feeling defeated

weswife

DIS Veteran
Joined
Feb 15, 2009
Hello, We have been missing in action for a bit. My DD's weekly blood labs from Monday were not great. On Tues the swab showed an infection. On Tues our family doc called and reviewed all her levels with me and requested Shavonne be admitted. My heart was broken but the doctor was scared she was crashing. I was worried sick. My husband drove us to the hospital as the doctor wanted to send an ambulance but we didn't want the fuss. When we arrived to the hospital my husband was not permitted inside. I had a special authorization from our doctor to accompany her, which I was very thankful for. Family doc met us at Emerg and accessed her. She was relieved to see her looking well, he actual words... she looks damn good! I said yes she does lol... Anyway she admitted her upstairs to be monitored and start treatments. Her electrolytes , potassium, magnesium , albumin and pre albumin were all beyond low levels. She explained all of her concerns and I cried. I stayed with her until she was settled around 10:30 pm that night. I went home and she FaceTime us a few times, so happy she got that phone for her b-day! Around midnight she called and said she was homesick and wanted to go home. I calmed her down. I went back for 8 am and she was doing better! We final got home last night , they knew our goal was HOME! lol She is now on IV meds for 2 weeks and doing vinegar soaks 2 times a day in the wound/ulcer. The infection HATES vinegar! So I am praying the next 2 weeks it takes a hike and we try to get the wound moving again! Overall she is looking good and we are happy to be home <3
 


  • mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    @weswife Oh what a rough week, poor you guys. I’m glad safe was treated, and I hope this can make A big difference. What stressful times it must have been.

    Happy Shavonnre is home (what a fantastic name btw), and she heals, and you both get the rest you need and deserve.
    ❤
    .
     

    theluckyrabbit

    Moderator
    Moderator
    Joined
    Jul 23, 2012
    Being back home is great news! And all that love is some of the best medicine in the world for your DD. So glad she was able to get the extra care and treatment she needed.
     
  • weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Thank you for cheering us on! <3 I take great comfort and strength from this group <3 Yes its been a difficult week but we are making progress according to this week's blood labs. The ulcer/wound it self looks clean so thats positive! The not positive is the ulcer is getting deeper in the centre which is dangerous :( The tunnels are another concern, as they are hidden under the skin making trouble. Yesterday was a milestone day, it was 1 year ago since we flew home from Disney. We noticed that day she was starting to look sick but had no idea what a journey it would be. On may 13, 2019 she was admitted to ICU and her journey began. I am beyond thankful to have my beautiful daughter <3 . Thanks for the kind comment about her name! My husband loved the name and changed the spelling Siobohan to Shavonne! Trying to make it easy :) Now the wait for this week's blood lab results!
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I’m sorry I’m so late, personal issues, now hopefully resolved 🙏

    I took an extra long browse through your thread at your Dds pictures. Such a beauty 😍. How are things ?
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    I’m sorry I’m so late, personal issues, now hopefully resolved 🙏

    I took an extra long browse through your thread at your Dds pictures. Such a beauty 😍. How are things ?
    Hi, I hope life has settled down for you <3 hugs

    Today is another round of full bloodwork but no results until tomorrow. The IV meds will be completed tomorrow morning so the count down is on!!!! Fingers crossed <3

    Now to get this ulcer/wound to start moving again! I plan to touch base with the surgeon on Wednesday and see what the care plan will be. Hopefully the ulcer will start to clear. Shavonne is so focused on a Disney Christmas trip!!!! This was a promise made way back in May 2019! I did book our DVC, feeling so nervous! I actually believe it helps her heal.

    Wishing everyone a fabulous day! Thanks for the kind comments xo
     
  • mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Hi, I hope life has settled down for you <3 hugs

    Today is another round of full bloodwork but no results until tomorrow. The IV meds will be completed tomorrow morning so the count down is on!!!! Fingers crossed <3

    Now to get this ulcer/wound to start moving again! I plan to touch base with the surgeon on Wednesday and see what the care plan will be. Hopefully the ulcer will start to clear. Shavonne is so focused on a Disney Christmas trip!!!! This was a promise made way back in May 2019! I did book our DVC, feeling so nervous! I actually believe it helps her heal.

    Wishing everyone a fabulous day! Thanks for the kind comments xo
    thank you 👩‍❤️‍💋‍👩

    Hoping all goes well, and it starts to clear.

    i hope beyond hope the trip will happen, it’s sooo good to have this dream and goal to get us through, especially children when they aren’t well. Baby steps to get there, one day at a time. 🙏🌈
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Fingers crossed for good news tomorrow! :yay: What is Shavonne looking forward to most about returning to Disney?

    Shavonne LOVES all of Disney but Magic Kingdom is her favourite! She LOVES characters! She talks non stop about all the plans she has and I pray it will happen! Being told this time last year she would never travel again and more then likely lose her life... makes me shutter. I want her to be able to enjoy a trip and its kept her spirit so high! <3
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello Friends,

    We are on a life high today! Shavonne just finished her final does of IV meds for this round. Her blood labs are looking better! Now to get a wound/ulcer care plan in place. I have reached out to the doctor and the surgeon trying to get a new plan. Tonight we can return to our normal as we will not need a night visit from the nurse as I can do the wound care myself! Ahhh it feels good :) I just want a magic wand to wave and get this ulcer moving forward again! It consumes our life .. decides what we will do. I am feeling a little bit of positivity even though the nurses are cautioning me ... I need that hopeful feeling. <3 we love her so much! We want that healing sooo bad ...

    I also got an email update ... I had applied for a new position and got hired but when covid19 happened everything got put on hold. Well today I got invited to a meeting that looks promising. This makes me feel even better! Although I have greatly enjoyed being home to care for my little lady <3

    What a great day! I hope each of YOU are having a fabulous day as well <3
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Here are 2 pics of my sweet girl. She is wearing a special mask my cousin made for her, it has a disney look of course! Next pic is the day we were leaving the hospital <3
     





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