feeling defeated

[weswife]

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]

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*.

 

[mommasita]

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.

 

[J'aime Paris]

Just found your thread.
My sincere wishes for healing for your beautiful DD!
You're a wonderful mom!

 

[PAsFab5]

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!

 

[marcyleecorgan]

No power on earth is stronger than love and you're filling her life with it

 

[weewuvvdisney]

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]

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]

Here she is on Christmas Eve.. all dressed up for Santa! She has a frozen 2 bow in her hair with a quote about the journey <3 she loved it!

 

[Haimia]

the photo

 

[weswife]

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

 

[StitchesGr8Fan]

Sending prayers of healing for her, and peace for you.

 

[PAsFab5]

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]

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

 

[fairygagamother]

Sending prayers for your precious daughter & the rest of your family.

 

[weewuvvdisney]

Sending you and your family big {{HUGS}}.

 

[WeatherLights]

Thinking about you and your family as you continue to face these challenges.

 

[lisaviolet]

weswife. You are all in my thoughts. Hoping for some better news soon.

 

[weswife]

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.

 

[Grumpy's Gal]