Thanks for your good advice!

Thank  you all for your excellent advice of just going ahead and talking to the medical personnel about my concerns.  I talked to them some yesterday.  And they answered some questions.  But they didn't know fully what the discharge plan would be because they decided they weren't going to send John home yet after all, because of his poor kidney functioning.  So I guess they have time to work on a plan.

I spoke immediately to them about the situation of them not showing us how to take care of the PICC line, nor where to order the supplies from.  Nor scheduling the bandage change.  The nurse practitioner was immediately apologetic in her neglect.  This made me feel a lot better and gave me more faith in them as a hospital.  Because they have always been totally on top of everything in the past.  I wanted to have that confidence in them again.  

I feel a lot better about things, I think we will have a plan in place when it is time to go home.  I hope.  If not, I will make sure there is one.  

And I see now that we are not going home (because John is having kidney function problems) that my inclinations about something being wrong with his health was right.  I was not just being paranoid.  I always know when something is wrong with him.  If they had just sent him home without checking his creatinin level it would have been bad.  One of the doctors had actually suggested just sending him home this past Friday.  The nurse practitioner told me so.  But she told him she didn't want to do that, and could he PLEASE come in to Day Hospital on Monday (yesterday).  I am glad she did.  If she hadn't we wouldn't have known how his kidneys were functioning.  Or maybe the test would have been done back home with a home nurse, showing chronic kidney failure, and we would have had to turn right around and come back to Hershey. 

Okay, enough already.  Got to go do some other things.  I am up much too early, but I am having trouble sleeping these days and I don't really know why.  Maybe I will go back to bed.

Love, Krissy :) 

Waiting for the other shoe to fall

It's been a long time since I have done an entry in this journal.  One of the reasons is because I wanted to update it, and I didn't want to write an entry and have it out of order.  But tonight I thought it was so important that I write, that I am going ahead and doing so.  I have a lot on my chest to get off.  Mostly I want to say that I think that John's doctor might send him home, and I just don't know if he is ready.  I am not trying to second guess the doctor.  It is just that John has so many things wrong with him, and I have a bad feeling on this one.

Okay, call me paranoid.  But the last two times John was hospitalized, I told myself, "By the end of the day, John will be hospitalized."  Neither time John had a fever.  Actually, I don't recall him having any signs whatsoever that he was going to have to go.  I just KNEW.  Call it women's intuition.  Or wife's intuition or something.  The times before that I knew also.  I just looked into his eyes and could see a fever or something coming on.  I can tell when John is not doing well.  I can tell before the doctors can tell when John is not doing quite right. 

And I don't have a good feeling about John going home.  Unless they give him home nursing care.  I don't know if they plan on giving him a nurse or not.  I guess I will find out tomorrow. 

I don't want to go all the way back to State College and have to turn around and come back again in a week.  Am I being paranoid and scared?

Okay, here's the deal.  They will probably be sending him home with a PICC line in.  A PICC line to draw blood from to take his labs.  It occured to me tonight that there is probably nobody in State College that knows how to change a PICC line.  Not even nurses can do it here in Hershey.  It takes the PICC team to do it.  And if he doesn't have a PICC team in State College do it, he will have to come to Hershey once a week to do it, or he will have to have the PICC line removed before he goes home to State College.  If he has the port (PICC line) removed, how will they take his counts?  He has been having horrendously low white and red blood counts.  He has been needing red blood packs (bags of blood), and has had very low white counts and needed to wear masks.  Also, how will they monitor his creatinin level?  What if it got high enough to need dialysis and they didn't even know?  Because they weren't monitoring it. 

Oh yeah, they can stick him each day when they want to take six to eight vials of blood.  But they usually don't like to do it like that.  They usually like to do it through a port of some type. 

You may think these are silly questions, and that they have already thought of them, but I don't have so much faith.  For the first time in over a month, they gave John two days off yesterday and today (Saturday and Sunday).  We were very happy, and then Saturday night it occured to me that they had never told us how to flush a PICC line nor given us PICC line supplies!!!  We were going to have to take care of the maintenance of the PICC line ourselves for the first time (Day Hospital had been doing it for John every day up until this time.).  Fortunately John had overheard a nurse talking to somebody in Day Hospital the other day.  He also remembered some of how to do the Hohn chest port he used to have, and I remembered some, and together we figured out how to flush the PICC line. It was kind of frightening, because we needed a different amount of heprin, and it took John to figure out how to get the different amount of heprin in the syringe.  You also have to apply a different amount of pressure when you flush the lines.  We overheard that too.  And another thing. John was due for a PICC line bandage change on Sunday which he missed because he had the day off from Day Hospital.  It was very important that he got it changed, because he has only had the PICC line for a week (remember, they put in a new PICC line), and it is imperative that they change the bandage on time so that it doesn't get infected.  Well Dr. Claxton told Day Hospital to give John two days off without scheduling a bandage change.  We have to make sure the PICC line team changes the bandage at Day Hospital on Monday.  And one more thing.  They didn't call the supply company for us.  I don't know WHAT they were thinking.  We didn't have the right size syringes for the line.  If John hadn't have overheard the amount of saline and heprin that was supposed to be in the syringes it would have been disasterous.

I am saying all of this to say, yes we made it through, but I don't like the sloppiness of what was done to us, and who knows what kind of treatment John is going to get when he goes home.  Are they even going to draw labs on him???

Okay, enough, like I said, perhaps I am just being over reactive and paranoid.  Maybe he doesn't need to go home with a bunch of labs drawn.  Maybe he will do just fine at home.  Maybe his creatinin level and his counts will clear up immediately.  Why am I apprehensive?  Maybe my feeling this time is wrong.  

I hate not know.  I am trying to relax here.

Krissy