Tuesday, September 12, 2006

John may be coming home soon

Good morning.  This will probably be short (yeah, right, LOL) because I have to be over to the hospital before 6 AM to make sure John gets his cereal, juice and milk.  That's in case they take him for his four hours of dialysis at six thirty. 

So here is the deal with John.  They are talking about
discharging him at the end of this week.  I have very mixed emotions about this.  They will be sending us back home.  John will probably need blood two times a week (that's four bags of blood a week) and dialysis three times a week.  That's five days a week where he will have to travel outside of the home to get blood products or dialyzed.  I am a nondriver right now due to road narcolepsy and we have no idea how he will get to his appointments.  

One good thing is the insurance should cover a home nurse for John.  I think he will require daily blood draws.  She will also have to change bandages on two ports (one that he is going to have put in for blood draws - he already had it but it became infected and came out yesterday - and also a permaport - John is going to get a permaport if he continues dialysis).  We will need a company that supplies us with bandages and flushes.  I am making the NURSE do the bandages.  They do not even allow the nurses to touch the bandages here in the hospital, it has to be a special IV team.  So I will tell the insurance company that I just WON'T do it.  I will however however be willing to flush the ports.  He also will probably need Vancomyacin again due to an infection.  I am willing to administer that.  So you see, there are some things I am willing to do, and some not.

In case I have lost you, I am writing all this to say that there are a lot of issues involved.  And I have not even begun to cover them all here.  The hemotologists/oncologists were going to release Johnw/o dealing with them all (I think).  I called the social worker/nurse coordinator yesterday and told her that John would probably get released this week, and what he needed.  I had a three page list, LOL.  I told her what his insurance did and did not cover.  She had NO idea.  She told me the other day she was new at her job.  She had some facts wrong!  At any rate, we made some progress.  She has to set up where John will receive dialysis, where he will get blood, and get a home nurse for him, and get bandage supplies and flushes.  That is only minimum of what she has to do.  I told her she must look into transportation.

Ok, this has probably gotten too boring and long, and if you have skipped and skimmed that is ok.  Suffice it to say, I was doing a lot of the social worker's job.  And if the hospital doesn't get on the ball and set things up, I am not willing to have John get out yet. 

John walked by himself, totally by himself, for the first time yesterday.  He was exhausted, and had to get back in bed. and it was just a little down the hall.  But he did it.  He used a walker.  The social worker said she believed insurance would pay for a walker.  John stays about 90% of the time in bed and 10% sitting in the chair.  Please pray for him that he gets stronger!  Thank you! 

So that's about it.  Right now I want to thank all of you who care about John and me so much.  And for those of you who have helped me get through this recent situation, thank you (you know who you are).  I don't want to start listing everybody, for fear that I might leave somebody out!  But thank you for helping me have a clear head, and for suggestions for the social worker!  And thanks J-Land for being my rock!  Also thanks Daddeo and Sissy for being my rock also!

That's about it.  Sorry this was so technical,

Love you all,  Krissy :)

28 comments:

  1. jlocorriere059/12/2006 4:55 AM

    It's great that John may be coming home but only if you're confident enough to look after him and recieve the support you need. There's no way he should be even considered for sending home until they sort out all of the various care needs you'll have and transportation for his dialysis and transfusions. You had issues before about thngs like this and I hope they can sort it all before allowiing John to leave Hope Lodge so that you can enjoy John being home and be happy about the help you get. Praying you'll get the help you need. Jeannette xx  http://journals.aol.co.uk/jlocorriere05/Welcometomytravels/

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  2. I can understand your concerns about him coming home right now.  At least he will be more comfortable.  As far as transporting him for blood and dialysis, the home health care nurse should be able to do that.  My Mother, the one with really bad MS, has a home health care nurse.  Part of her duties are to get her to appointments, and go the store.  Of course, changing the dressings will be covered, so no worries there.  Hope it all goes smoothly.

    Greg

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  3. sugarsweet0569/12/2006 7:46 AM

    I hope all this is sirted out BEFORE John leaves the hospital. Need to make sure EVERYTHING is ready before he comes home.
    Continuing prayers for you both.
    Hugs, Sugar

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  4. quartrlyfecrysis9/12/2006 7:50 AM

    Glad that John is doing well enough to be able to go home.  Hopefully things will get sorted quickly with the insurance and arrangements.  There must be some form of transoportation to the hospital that's available.  It will be nice to have the comforts of home :)
    You two take good care~
    ~Bernadette

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  5. I'm praying hun. I'm so happy that John walked even though it was just a little. It sounds like he still has so much to go through. Hugs to you.

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  6. are they sure coing home is a good idea, i know you don't want a relaspe of some kind if he's prematurely sent home. ask questions, be stern. i will also keep you both in my prayers. (((hugs)))
    Cindy

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  7. newsworthy8229/12/2006 8:18 AM

    thanks for the update. That is exciting that John may be going home soon, but I am sure you have a lot of worries on your mind about how everything will work. That's awesome that John was able to walk yesterday. I will pray he continues to get stronger!!
    HUGS to you & John!
    Melissa

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  8. hugsdoodlewacky9/12/2006 8:23 AM

    ((((((((((((((((((KRISSY))))))))))))))))))))I hope this all works out and you have everything worked out for John when He comes home.I know you will be glad when He comes home and John will be glad to.I just hope and pray that it all works out.And you dont have to be sorry for writting your entry,thanks for letting us know how you and JOhn are.You will be in my prayrs.((((((((((((((((((JOHN)))))))))))))))))))

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  9. That would be wonderful if he could go home. I'm sure he'd feel better being in his own surroundings.  Linda in Washington  

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  10. Krissy, that sounds like a lot to deal with if they dismiss John, but being at home is bound to be a positive thing if you can get all the logistics sorted out. Hoping and praying for both of you that the DRs  make the right decisions, that John continues to gain strength & improve and that you maintain the strength you have!!
    Love to you both.  Barb  

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  11. i would deffinatley make sure they have it alls et up for you and it is all correct, you have the right to say you want to stay in the hospital for a bit longer if you dont feel safe going home just yet. i am happy to hear that they want to send him home! you are doing such a wonderful job of taking care of your husband. i hope all works out this time and you are able to get a home nurse to help with everything
    take care
    noelle

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  12. Krissy,
    I am so glad to hear that John may be going home. But, you should know that they cannot send him home unless EVERYTHING that he needs is in place.  If you are not sure his current social worker is capable of doing these things, ask for her supervisor.  Don't feel bad about doing this because your main concern is having everything John will need in place before he goes home.  As far as transportation, your insurance may or may not pay for that.  But some cities have transportation services.  Here in NY we have Access A Ride, it's part of the MTA (which is NY's bus and subway services).  The social worker should know this and find a way to get you and him services quickly (like yesterday).  What the social worker just has to do is make contact with your insurance company.  The insurance company has personnel just for this purpose.  They coordinate with the hospital.  If you have any questions, I think Val has my phone number.  So call me and I can try to explain it more.  Before I worked in medical records I worked in the social service dept of the nursing home.  Good luck, LuAnne

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  13. Krissy, find out about what kind of walkers they will pay. Mom has one that has four wheels, a seat and brakes! It is amazing. Tammy

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  14. midwestvintage9/12/2006 10:00 AM

    Krissy,  I understand the fears of bringing John home, but it will work out OK.  

      Our oncology unit has a mini bus that picks up patients.   We have a mini bus for dialysis patients also.  I am not sure if there is a cost involved but it is minimal if there is.  I would think there is something like that where you live.  

      It is good he is going home.   The longer a patient is in the hospital the better the chance he will get a hospital aquired infection or nosocomal infection.  He is safer at home and will be more comfortable once you get all the issues worked out.  You and he will get along great I know.  I wish I lived closer LOL.  Just make sure you train the social worker to get you all you will need.  Your insurance should cover the walker, a hospital bed if necessary, commode, or anything else.

      Best of luck and please take care of yourself also.

                          Julie

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  15. Good luck with all of this...sure is a ton of stuff for you to deal with...let us know what is happening...Jae

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  16. Pleased to hear John may be coming home, Krissy, but with a lot of home care and outpatient stuff still attached. I hope that all works out OK. Best of luck, and keep us posted.

    Guido

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  17. Krissy, I hope and pray that all will be well and that John will come home very soon.  You are doing so well in making sure everything is going to be right for him.  God bless both of you. :o)

    Sandra xxx

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  18. kaydeejay54499/12/2006 7:52 PM

    My continued prayers and positive thoughts to you both!  Keep moving forward - you're going to get there.
    Love,  Kathy

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  19. i hope everything works out for you getting back and forth to apt. keep the faith.

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  20. that's wonderful...(though scary news for you somewhat)...and how smart of you to know to enlist the social worker's help and what to ask for!!  you'd be surprised how many wouldn't know or take the initiative.
    http://journals.aol.com/rbrown6172/Ginasspace/
    gina

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  21. Krissy,
    I don't think you got too technical.  I think you gave a good picture as to what the true situation is.  You were being realistic ahead of time to prevent problems when John gets home.  That's being a smart girl.

    You are not only a loving person, wife, sister, aunt, but a very inspiring friend!

    I hope John gets stronger and I send hugs and prayers to both of you!
    Merry
    http://jounals.aol.com/merry1621/Merrysthoughthopesdreamsgoal/

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  22. I have never stoped praying for you and John even when you said he was doing fine! I know how fast it can all change. I wish you both good luck with things and if you ever need to talk I'm either an e mail or im away! Love and big prayers to you both!!!

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  23. tendernoggle9/12/2006 10:58 PM

    I know this is all so scary for you to have to deal with on your own..no one knows how it really is until you have been there...I don't blame you for wanting them to do what they should be doing for John...and als I would make sure that all was set up 100% before he was discharged home.
    God bless and keep you both,
    carlene

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  24. Sounds like you are doing the right thing in making sure all the details are taken care of first. It is scary with every thing that you have to make sure happens. I will keep you both in my prayers, strength for both of you.
    love
    Barbara

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  25. princesssaurora9/12/2006 11:43 PM

    Prayers coming for John and you.  Make that social worker get everything just right before you allow them to discharge!!!  I know from experience that otherwise you won't get what you need when you need it.  Use a spiral notebook to keep all the info straight and phone #'s etc... this way everything is at your fingertips when you need it.

    be well,
    Dawn

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  26. Dear Krissy;
        I haven't said much, but I have read your updates on John. You've both been in my prayers. I remember coming home with my husband after his surgeries. It's hectic, but somehow it should come together. Good luck to both of you.
    Jude
    http://journals.aol.com/jmorancoyle/MyWay

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  27. Krissy, step-by-step, inch-by-inch, this WILL get worked out.  With all of our angels =).  I haven't called you as I was waiting for your call, knowing that you are soooo busy.  Knowing that John needs you for everything.  I will call you tonight if I don't hear from you, k, honey.  I am on my way to therapy and then to see Mr. Michael.  Michael Sanchez has been staying with me this week.  I will tell you about this when I talk to you next.  So, is there ANYTHING I can do for you before you get home?  I am picking up kitty litter so you have some when you get home cuz your kitty is running out.  Ummm, what else?  Don't know.  I miss you guys sooooo much!!  I got the crochet needle for you and a book on how to crochet from our little mommy =D!!  I just need to get you some yarn.  When you get home we will pick a day for me to spend the night =!!  Yay!!!  I love you sooooo much!!  Love, your sissy who loves you with every inch of her heart xoxox

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  28. Thank you soo much for your comment on my journal.

    It means the WORLD to me and it made me smile, which tonight, is a BIG DEAL..thank you so much. *HUGS*

    I also pray for you and your family too as I know it's a rough time.

    I shouldn't be complaining when MUCH more serious stuff is going on with people. It's easy to get sucked into one's own stress bubble whilst falling totally blind to those around you.

    *HUGS*, and thank you.

    All the best always,

    Stevie
    xxxx

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