feeling defeated

alohamom

DIS Veteran
Joined
Oct 31, 2003
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!!!!
That is wonderful news!
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Hi,

I hope all of you are doing well <3 We are all safe!

My DD is moving along! We are still trying to get the new ointment and medicine for the outer area of the wound. Its been almost 2 weeks, the pharmacist is working on the formula but all resources have refused coverage and its extremely expensive. Its really frustrating considering she needs it and this ulcer almost took her life! I continue to battle and get it covered. I must say I am feeling proud of the way its looking! I have been using the products I have at home and it has not gotten worse. I will take that as a MOM win!!! My DD continues to dream of Disney and I swear it keeps her motivated to wellness <3 I hope/pray someday we can return! When this nightmare originally started the doctors told us she would pass away and NEVER travel again. Encouraged us to stop treatment and let her go. Just typing that breaks my heart. Actually encouraged us to sell our DVC points! It sure has been one heck of a journey!!!!! I love seeing her sweet face everyday <3 Her siblings have been absolutely amazing in the help they have provided in caring for her <3 I make sure to remind them just how proud I am <3

Thanks for all the support and allowing me to vent. I appreciate it more then you will ever know! Another round of full blood work tomorrow. Its hard to believe we have been doing weekly blood work since Sept 2019! I hope at some point she can move away from that .. the weekly blood work rules our lives!
 

mommasita

DIS VETERAN
Moderator
Joined
Aug 3, 2004
Hi,

I hope all of you are doing well <3 We are all safe!

My DD is moving along! We are still trying to get the new ointment and medicine for the outer area of the wound. Its been almost 2 weeks, the pharmacist is working on the formula but all resources have refused coverage and its extremely expensive. Its really frustrating considering she needs it and this ulcer almost took her life! I continue to battle and get it covered. I must say I am feeling proud of the way its looking! I have been using the products I have at home and it has not gotten worse. I will take that as a MOM win!!! My DD continues to dream of Disney and I swear it keeps her motivated to wellness <3 I hope/pray someday we can return! When this nightmare originally started the doctors told us she would pass away and NEVER travel again. Encouraged us to stop treatment and let her go. Just typing that breaks my heart. Actually encouraged us to sell our DVC points! It sure has been one heck of a journey!!!!! I love seeing her sweet face everyday <3 Her siblings have been absolutely amazing in the help they have provided in caring for her <3 I make sure to remind them just how proud I am <3

Thanks for all the support and allowing me to vent. I appreciate it more then you will ever know! Another round of full blood work tomorrow. Its hard to believe we have been doing weekly blood work since Sept 2019! I hope at some point she can move away from that .. the weekly blood work rules our lives!
HI there !

ugh, how frustrating that must be. I hope they get that formula worked out quickly for your daughter and yourself. What a horrible journey you all have been through. 😥. I’m so glad to read the positive updates. This is a wonderful forum for it. ❤ I think often of your sweet family. I can’t wait to see pictures of you all in Disney post COVID. 👩‍❤️‍💋‍👩

Lots of love going out, especially to Mom and daughter. 🌈❤
 

lovemygoofy

DIS Veteran
Joined
Jun 9, 2004
Hi,

I hope all of you are doing well <3 We are all safe!

My DD is moving along! We are still trying to get the new ointment and medicine for the outer area of the wound. Its been almost 2 weeks, the pharmacist is working on the formula but all resources have refused coverage and its extremely expensive. Its really frustrating considering she needs it and this ulcer almost took her life! I continue to battle and get it covered. I must say I am feeling proud of the way its looking! I have been using the products I have at home and it has not gotten worse. I will take that as a MOM win!!! My DD continues to dream of Disney and I swear it keeps her motivated to wellness <3 I hope/pray someday we can return! When this nightmare originally started the doctors told us she would pass away and NEVER travel again. Encouraged us to stop treatment and let her go. Just typing that breaks my heart. Actually encouraged us to sell our DVC points! It sure has been one heck of a journey!!!!! I love seeing her sweet face everyday <3 Her siblings have been absolutely amazing in the help they have provided in caring for her <3 I make sure to remind them just how proud I am <3

Thanks for all the support and allowing me to vent. I appreciate it more then you will ever know! Another round of full blood work tomorrow. Its hard to believe we have been doing weekly blood work since Sept 2019! I hope at some point she can move away from that .. the weekly blood work rules our lives!
I'm always in awe of a mother's love and determination. You are such example of strength and courage and your daughter is too! I continue to pray for you all and so happy to hear things are going as well as possible. I hope that you can get the medicine needed for your daughter. I hate that you have to go through so much for something that is needed.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
I know I have not been posting for a bit. So busy with my job and caring for my DD! Add some nightly nursing care and its a full day.

My DD spiked a high fever Feb 4 and was admitted to ICU. She has an infection and have since developed pneumonia . She finally got transferred to the 4 th floor but only stayed 1 night. She was transferred back to ICU for 6 days and is now back on the 4th floor.
Her temp is going up and down. The doctors have been changing her IV meds. Last night she took another high fever and her heart was racing. The hospital called us at 2 am to update us about her condition. She is septic. She also has pneumonia in 2 places in her lung. I am so upset.

Please keep her in your prayers. We are so worried about our beautiful sweet DD
 

mommasita

DIS VETERAN
Moderator
Joined
Aug 3, 2004
I know I have not been posting for a bit. So busy with my job and caring for my DD! Add some nightly nursing care and its a full day.

My DD spiked a high fever Feb 4 and was admitted to ICU. She has an infection and have since developed pneumonia . She finally got transferred to the 4 th floor but only stayed 1 night. She was transferred back to ICU for 6 days and is now back on the 4th floor.
Her temp is going up and down. The doctors have been changing her IV meds. Last night she took another high fever and her heart was racing. The hospital called us at 2 am to update us about her condition. She is septic. She also has pneumonia in 2 places in her lung. I am so upset.

Please keep her in your prayers. We are so worried about our beautiful sweet DD
I will pray continuously for your DD and your family, 🙏 if you need an ear, or anything, please don’t hesitate.
 
  • BaymaxForever

    The amulet is green...it’s probably an emerald...
    Joined
    Oct 3, 2016
    Prayers for strength, comfort and healing and sending love to your daughter, you and your family.
     



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