Sunday, January 13, 2013

More changes...

I'm home right now and thought I'd quickly post an update while I'm on my regular computer.  Typing things on my little Netbook at Candlewood seems to take me a lot longer, so I thought I'd take advantage of having access to my regular computer and post an update.

Reid is doing much better.  In fact, I came home for a couple of days and when I went back I could see a difference.  He's still very fatigued, but he's spending a good part of the day sitting up.  His appetite has also improved.  It's far from being back to normal, but he usually eats at least one half way decent meal a day.  And the shortness of breath is practically gone.  He coughs a lot less now.  I'm a little paranoid about all the flu this year, but he's not out in public and wears a mask when he goes to the hospital.  We've all had flu shots so hopefully no one will get sick.  I keep the hand sanitizer people in business!

Reid's got a ziplock bag full of medication.  I told him it reminded me of my father but about half of it is just medication he takes as needed.  Daily he takes the anti-rejection medication, anti-fungal, anti-viral, and probably one or two other things that I can't remember right now.  It's the anti-rejection medication that requires a daily three hour infusion to flush his kidneys.  We were going daily to the hospital, but they decided the infusion could now be done outside the hospital.  His blood work has stabilized and he will now only go two days a week to the hospital for a blood draw.  While he's there they'll give him the infusion.  He'll also see the stem cell doctor once a week during the infusion.
 
Meanwhile, we were given a pump and instructed on how to hook him up for the daily infusion.  I don't mind telling you that I find it a little nerve wracking, but hopefully in time it's won't be as difficult.  The nurses at the hospital all make it look so easy, but I feel like I'm all thumbs.  I'll be going back to Candlewood in a little while, but Keith will be starting the infusion this morning.  We're all doing it now, but Reid also knows how it's done and can prompt us when we have trouble.  We've got printed instructions to follow too.

I'll be staying tonight and then Troy will be arriving Monday morning to relieve me until Wednesday.  Meanwhile, Keith will be staying at the house taking care of the menagerie and returning to Candlewood to relieve me on Saturday.  Did you follow all of that?  Anyway, we do have everything covered so that Reid has someone with him 24/7 as required.

I was able to extend our stay at Candlewood until February 15th which is only five days short of the 60 days post transplant we're supposed to live down there.  The Houston Rodeo is cutting our stay short those five days, but I'm hoping the doctor will say it's OK to move back home at that time.

Thanks again for your support and prayers.


9 comments:

  1. Goodness! Your schedule and all you have to do sounds exhausting!! It's so wonderful that you have such good boys to help ......
    It's so good to hear that Reid is improving!!
    Keeping you all in my thoughts and prayers.
    Hugs,

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  2. Girl, do you ever meet yourself, coming and going?

    Sounds like things are going quite well. Prayers they stay that way.

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  3. I knew he would pull it off, Betty...I just knew it!...:)JP

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  4. Good to hear Reid is doing well. I'm sure you'll get used to the pump and all will be fine. Thinking of you, my friend. x

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  5. Oh Betty. What a ride. Take every moment for yourself you can.

    So many are keeping you all in prayer. Be kind to you...and rest when you can!

    Such grand news!

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  6. Praise God! It really seems to me that he is doing much better this time than he did the last time. I'm so glad that you are getting to spend some time away and rest. I'm sure the doctor will be fine with letting him go home 5 days early. After all he was doing so good at the hospital they let him out a few days early from there!

    Hugs,
    Angela

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  7. Sounds like he is coming along just wonderfully! Good news to hear. BTW, If you are all thumbs, then someone else must be all fingers! You know to keep things balanced.

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  8. It sounds like Reid is doing great - is he doing better and feeling better then the first time? I hope so - I want this time to do it's job!

    I love the boys helping you.

    And I hope you can go five days early.

    Will he always have to be on anti-rejection meds? And all those others or will he be able to get off some.

    And PLEASE and I am being serious - take care of you.

    sandie

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  9. Excited that you will have Reid home very soon! Your schedules are exhausting! I wish all of you much peace and rest. Praying each day. I sure enjoyed having you in the Santa Swap last year. It was a wonderful experience I will never forget! I still need to thank my partner this year! It has been a busy work time at my office and I don't get around here as much as I like!

    Glad I caught you! Hugs Anne

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