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*Another Update!***UPDATE****I haven't been around here in some time...help is needed....

PJPixiePJPixie Posts: 3,026
edited August 2015 in All Encompassing Trip
....but I thought I'd stop by and share. I've shared this on Facebook where a lot of us have moved to - but for those that haven't, please please please continue reading....

I've made some friends from this board that have CHD's (congestive heart disease) themselves or children with CHD's. My 15 year old son is a heart warrior (3 open heart surgeries) and is currently hospitalized with some complications....please take a moment to read/and or share/donate ❤️❤️ Thanks All!

***My son is out of the hospital, on lots of new meds and a very strict diet. Max will have to return weekly (if not more) to Children's Hospital Los Angeles for Infusions of Albumin. This will be a 5 - 6 hour process for every infusion. He'll have an IV inserted at each visit. My heart breaks just thinking about this "New Normal" for my son but I'm so so thankful there is a treatment for his diagnosis.
If anyone is interested in reading up on my son's illness, it is called "Protein Losing Enteropathy - Post Fontan".
Please share the link below and help me keep this post at the top of the forum. Can't thank you all enough!

****On Monday August 3rd, cardiac surgeons placed a stent in my sons aorta. He is still at Childrens Hospital Los Angeles. He was almost out the door headed home yesterday but kept complaining of chest pain. Docs decided to do one more chest X-ray - and they saw huge pocket of fluid surrounding his left lung. Put him back in bed and started a new iv to get meds pushed to pull the fluid off his lung. He's resting comfortably now and hoping this mornings chest X-Ray will show improvement and I can take him home today....thanks for all the thoughts and prayers everyone, I truly believe it all helps!

http://www.gofundme.com/Miracle_Max?pc=

Max at CHLA072415 photo max chla_zpshe3fepga.jpg
The best use of Life is Love.
The best expression of Love is Time.
The best time to Love is Now.


I'm never as good as when you're there.........
Post edited by PJPixie on
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Comments

  • northerndragonnortherndragon Posts: 9,851
    PJPixie said:

    ....but I thought I'd stop by and share. I've shared this on Facebook where a lot of us have moved to - but for those that haven't, please please please continue reading....

    I've made some friends from this board that have CHD's (congestive heart disease) themselves or children with CHD's. My 15 year old son is a heart warrior (3 open heart surgeries) and is currently hospitalized with some complications....please take a moment to read/and or share/donate ❤️❤️ Thanks All!

    http://www.gofundme.com/Miracle_Max?pc=

    Sounds like we need another fund raising raffle. I'm crap at these things but we will get it sorted. Much love to both you and your son.
    Anything you lose from being honest
    You never really had to begin with.


    Sometimes it's not the song that makes you emotional it's the people and things that come to your mind when you hear it.
  • northerndragonnortherndragon Posts: 9,851
    bump
    Anything you lose from being honest
    You never really had to begin with.


    Sometimes it's not the song that makes you emotional it's the people and things that come to your mind when you hear it.
  • eeriepadaveeeriepadave West Chester, PA Posts: 41,768
    PJPixie said:

    ....but I thought I'd stop by and share. I've shared this on Facebook where a lot of us have moved to - but for those that haven't, please please please continue reading....

    I've made some friends from this board that have CHD's (congestive heart disease) themselves or children with CHD's. My 15 year old son is a heart warrior (3 open heart surgeries) and is currently hospitalized with some complications....please take a moment to read/and or share/donate ❤️❤️ Thanks All!

    http://www.gofundme.com/Miracle_Max?pc=

    :smile:

    8/28/98- Camden, NJ
    10/31/09- Philly
    5/21/10- NYC
    9/2/12- Philly, PA
    7/19/13- Wrigley
    10/19/13- Brooklyn, NY
    10/21/13- Philly, PA
    10/22/13- Philly, PA
    10/27/13- Baltimore, MD
    4/28/16- Philly, PA
    4/29/16- Philly, PA
    5/1/16- NYC
    5/2/16- NYC
    9/2/18- Boston, MA
    9/4/18- Boston, MA
    9/14/22- Camden, NJ
    9/7/24- Philly, PA
    9/9/24- Philly, PA
    Tres Mts.- 3/23/11- Philly. PA
    Eddie Vedder- 6/25/11- Philly, PA
    RNDM- 3/9/16- Philly, PA
  • PJPixiePJPixie Posts: 3,026
    Thank you! That would be wonderful!
    northerndragon said:

    PJPixie said:

    ....but I thought I'd stop by and share. I've shared this on Facebook where a lot of us have moved to - but for those that haven't, please please please continue reading....

    I've made some friends from this board that have CHD's (congestive heart disease) themselves or children with CHD's. My 15 year old son is a heart warrior (3 open heart surgeries) and is currently hospitalized with some complications....please take a moment to read/and or share/donate ❤️❤️ Thanks All!

    http://www.gofundme.com/Miracle_Max?pc=

    Sounds like we need another fund raising raffle. I'm crap at these things but we will get it sorted. Much love to both you and your son.
    That would be wonderful! Let me know what I can do to help!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJPixiePJPixie Posts: 3,026
    eeriepadave said:

    PJPixie said:

    ....but I thought I'd stop by and share. I've shared this on Facebook where a lot of us have moved to - but for those that haven't, please please please continue reading....

    I've made some friends from this board that have CHD's (congestive heart disease) themselves or children with CHD's. My 15 year old son is a heart warrior (3 open heart surgeries) and is currently hospitalized with some complications....please take a moment to read/and or share/donate ❤️❤️ Thanks All!

    http://www.gofundme.com/Miracle_Max?pc=

    :smile:

    Hi eeriepadave!!!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJPixiePJPixie Posts: 3,026
    northerndragon said:

    bump

    Thanks for the bump! I appreciate the help in keeping this up top.
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • SD48277SD48277 Posts: 12,243
    PJPixie! While it is great to see you, I wish it was under different circumstances. Will try to get a donation to you sometime this weekend. Much love to you and your son.
    ELITIST FUK
  • whispering handswhispering hands Posts: 13,527
    Hi Pixie! Long time no see.... I wish I had something to offer. But I don't but I will hel keep this thread at the top.
  • PJPixiePJPixie Posts: 3,026
    SD48277 said:

    PJPixie! While it is great to see you, I wish it was under different circumstances. Will try to get a donation to you sometime this weekend. Much love to you and your son.

    I love seeing these names, I need to come back more often!
    <3
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJPixiePJPixie Posts: 3,026
    whispering hands said:

    Hi Pixie! Long time no see.... I wish I had something to offer. But I don't but I will hel keep this thread at the top.

    Keeping this at the top will help, it's just like sharing! Thanks so much! I really need to come around here more!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • whispering handswhispering hands Posts: 13,527
    PJPixie said:

    whispering hands said:

    Hi Pixie! Long time no see.... I wish I had something to offer. But I don't but I will hel keep this thread at the top.

    Keeping this at the top will help, it's just like sharing! Thanks so much! I really need to come around here more!
    Yes you do, we miss you!
  • northerndragonnortherndragon Posts: 9,851
    Back to the front page.
    Anything you lose from being honest
    You never really had to begin with.


    Sometimes it's not the song that makes you emotional it's the people and things that come to your mind when you hear it.
  • PJPixiePJPixie Posts: 3,026
    SD48277 said:

    PJPixie! While it is great to see you, I wish it was under different circumstances. Will try to get a donation to you sometime this weekend. Much love to you and your son.

    Hello! Nice to see ya!

    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJPixiePJPixie Posts: 3,026
    northerndragon said:

    Back to the front page.

    Thank You!!!!!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • JWPearlJWPearl Posts: 19,893
    so sad children go through this in this present world for the time being :(
  • northerndragonnortherndragon Posts: 9,851
    Bump
    Anything you lose from being honest
    You never really had to begin with.


    Sometimes it's not the song that makes you emotional it's the people and things that come to your mind when you hear it.
  • SD48277SD48277 Posts: 12,243
    back to the front page
    ELITIST FUK
  • PJPixiePJPixie Posts: 3,026
    northerndragon said:

    Back to the front page.

    northerndragon said:

    Bump

    Danke!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJPixiePJPixie Posts: 3,026
    SD48277 said:

    back to the front page

    You guys are the best!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • SD48277SD48277 Posts: 12,243
    Bump for Max.
    ELITIST FUK
  • PJPixiePJPixie Posts: 3,026
    SD48277 said:

    Bump for Max.

    Thanks for the bump! I've been trying to get on here to update....
    Max at back at Childrens Hospital Los Angeles. His Cardiac Surgeons placed a stent in his aorta yesterday. He's recovering now, been kind of painful for him (I'm an emotional wreck but trying to be strong for him). He is one amazing kid. Thanks for all the love, thoughts, vibes and prayers...❤️❤️❤️ I'll try to post a pic later when I can actually get on a computer, not my phone
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PureandEasyPureandEasy Posts: 5,798
    Definitely remember the username, my thoughts and prayers for your son. I'll do what I can, God bless your family.
  • PJPixiePJPixie Posts: 3,026
    PureandEasy said:

    Definitely remember the username, my thoughts and prayers for your son. I'll do what I can, God bless your family.

    Thank you! I totally remember you!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJ_ROCKSPJ_ROCKS Posts: 6,736
    PJPixie, omg.

    i am sending good (((vibes))) to your son, you and your family.

    i wish seeing you on here was under better circumstances, because you are missed! but i do understand. Just know that you are in my thoughts...



    1995 San Francisco
              San Jose

              San Diego 2 shows 

           
    2003 Missoula

    2005 Missoula

    2006 Denver 2 shows with Tom Petty 

             Gorge 2 shows

    2009 Utah

              LA1

              LA2

    2012 Missoula : Meet and Greet : "Instant Classic show"

    2013 Portland

             Spokane


    2018 Missoula



  • PJPixiePJPixie Posts: 3,026
    edited August 2015
    PJ_ROCKS said:

    PJPixie, omg.

    i am sending good (((vibes))) to your son, you and your family.

    i wish seeing you on here was under better circumstances, because you are missed! but i do understand. Just know that you are in my thoughts...



    :):):) still here in the hospital...... Better and better each day!
    Post edited by PJPixie on
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJ_ROCKSPJ_ROCKS Posts: 6,736
    just thinking about you guys, hope all is good !

    1995 San Francisco
              San Jose

              San Diego 2 shows 

           
    2003 Missoula

    2005 Missoula

    2006 Denver 2 shows with Tom Petty 

             Gorge 2 shows

    2009 Utah

              LA1

              LA2

    2012 Missoula : Meet and Greet : "Instant Classic show"

    2013 Portland

             Spokane


    2018 Missoula



  • PJPixiePJPixie Posts: 3,026
    Hi PJ_ROCKS!!! So nice to hear from you. Things are currently being managed pretty well for Max's medical care. Max hasn't had to be re-admiited but we do spend a full day in/at Childrens Hospital Los Angeles every 2 weeks. He has to be infused with an element in his blood that his intestine is destroying. He has been responding very well to the infusions tho so that's good! Hope you are doing well :)<3
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • SD48277SD48277 Posts: 12,243
    Continued positive energy being sent your way!
    ELITIST FUK
  • PJPixiePJPixie Posts: 3,026
    SD48277 said:

    Continued positive energy being sent your way!

    Thank you!
    The best use of Life is Love.
    The best expression of Love is Time.
    The best time to Love is Now.


    I'm never as good as when you're there.........
  • PJ_ROCKSPJ_ROCKS Posts: 6,736
    glad to hear that Max is doing well. Sending good (((vibes))) to all of you !

    1995 San Francisco
              San Jose

              San Diego 2 shows 

           
    2003 Missoula

    2005 Missoula

    2006 Denver 2 shows with Tom Petty 

             Gorge 2 shows

    2009 Utah

              LA1

              LA2

    2012 Missoula : Meet and Greet : "Instant Classic show"

    2013 Portland

             Spokane


    2018 Missoula



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