feeling defeated

weswife

DIS Veteran
Joined
Feb 15, 2009
Hello Friends, its a beautiful sunny warm day here today! My DD is feeling good, which makes me feel wonderful. Today is a bloodwork day but her regular nurse is off today so we moved the bloodwork until tomorrow.. They draw the blood from a port in her chest and only a few nurses are trained or feel comfortable. So an extra day to wait for results but I am ok with it because she looks great! The wound/ulcer is about the same so I will take that as a positive as its not worse. It seems to be at a stand still.... I will be glad when we can return to appointments with specialists to gain some insight. We have 1 more week of vinegar soaks and then we need a new care plan. This floating along gets tuff .... but the risk of the virus makes it understandable. Most importantly she is happy and able to enjoy her computer or cell phone :)
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Hello friends :)

I hope my post finds you doing well. My DD had another weekly blood labs, she is holding her own! The only worry is that darn CRP, it shows inflammation in the body. It should be 0 but today its showing 63 which is 8 points up from last week and 16 points in 2 weeks. I am not letting it get to me as I remember the plastic specialist telling me she can't be 0 with that big wound! So that makes sense but the specialists her relate an elevated CRP to be an indicator that the osteomyelitis is back. This can make my head spin and most of all my heart sink. The family doctor did a home visit today and will follow up with the surgeon as to what the next step should be. The wait is a killer as the mind never stops! Overall my DD looks well and no fever so I try to focus on that <3 We love her so much and wish this was over :(
We bought a 4 foot deep above ground pool in hopes of her being able to enjoy! She can't be submerged in water but if we wrap the wound hopefully she can be put in a dingy boat to float! She spent the entire summer in the hospital last year so I want her to enjoy the beautiful days this year!
I can't help feeling a bit down today. Hearing what the family doctor said as the wound has good points and bad. In closing remarks she did say the would has not gotten worse so I have to replay that in my head!
 


butterscotchcollins

Drop Chicken
Joined
Jul 12, 2019
Focus on the positive! I also wish this was over for you guys, like, tomorrow, but know that every day is a step towards progress and healing :) Sounds like she is going to be quite the sunning beauty this summer on her float - don't forget the sunscreen!
 
  • mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I agree, try and focus on the positive.
    The pool sounds wonderful, she can always get a nice hat and be the captain of her ship 😀. Hoping for sunny days and good news. Love and light my friend 🌈❤
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Focus on the positive! I also wish this was over for you guys, like, tomorrow, but know that every day is a step towards progress and healing :) Sounds like she is going to be quite the sunning beauty this summer on her float - don't forget the sunscreen!
    Thanks for the reply. Yes its been a long journey that we want an end. I am beside my self working another area is opening and possibly another ulcer. I am almost out of my mind. Still waiting on a reply from the doctor as to what the next steps will be. Haha she is so excited about the pool!
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    I agree, try and focus on the positive.
    The pool sounds wonderful, she can always get a nice hat and be the captain of her ship 😀. Hoping for sunny days and good news. Love and light my friend 🌈❤
    Yes trying to stay positive <3 wish I could turn the mind off. Today was nice, my son is home on a day off. He went out early and got breakfast for all of us, it was a great treat! We hung out together at home <3 I canceled DD nursing visit and done her wound care with the help of my son <3 It was a great day just the 3 of us!
    Oh how she would love to be the captain of her own ship!
     

    lovemygoofy

    DIS Veteran
    Joined
    Jun 9, 2004
    I'm always in awe of a mother and her determination and love. This thread is inspiring. I still continue to keep you all in my thoughts and prayers. There is super cute floaties that are shaped like unicorns or other fun shapes that is big and she might enjoy that as way to be out on the water without getting water in any area she shouldn't.
     
  • mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Hi, I’ve been thinking of you @weswife , and your family, especially your daughter

    Hope you are just too busy, and all is well. 🌈❤
    it’s been like 40 with the humidex this week, so I’m doing my housework and I’m in my pool by 11. Lol. Such a heatwave, but I love it.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello,

    We have been having a heat wave as well. Thanks for reaching out and continuing to cheer us on <3

    My DD took a few steps backwards, which has been a worry. The wound has stoped healing. So the doctor is trying to decide how to get it moving again. They have switched up the dressing care. Last week the surgeon cut a few sections away to give it a boost! She figures the tissue is dead in areas so maybe by removing it, the wound will reboot so to speak. We have not been to the plastic surgeon since early march because of covid. The ulcer has a few tunnels and thats a mystery as to why its tunnelling, she feels its a possible infection. We will never be truly clear of the infection as it got into the pelvis, they would have to remove 1/2 of the pelvis to clear it but thats entirely too RISKY! I never knew this ulcer/wound would rule our lives! It calls the shots on EVERYTHING we do!

    On a happier note... We got an above ground pool installed! We are still working on redoing our backyard, thats another story .. lol

    We have had our DD in a small boat in the pool and she loves it! She loves spraying her family with the garden hose too!!!! I love seeing her smile and laugh, it makes me forget. On Monday we are going to the city! We can finally get her new insert for her wheelchair! We have been waiting for a year! Its custom made so it will help her when sitting and hopefully relieve some pressure allowing her to sit longer! We are also testing a new tilt chair! We plan to buy that next if it helps her!

    Wow.. I had a long post :)
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Sorry to hear about the steps backwards. HOPE with all power that the infection can be stopped and rebooted. 🙏

    I am smiling thinking of your daughter hosing the family 😀. Good times for sure. It seems like you will all have a lovely summer.

    As always, I pray so so strongly for healing. 🌈❤
     
  • weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello,
    A little update on my DD. She went to see the surgeon today for a follow up from last week. The surgeon removed another small section from the wound but was pleased with the top area! Finally some positivity! Worried about the section she removed but there seems to be a lot of blood, so this means healthy tissue! Hopefully it will get the reboot it needs to move forward..... again.

    Yesterday we went to the city to see about her wheelchair . The new insert was finally ready! After a long wait of 15 months ... She is sitting so much better! This new insert will relieve the pressure on her pelvis allowing it to heal. We also ordered a new wheelchair!!!! This is super exciting!!!!! The new chair has a tilt feature, this will allow her to reposition but stay in the chair. Plus relieve the pressure on the pelvis! What a win!!!!! Of course it comes with a price tag ... just under $9000 when all competed! Yup got all the bells and whistles :)

    Feeling positive today! I THANK each of you that took time to reply and knowing we had people cheering us on <3
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Such wonderful news all around. 😍 I love hearing it . Sorry about the cost, but yeah on everything else.
    Wishing you all a Happy 🇨🇦 Canada Day !
     

    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    @weswife I'm a little delayed checking in, but so glad to hear your good news! I hope the new insert as well as the new wheelchair will provide her a more comfortable position as well as help with the healing. So happy to hear she's having fun with the hose and the pool! Your post was just the kind of good news I needed to read today. Thank you for sharing. :cool1:
     





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