Off We Go

Wednesday, May 28, 2008

siuh

After a rough day at the hospital yesterday, doctors finally saw things my way and have a transport team coming to get my Sunshine Girl later today to bring her to Philadelphia.

A mild panic sets in–will Mr. Diva remember to feed my fish?  Will I bring enough clothes?  Did I remember my cosmetics case?  Got to remember to copy my hard drive onto my flash drive so the laptop is useful.  Can’t forget the cell phone charger.  This is the kind of stuff that goes through my mind every single time I make a trip to Philadelphia.  And it needlessly drives me crazy.

Luckily, the Philadelphia hospital is just an hour and 20 minutes from home and I can usually come home on the weekend for a few hours.  Still, I get anxious thinking I’m forgetting important things like medicine and medical records.  Ugh.

Anyway, although my Sunshine Girl is in need of a new kidney, it may take months to get a donor.  The good thing about kidney disease (unlike liver disease) is that there is always kidney dialysis, if needed, until they find her a new kidney.

I had a long talk with one of the renal transplant team members yesterday and it was an eye-opener.  In order to get her transplanted there, I need to commit to at least 2 weekly visits for follow-up.  Oh and to get her listed for a new kidney, we’ll have to undergo 2 to 3 weeks of testing to make sure it is the right choice (like as if we have any other options…duh!).

Mr. Diva continues to be so stressed out.  He just doesn’t know what to do.  He thought one of these would make my commuting easier.  Thanks guy!  Nothing wrong with my current Beamer, just the color–gun metal gray.  I’ve been bugging him for a white one ever since I got the gray one two years ago.  Poor guy.

Just want to REALLY thank everyone.  The wishes of health and strength bring me to tears.  I read each and every comment and email…I just don’t have enough hours in the day to respond.  But know it means the world to me right now.

I’ll update everyone as soon as I can.

lisasiggie2

Entry Filed under: HOME, RAMBLINGS, liver transplant. .

21 Comments Add your own

  • 1. thornberry  |  Wednesday, May 28, 2008 at 9:11 am

    Best wishes for your Sunshine Girl and for your family. My thoughts and prayers are with you. Take care of yourselves.

  • 2. Belinda  |  Wednesday, May 28, 2008 at 9:31 am

    Lisa, please take care of yourself as much as you can right now. I can only begin to imagine how extremely stressful this must be for your family.

    Your Sunshine Girl is a beautiful young lady and she is very lucky to have a mom like you. :)

    Please know that I am thinking of you every day and hoping and praying for the best for you and your family.

  • 3. Missy  |  Wednesday, May 28, 2008 at 9:40 am

    Lisa,
    Please know I am thinking of you and remembering your family in my prayers.
    Sending you good wishes,
    Missy

  • 4. Ashley  |  Wednesday, May 28, 2008 at 10:12 am

    You guys are in our prayers..

  • 5. Tina  |  Wednesday, May 28, 2008 at 10:40 am

    Your Sunshine Girl is in my prayers, along with your whole family.

  • 6. Little Miss  |  Wednesday, May 28, 2008 at 11:07 am

    Praying for you still.

    Miracles happen. Donors happen. One of my favorite blogs is Confessions of a CF Husband. His wife just had a double lung transplant and is surviving, happily with a new baby girl (who was a micro preemie).

    So I know miracles can and will happen. You deserve the best. Take care of yourself. Don’t worry about us, we will still be here.

  • 7. Jane Doe  |  Wednesday, May 28, 2008 at 6:04 pm

    Hi Lisa
    WOW!!! do you ever have a wonderful support system through blogging!!!

    Reading through the comments of “Launching a Children’s Clothing Line as your Child Undergoes a Kidney Transplant” brought me to tears! What a wonderful group of women you hang with!

    You know what will keep you sane and mentally healthy during this stressful time so you just go right ahead and do what YOU need to do for YOU and your daughter!

    You and your family are always in my thoughts.
    This brings back memories of when my oldest dd (then 18, now 30) was diagnosed with a brain tumor … I was a mom, fighting for my child’s life. You are doing the same.

    Take Care
    Valerie

  • 8. Keely  |  Wednesday, May 28, 2008 at 7:20 pm

    Best wishes for you all. Sending cyber-hugs and positive thoughts your way.

  • 9. Anne in SC  |  Wednesday, May 28, 2008 at 10:44 pm

    Sending many prayers your way for your Sunshine girl and your entire family!

  • 10. Suemonster  |  Wednesday, May 28, 2008 at 11:33 pm

    Lisa ,

    Would you please email me and let me know where I can reach you ….Id like to come up to Philly and keep you company ..take you to lunch …….do some running around for you so you can just concentrate on your family . I can either keep you amused with antics or just take direction as to what you need done and be invisible . Either way IM COMING ….now given the fact you already know I can get lost in a parking lot , I would REALLY appreciate some info from you .

    Mr Diva need not worry about feeding the fish . They wont be there long . :)

    Sue

  • 11. Toni Hamel  |  Thursday, May 29, 2008 at 4:45 pm

    Sending good thoughts your way… I can’t imagine what you are going through…

  • 12. MC  |  Thursday, May 29, 2008 at 4:46 pm

    I’m sending up big prayers for you all Lisa! I cannot imagine the stress or the strength you have to see this through - but I know you’ll do it all in true Diva style! Bigs hugs gal - I’ll keep checking in for updates. God Bless you all!!

    MC

  • 13. Lisa thedomesticdiva  |  Thursday, May 29, 2008 at 6:52 pm

    Awww girls…you make it all bearable.

    Looks like we will be in the hospital (Philadelphia) until at least next Wednesday (Marielle’s birthday).

    The docs are trying to figure out a few things, change up some meds, lower her blood pressure, etc. She’s in good spirits.

    And no Sue…I’m hiding from you…LOL. You have more than enough to take care of at home. Seriously, I’m ok. And my fish had better be alive when I get home (I have two other guys in the neighborhood checking in on them…haha).

    With friendship,
    Lisa

  • 14. Katie D'Aprile  |  Thursday, May 29, 2008 at 8:51 pm

    Lisa,

    I’ve never posted to something like this, but I felt that I wanted you to know I’m hoping for the best for your family. I’ve enjoyed your blog ever since I stumbled on it via the Bernina website, and no, while my sewing area still isn’t picked up, I do enjoy reading about your adventures.

    Best wishes that each day finds Marielle feeling a bit better and that her wait for a kidney is a short one.

    Katie

  • 15. Beth  |  Friday, May 30, 2008 at 1:26 am

    I am at a loss for words, Lisa.
    I was hoping she wouldn’t have to go through this again.

    I saw, keep working on your line. If you were a knitter, I’d suggest you knit while you sat there. Goodness knows I would. :-)

    Take care of yourself, hon!

  • 16. Suemonster  |  Friday, May 30, 2008 at 4:11 am

    Checking in on you and the beautiful one . Im glad your staying so positive and Marielle may be home soon in time for a big day !

    BUT …….You know ..you can RUN but you cant hide !

    The only thing that should be hiding is those fish . They may not like the girls swimming pool …esp since Simba likes to swim in it …..and DRINK from it ……but hey IM sure they could survive awile in the belly of the beast ……

    Laughs evil fishnapper type laugh and signs off…….

  • 17. Chey yummy*baby  |  Friday, May 30, 2008 at 3:40 pm

    So Lisa, how does one go about being tested to see if they are a match? I know it is unlikely, but my neighbour was a match for her husband’s brother’s wife.

    My thoughts and prayers are with you even though I am not around much anymore.

    And I’m keeping the giant fish in my prayers too, they just might need it. They’ve been through almost as much as you.

  • 18. Mary E  |  Friday, May 30, 2008 at 4:04 pm

    I’ve been out of the sewing/blogging loop lately, but was very concerned upon checking in and reading about your beautiful daughter. Please know that my prayers and thoughts are there for all of you. You are at least blessed to be in a good area for medical care, and it’s so good you can be there with her.

    I know it’s a hard choice about your clothing line, but trust yourself that you will make the best decision. I would probably put it off because I know what I can and cannot handle. But you are a dynamo of energy and enthusiasm, and continuing with your line may be just what you need!
    Mary

  • 19. Lil_Birdie  |  Friday, May 30, 2008 at 10:15 pm

    Keeping you and your family in my thoughts and prayers .
    Hope they find a matching donor for Marielle soon

  • 20. Carrie  |  Wednesday, June 4, 2008 at 4:16 pm

    You know I’m thinking of you all. Please give that sunshine girl a big hug from us all here. You know I’m only about an hour away from philly so Mr. J is welcome to come here and hang out for as long as you need it. You know his future wife won’t mind ;)

    Love ya all!!
    ((hugs))
    Carrie

  • 21. thedomesticdiva  |  Monday, June 16, 2008 at 6:31 am

    thanks girls! We make me smile!

    With friendship,
    Lisa

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