feeling defeated

lovemygoofy

DIS Veteran
Joined
Jun 9, 2004
Hello friends,

Sorry I have been missing for a bit. I did start a new job, which is exciting! Unfortunately my DD spent the last 3 weeks in the hospital :( she had a very high fever! Her blood work showed she was going septic. She was admitted and they found she had a major infection that was travelling around her body. She ended up on 4 IV meds and the fever would not leave. Finally on week 2 it left! She has now been reduced to 1 IV med. Luckly she did test negative for COVID! That was super scary! We decided to push for home again <3 So we are now home! We have VON nursing visits daily to administer her IV treatment and change the dressing daily. The wound is improving slowly .. but no worse! We love our little lady so much... if you can please keep her in your prayers. She is not out of the woods yet .. but we keep pushing! We have decided to cancel our Christmas Disney trip but have rebooked for April, the last week :)

I'm still praying for you and your family. You determination and love shines through. Your daughter obviously has your fighting and loving spirit. I will continue to keep you all in my thoughts and prayers. What a celebration your next April will be!
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Thanks for all the wonderful replies <3 it really helps! We just had her nursing visit so the IV is done for tonight. We decided to order out as its getting late. We LOVE having her home, it takes a bit of planning. She is a trooper! Her bloodwork is improving so that makes me feel positive! She had a full round yesterday. As parents we will never give up.. her siblings are so devoted to her and that makes my heart bust <3 Yes the count down for April is on, disappointed for no Christmas trip. On the positive side... April is her b-day month! Plus we ordered a new wheelchair with special features that will reduce the ulcer pressure so we should have it by then :)
 

RogueX

DIS Veteran
Joined
Aug 21, 2019
Sorry to hear of her hospitalization, but glad that she's recovering at home. Stay strong and positive.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Hello All,

I wanted to check in. Its been a busy few weeks! Last week's blood work was looking fantastic!!!! Today is a new round <3 so fingers are crossed. I myself went for blood work at my doctor's request, so we shall see.
My DD is looking great and enjoying YouTube blogs daily. I love listening to her plan a trip <3 It sure makes the day happier! The wound is slowing progressing. We are in a much better place then this time last year and I am beyond THANKFUL for that <3 Still waiting on some follow up appointments so we continue to float along. Nursing visits are daily to keep an eye on the wound.
I am loving my new job! I am so happy I decided to leave that company. I am feeling much better emotionally and no stress. Imagine 20 years ... I have to see it as a positive in my DD illness. Had I never taken a leave and thought... I NEVER would have left my position. It has turned out to be the best move!

I hope all of you are well and safe.. take care
 

butterscotchcollins

Drop Chicken
Joined
Jul 12, 2019
Hello All,

I wanted to check in. Its been a busy few weeks! Last week's blood work was looking fantastic!!!! Today is a new round <3 so fingers are crossed. I myself went for blood work at my doctor's request, so we shall see.
My DD is looking great and enjoying YouTube blogs daily. I love listening to her plan a trip <3 It sure makes the day happier! The wound is slowing progressing. We are in a much better place then this time last year and I am beyond THANKFUL for that <3 Still waiting on some follow up appointments so we continue to float along. Nursing visits are daily to keep an eye on the wound.
I am loving my new job! I am so happy I decided to leave that company. I am feeling much better emotionally and no stress. Imagine 20 years ... I have to see it as a positive in my DD illness. Had I never taken a leave and thought... I NEVER would have left my position. It has turned out to be the best move!

I hope all of you are well and safe.. take care
So happy to hear that things are going well! Plenty of prayers still for you guys and looking forward to hearing all about your April planning ;)
 

theluckyrabbit

DIS Veteran
Joined
Jul 23, 2012
Hello All,

I wanted to check in. Its been a busy few weeks! Last week's blood work was looking fantastic!!!! Today is a new round <3 so fingers are crossed. I myself went for blood work at my doctor's request, so we shall see.
My DD is looking great and enjoying YouTube blogs daily. I love listening to her plan a trip <3 It sure makes the day happier! The wound is slowing progressing. We are in a much better place then this time last year and I am beyond THANKFUL for that <3 Still waiting on some follow up appointments so we continue to float along. Nursing visits are daily to keep an eye on the wound.
I am loving my new job! I am so happy I decided to leave that company. I am feeling much better emotionally and no stress. Imagine 20 years ... I have to see it as a positive in my DD illness. Had I never taken a leave and thought... I NEVER would have left my position. It has turned out to be the best move!

I hope all of you are well and safe.. take care
Such good news and so encouraging to hear about both you and your DD! :)
 
  • weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Another round of blood work and the numbers are holding steady! YES ... finally! The wound is still open and deep but we keep dressing it. Taking care of it every day 2 times a day. It takes dedication but seeing her sweet smiling face <3 I love how she watches youtube videos and talks about her next vacation. This warms my heart and we pray she gets to go! feeling upbeat this week <3
     

    butterscotchcollins

    Drop Chicken
    Joined
    Jul 12, 2019
    Another round of blood work and the numbers are holding steady! YES ... finally! The wound is still open and deep but we keep dressing it. Taking care of it every day 2 times a day. It takes dedication but seeing her sweet smiling face <3 I love how she watches youtube videos and talks about her next vacation. This warms my heart and we pray she gets to go! feeling upbeat this week <3
    Yay!!! 🥳🥳🥳 Praying for you guys!
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I’m sorry I haven’t checked in @weswife. How is your daughter, how are you and your family doing ? Thinking often you so often lately ❤🌈
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    I’m sorry I haven’t checked in @weswife. How is your daughter, how are you and your family doing ? Thinking often you so often lately ❤🌈
    Hello,

    We are floating along still at home! Her ulcer is still wide open and we are trying our best to prevent it from getting worse. We went to the surgeon last weekend she is concerned about the drainage. She plans to swab it again on Monday, hopefully its nothing. She is also considering removing a section as its boggy. So thats another issue as it will open the wound more :( Still so many issues but trying to be positive. I was so happy to have her home for the holidays and still home <3 I still have hard days and the worry can consume me but I try to push forward <3

    I hope you are doing well
     
  • lisaviolet

    DIS Veteran
    Joined
    Jul 9, 2002
    Still so many issues but trying to be positive. I was so happy to have her home for the holidays and still home <3 I still have hard days and the worry can consume me but I try to push forward <
    Weswife, please remember that you need a soft place to have your feelings. I know how utterly frustrating the ups and downs of ongoing medical care can be. And how wound care can take the mind so many places.

    It is okay, and I believe beneficial, to simply take some time to fall into these frustrations - whatever that looks like for you. That release might even give you more focus and energy.

    Love sent to your entire family.

    Happy New Year.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Weswife, please remember that you need a soft place to have your feelings. I know how utterly frustrating the ups and downs of ongoing medical care can be. And how wound care can take the mind so many places.

    It is okay, and I believe beneficial, to simply take some time to fall into these frustrations - whatever that looks like for you. That release might even give you more focus and energy.

    Love sent to your entire family.

    Happy New Year.
    Thank you ... this has been a journey but I am thankful for each day! My heart breaks when I let my mind run away. I am trying so hard not to that .. I love my little lady so much <3
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Hello,

    We are floating along still at home! Her ulcer is still wide open and we are trying our best to prevent it from getting worse. We went to the surgeon last weekend she is concerned about the drainage. She plans to swab it again on Monday, hopefully its nothing. She is also considering removing a section as its boggy. So thats another issue as it will open the wound more :( Still so many issues but trying to be positive. I was so happy to have her home for the holidays and still home <3 I still have hard days and the worry can consume me but I try to push forward <3

    I hope you are doing well
    I will keep you all in positive thoughts and prayers 🌈. It can not be easy on you. 👩‍❤️‍💋‍👩
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Today was a busy day for us. She got another full round of blood work and it will be back tomorrow. The nurse had a good look at the ulcer/wound today and the tunnels, it appears to be stable. Now if the outside area would simmer down, its fire engine red!!! Of course they are concerned there is an infection brewing. The surgeon called and requested a swab to check for infection. I now sit on pins and needles waiting for results! The swab will likely be back Thursday ..... please let all of her tests be ok
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I pray they are. I hope she is not in too much pain, when I read fire engine red, I thought poor thing, it must be painful. ☹. You all are due for positive news. Prayers sent, lots my friend. 🙏🌈
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    hello,

    Well after contacting the family doctor she suggested a few new ideas. She started her on a new antibiotics and we are now using a puffer on the skin.. it actually seems to be responding! Her blood work for the week has improved! Oh how happy we feel tonight. We have a follow up with the surgeon next week. If all is still moving well they are considering a vac machine to see if the wound can be closed! The wound still has a deep tunnel so that is making trouble .. hopefully we can get that to fill in.

    My DD has been a trooper!!!! I pray some day we will be able to take her back to DISNEY!!!!!
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    hello,

    Well after contacting the family doctor she suggested a few new ideas. She started her on a new antibiotics and we are now using a puffer on the skin.. it actually seems to be responding! Her blood work for the week has improved! Oh how happy we feel tonight. We have a follow up with the surgeon next week. If all is still moving well they are considering a vac machine to see if the wound can be closed! The wound still has a deep tunnel so that is making trouble .. hopefully we can get that to fill in.

    My DD has been a trooper!!!! I pray some day we will be able to take her back to DISNEY!!!!!
    Oh how I love reading this!!
    What wonderful news☘. I’m so overjoyed for your daughter and your family. 😀. Praying for more good news with the surgeon next week.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello friends,

    We went for an appointment with the surgeon today. The original wound is getting smaller which is positive! It still has a deep tunnel but hopefully it will start filling in. The bottom wound is getting bigger on the surface but not deeper so thats a bit positive. The good news is the surgeon did tell us she suspects the wound will close at some point! This is great .. something we have wanted to hear!!!! The biggest issue now is the skin around the wound as its angry!!! We have been battling it for a few weeks now :( The surgeon suspects some kind of infection is living on the skin so we are starting a new ointment tonight! Her round of oral antibiotics are finished. This wound sure rules our life <3
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Hello friends,

    We went for an appointment with the surgeon today. The original wound is getting smaller which is positive! It still has a deep tunnel but hopefully it will start filling in. The bottom wound is getting bigger on the surface but not deeper so thats a bit positive. The good news is the surgeon did tell us she suspects the wound will close at some point! This is great .. something we have wanted to hear!!!! The biggest issue now is the skin around the wound as its angry!!! We have been battling it for a few weeks now :( The surgeon suspects some kind of infection is living on the skin so we are starting a new ointment tonight! Her round of oral antibiotics are finished. This wound sure rules our life <3
    Glad to hear that wound is getting smaller!
    great news to hear that it will close😀

    on to the skin, I hope and pray the ointment can treat that easily. You all have certainly had that rule your lives, you need a reprieve. God bless 🙏❤
     


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