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.
     

    Haimia

    Mouseketeer
    Joined
    Jan 28, 2010
    So sorry to hear this. Keeping your DD and family in my thoughts and prayers. Please update when you can!
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello, I greatly appreciate all the prayers and replies. My DD came home on Friday and we are so happy! She is still battling pneumonia but taking antibiotics at home <3 She is amazing! Its been an extremely difficult week for our family. My husband's mom took a massive heart attack on Monday and went on life support. Due to covid only 2 visitors were permitted. On Monday night at 11 pm we got the call to say good-bye to her. My husband and I went to the hospital, his dad, sister and brother were there as well. Doctors explained she would most likely pass away and it was only the life support keeping her alive at that point, she never regained conciseness . His Dad asked to keep her alive supported until 8 am in hopes she would improve. We sat with her all night taking turns 2 at a time. At 8 am on Tues she was removed from life support. She passed shortly after. It has been a complete shock! She was on the computer and collapsed, not sick at all. She was 79 years old. The doctors discharged our DD to go to the funeral and set up nursing care at home so she can remain home. Its been a long week. You never know how quick your life can change .. tell your loved ones you love them every day <3
     
  • mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I am happy to hear your daughter is home and recuperating. 🙏 Continued prayers that the pneumonia clears up and she continues to heal. You all have been in my prayers, I can’t even begin to explain how often.

    I am saddened to hear about your MIL, condolences to your entire family. Life is so precious, you are very right, it can change in the blink of an eye.

    Please take some time to catch your breath a little, I send you love ❤
     

    Haimia

    Mouseketeer
    Joined
    Jan 28, 2010
    So glad to hear your DD has improved and is home. You all have my sympathy in regards to your DMIL. I hope knowing she had a long, full life helps a bit at this time!
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Thank you for the replies. Our lives are slowly falling into a new normal . My DD had her full round of blood work on Monday and its improving! She is finished 1 round of antibiotics today , so that is progress. Her breathing is improving and her respirations have slowed down, thankfully.
    My father-in-law is doing as good as we can expect, same as my husband. Starting this week we are having his dad and brother for supper once a week. This should help them, as they live together. So tomorrow I am off, I will bake a few things too!
    I forgot to mention, my DS wrote and presented the most beautiful tribute to his g-ma at her funeral. It was beautiful <3
    Geezz life is a rollercoaster.
     

    lisaviolet

    DIS Veteran
    Joined
    Jul 9, 2002
    I am feeling proud of the way its looking!
    You should be very proud. Pressure sores are such an emotional rollercoaster to deal with, especially long term.

    ----------

    I so very sorry to hear about the loss of your mother-in-law. Relieved to read that the hospital allowed proper visitation for you all.

    Also very sorry to read about your scare with your daughter. What a trooper she is! Sepsis and everything. She's a powerhouse. And a cute one at that! (All this time and I just realized her age!)

    Very happy to read that she is at home and has some positive test results.

    Just in case, I also wanted to share that with the aggressive rounds of antibiotics it is important to watch her gut health.

    You are all in my thoughts and I am praying for a continuation of positive results.
     
    Last edited:

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    You should be very proud. Pressure sores are such an emotional rollercoaster to deal with, especially long term.

    ----------

    I so very sorry to hear about the loss of your mother-in-law. Relieved to read that the hospital allowed proper visitation for you all.

    Also very sorry to read about your scare with your daughter. What a trooper she is! Sepsis and everything. She's a powerhouse. And a cute one at that! (All this time and I just realized her age!)

    Very happy to read that she is at home and has some positive test results.

    Just in case, I also wanted to share that with the aggressive rounds of antibiotics it is important to watch her gut health.

    You are all in my thoughts and I am praying for a continuation of positive results.
    Thank you :)

    Yes, this pressure sore has been ruling our lives! I have taken pictures of it since the beginning and to see how far she has come is amazing! We are off to see another specialist on Wed.

    She recently celebrated her 28th birthday!
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello,

    We are still floating along <3 I hope all is well with everyone! My DD celebrated her 28th birthday last Tues and it was amazing! She had a FROZEN cake we had made for her. She loved all the attention and the presents .. lol ... We were over the moon to celebrate her special day <3

    Now to talk about that wound! It is much smaller and we are still policing the amount of time she sits. Working on ordering a new wheelchair. The area around the wound has a large red area and we can't clear it! I know its not a wound infection as its no worse and she looks fabulous! Actually the doctor came and did a house call on Thursday and said she looks the best she has seen her in a long time! My heart melted. She ordered a swab of the wound to see if the skin has any issues. I did reach out to the specialist in the city. Its about a 2 hours from me but I feel its going to give us more information. I know our local surgeon will not be happy but I feel this appointment is for our daughter's best interest! So I booked it .. praying Wed gives us more answers!

    On hold until then <3

    Still dreaming of Disney!
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Hello,

    We are still floating along <3 I hope all is well with everyone! My DD celebrated her 28th birthday last Tues and it was amazing! She had a FROZEN cake we had made for her. She loved all the attention and the presents .. lol ... We were over the moon to celebrate her special day <3

    Now to talk about that wound! It is much smaller and we are still policing the amount of time she sits. Working on ordering a new wheelchair. The area around the wound has a large red area and we can't clear it! I know its not a wound infection as its no worse and she looks fabulous! Actually the doctor came and did a house call on Thursday and said she looks the best she has seen her in a long time! My heart melted. She ordered a swab of the wound to see if the skin has any issues. I did reach out to the specialist in the city. Its about a 2 hours from me but I feel its going to give us more information. I know our local surgeon will not be happy but I feel this appointment is for our daughter's best interest! So I booked it .. praying Wed gives us more answers!

    On hold until then <3

    Still dreaming of Disney!
    Happy Belated Birthday to your wonderful daughter. ❤ It sounded wonderful.

    Prayers going out for Wednesday. 🙏
     

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