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 :)