is a rollar coaster.  Hang on tight!   Love you, Barbara

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  11. dbaumgartner5/04/2006 12:10 PM

    Bless you sweetie.  Please give John and hug and know that both of you are in my prayers.  

    Deb

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  12. princesssaurora5/04/2006 2:40 PM

    Krissy,

    I am praying for you and for John.  I am so sorry that these set backs have befallen you both....

    Hang in there...

    be well,
    Dawn

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  13. HI Krissy and John! Back at Hope Lodge....Hang in there! Glad you can come on-line. Maybe you will worry less cuz doctors are taking care of John and you can get more rest--I hope. Praying for you both! I will try and get a card out to John soon. I dunno if you can access your AOL account. I may send you a link or two here if I can't e-mail you--I have been finding great Jesus music but I have to refind the links. Take care~I can tell when you are not home--it even feels different & I don't like it much! ;-/  so praying you get home again soon. ;-) Deb

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  14. kaydeejay54495/04/2006 3:59 PM

    Still praying daily for you guys!  Sending loving, positive thoughts your way!                       Kathy

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  15. Sorry about the setback, but John is strong and he'll get thru this. YOU remember to take care of yourself also! Good thoughts and vibes winging your way!

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  16. love2sing20075/04/2006 7:23 PM

    So much medical gobbledygook!  It's all so complicated.  More prayers of course!
    -Kellen

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  17. newsworthy8225/04/2006 7:32 PM

    i really feel for you...what you are going through really puts my petty little problems into perspective. i will continue praying john makes a full recovery.
    melissa

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  18. rachealcarol5/04/2006 7:37 PM

    Hope all goes well Krissy (((( ))) Rache

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  19. I certainly feel for John as what he is going through must be tremendously difficult.    He is fortunate to have you there for him to allow him to think about things other than the hospital.   I am thinking that if I were in his place I would be reading as much as possible as TV can become an unwanted source of mental environment.    I know you have said how much he is involved in reading so I hope it brings him great comfort when you are not there to ease his mind.     There has been some programs on PBS that I have found very interesting and only 3 regular one hour programs on antenna free TV per week.    So tonight unless something on PBS is of interest I will be reading.   I will think of John and you and that his mind is in a great place and not having to think about his condition.   I hope this makes some sense for you and him on how I feel.     You are both special people to me.     mark

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  20. So sorry to hear of this setback for you guys.  Stay strong.  Sending more prayers and hugs.   Dawn
    A Couple of Nomads

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  21. I am sorry to hear about all your setbacks. I will be praying for both of you.
    Barbara

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  22. Krissy,

    All our prayers and love are with you and John. You can do it!

    Charley
    http://journals.aol.com/cdittric77/courage

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  23. I'm sorry about John and am praying.

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  24. springangel2355/05/2006 6:48 AM

    Krissy, you and John are always thought of here and he is truly a strong guy as you are a strong woman...prayers continue for John...hugs and love,
    Joyce

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  25. quartrlyfecrysis5/06/2006 10:35 AM

    Love John's sense of humor!  You're definitely a pillar of strength right now, it is amazing what love can get us through.  I will keep you both in my prayers and my best wishes that John's recovery is swift and steady.

    Take care doll~
    ~Bernadette

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