Monday, June 5, 2006

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.



  1. Good Morning Chrissey.Nope i don't think for one minuet that you are being Paranoid so don't go beating yourself up about it.You are just being Cautious and there's nothing wrong with that.Sometimes the doctors overlook things that we can see plainly.If you are concerned then why not take the doctor on one side and have a word with him.Air you views on how you see John's condition.Most doctors are sympathetic and will listen to what you have to say.I hope and pray that John will be ok this time.

  2. It sounds like you need to sit down with the doctors and ask all these questions, it's so important that you feel happy and confident in looking after John when he gets home. I hope you can get it sorted. Jeannette xx  

  3. Good luck with everything, Chrissy.  Let us know how it goes.  Will be praying for you both.

  4. I agree with the other comments m'dear, that maybe you could discuss all of your worries with the Dr's while you're still there.  Maybe you have already, but they need to answer all of your concerns.  I think it's terrible that you had to rely on what John overheard by chance to deal with the PICC line!  
    Sara   x

  5. Talk to them about your concerns ASAP.

  6. Can only copy previous comment. Voice all concerns, ask any and all questions. It's not very good that you're not being told, but then it'll be up to you to ask. You're having to do a lot, so it's only fair they tell you the works. Don't feel you're being paranoid or whatever. ASK

  7. Sissy, WRITE DOWN all concerns and have them answered before you go home.  After I got off the phone last night and had time to think about everything you said I knew without a doubt that YOU ARE NOT being over-cautious or paranoid.  They need to communicate better.  I thought back to my other hospitalizations.  Sometimes they wait until the last minute at discharge to tell you everything, but that IS NOT okay.  What they put you through over the weekend WAS NOT okay either.  ASK, ASK, ASK!!!  Love you guys!!! xoxoxoxox

  8. Your not paranoid, you have just been down that road before.   Make a list of your concerns and talk to your doctor.
    Hugs and prayers,        Dawn

  9. Valid questions, valid concerns.  Take the bull by the horns and know what EXACTLY is going on before you leave Hershey.  You can't be in the dark about this, and I'm sure the medical team doesn't even know you are.  Speak up, my friend!!!!!!

  10. Krissy,
    They can't discharge John without knowing that there is someone knowledgeable to do all these things.  If you tell them you just don't know or understand the instructions they will have to set up a discharge plan.  That's the law.  If your insurance approves and I am sure that in this situation they will......... the hospital discharge person has to set up some sort of home care.   Not just an aide, although that is good to help you with John's minor stuff, but an RN to come in and do all the medical stuff.  Voice your opinion.  Don't worry about making them feel like you are second guessing them.  Don't worry about anything but your concerns for John.  Tell them what you want them to do.

    Prayers, LuAnne

  11. Hello Krissy,

    I doubt the hospital could send John home without any support.  If you`re not happy do tell them and ask them to explain everything to you, over and over again if need be.  You know how John is feeling, so trust your intincts.  Take care. :o)

    Love and Hugs

    Sandra xxxxx

  12. I think you need to write down all your concerns and go over each of them with the doctor.  Sounds like you need more information.  The not knowing what could happen or needs to happy is going to make you crazy.

    Keeping you in my prayers.


  13. make sure the Drs know all your concerns!!!

  14. Krissy,
    don't doubt yourself--but don't doubt the doc either.
    Write all these down and ask the docs about it.
    be matter of fact with them--just like you have been with us.
    you need to advocate for yourself and you can do it!!!!!

  15. Can understand your worries Krissy. I think you need to talk all this out with either his doctor or a senior staff member.
    Love and Hugs
    Sylvia xxxxxx

  16. you know your hubby better than anyone. Of course you are having all those doubts. How scary to think they will send him home and so many things can happen. My prayers to you hun.