feeling defeated

weswife

DIS Veteran
Joined
Feb 15, 2009
I hope everyone enjoyed the holidays! We had a fabulous Christmas! It was wonderful to have our DD home and feeling well. So thankful to have nursing care available at home as its the only way she can be with us <3 Now the countdown is on for IV meds to stop on Sat. Having said that it is actually bitter sweet, right now the IV protects her. She will then start meds by mouth on Sunday! The vac dressing has been applied, now to see if it will do the healing job on the ulcer. Back to the surgeon Tues for follow up and understanding what is going on with the pelvis. I also now have to decide if I will return to work. My leave is over next week so thats a big decision. I will not risk her health for a job or money. Major decision! Thanks for all the support, I sure do get a lot of comfort from it.
 

lisaviolet

DIS Veteran
Joined
Jul 9, 2002
Thinking of you weswife.

I was away and was hoping I would come back on to some positive news for your daughter, for you all.

Hope you all are doing *okay*. :hug:
 

mommasita

DIS VETERAN
Moderator
Joined
Aug 3, 2004
I’m glad to hear you all had a fabulous Xmas.

we no longer celebrate. I’m in Florida, we have guests at the moment, so not online as much, continued good thoughts.
 

PAsFab5

Mouseketeer
Joined
May 12, 2017
I just found your thread and I am sending positives thoughts to your family and healing prayers for your daughter! I will be following along for updates on her. Happy New Year to you and yours family!
 

weewuvvdisney

DIS Veteran
Joined
Jun 14, 2008
Sending you and your family best wishes that 2020 will be a year filled with Disney trips, love and most of all health & happiness.
 
  • weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello, thanks for all the beautiful replies. My DD has now been off the IV for a week, her bloodwork last Mon started to creep up :( Tomorrow is a full round of bloodwork so fingers crossed and praying hard for stable numbers. Also vac dressing change, have not seen the ulcer since Fri., so prating for positive movement there too! All she talks about is returning to Disney! This definetly keeps her spirits up <3 My heart is so heavy, the wishing she was well <3 She has a long journey yet but I will keep pushing. Back to the city plastic surgeon on the 16 and wheelchair seating specialists on the 24. Her pelvis has shifted from the osteomyelitis so sitting has become difficult and thats what she does so we need to improve that! I read a quote a while back... its hard to live in a body trying to destroy you from the inside out ... this is my daughter <3 it hit me hard when I read it.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello All,
    I am feeling down today. her blood work is trending toward infection ( again) yesterday all the numbers were elevated. My heart is breaking and my mind is full of worry. Overall she still looks great! She is happy and currently enjoying a disney cruise video on youtube. Her wound is about the same so not much improvement there. Back for a follow up with the surgeon next week and plastics in the city Wednesday! I know being blindsided would not be good either but if we were not doing weekly labs I would not know her levels and not be worried. I know the risk is there but looking at her calms me as she looks so good! This is the most difficult journey we have ever been on .. thanks for all the support <3
     
  • PAsFab5

    Mouseketeer
    Joined
    May 12, 2017
    Hello All,
    I am feeling down today. her blood work is trending toward infection ( again) yesterday all the numbers were elevated. My heart is breaking and my mind is full of worry. Overall she still looks great! She is happy and currently enjoying a disney cruise video on youtube. Her wound is about the same so not much improvement there. Back for a follow up with the surgeon next week and plastics in the city Wednesday! I know being blindsided would not be good either but if we were not doing weekly labs I would not know her levels and not be worried. I know the risk is there but looking at her calms me as she looks so good! This is the most difficult journey we have ever been on .. thanks for all the support <3
    I am so sorry to hear this. Please keep us updated.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    We went to the plastic surgeon today and it was the visit we had hoped for. He said the wound has good points and bad. Having said that one area looks good! The deepest section that we thought was closing actually is 6 cm deep and seems to have a hidden pocket. This is a major set back.My heart is breaking and my mind fills with worry. He said he is concerned today, which is the 1st time since May when this originally started. The vac dressing has been stopped and a new medicated dressing is being applied daily. Please say a little prayer this tunnelling does not become worse. On our road trip she talked about a trip to Disney, my heart cracks listening and thinking she may not ever go again. I will watch each dressing change like a hawk. We love her so much <3
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello, We had a ton of snow here this weekend! WOW!!! Tomorrow begins a new week, blood work Monday. Waiting to see if the numbers is difficult. We know she has had a major set back so we pray the blood report is stable. This is a difficult journey to understand and my mind fills with worry. My hear is breaking. Today she is watching her youtube Disney videos and telling me about updates. She still talks about going ... for now 1 day at a time .. Thanks for all the comments this has greatly helped me.
     


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