feeling defeated

weswife

DIS Veteran
Joined
Feb 15, 2009
Keep pushing! I am deeply moved by the love you have for your daughter!
You are a one-in-a-million Mom!

Thank you! yes I will definetly NEVER give up and will continue to push <3 You are indeed correct I love my daughter .. she is my world <3 thanks for cheering me on!
 

weswife

DIS Veteran
Joined
Feb 15, 2009
So sorry you an yours has to go thru this. I like others wish I had strong words of wisdom but I don't. Don't know why we have to have so many bumps in the road of life but we do an sometimes hit a huge pot hole that goes clear to China that really knocks our bearings loose. Keep on pushing and find other who are willing to help you push .....and as my mother used to say when ya get tired of pushing PULL!
Yes I am at a complete hole in the road but I am trying to build a ladder to climb out! I will continue to push and maybe you are right.. time to pull! We love her so much <3 I will walk to the ends of the earth to help her <3
 

Funfire240

DIS Veteran
Joined
Feb 8, 2012
I just read your posts and I'm sending prayers and good thoughts. It sounds like she's a fighter and has strong will.
 

Jonfw2

Registered
Joined
Jul 23, 2019
For some reason, I KNOW that you will be updating us soon with very good news. Your daughter and you and your family WILL pull through this.

In the meantime, I believe you have found the perfect place for support and encouragement.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
This is a picture of her at the movies. We went to FROZEN 2 ... all medical equipment hidden in a backpack! She has an iv pump running and a vac dressing on her hip.. She looks just like any other sweet lady! Hard to believe she is living in a body trying to destroy her. She was so happy, her older sister let her pick a souvenir from the movie!!!
 

Attachments

  • 72325882_10156306859902101_2388916550120767488_n.jpg
    72325882_10156306859902101_2388916550120767488_n.jpg
    47 KB · Views: 113

weswife

DIS Veteran
Joined
Feb 15, 2009
I just read your posts and I'm sending prayers and good thoughts. It sounds like she's a fighter and has strong will.
She is a fighter! Her favourite song is the fight song!!!! we play it often.. sometimes tears sneak down my cheeks ..
 

weswife

DIS Veteran
Joined
Feb 15, 2009
For some reason, I KNOW that you will be updating us soon with very good news. Your daughter and you and your family WILL pull through this.

In the meantime, I believe you have found the perfect place for support and encouragement.
Its a battle and we are willing to fight! Its been a journey full of emotions and learning. You are right this is a place I can pour my heart out without judgement. Also I can hide behind a computer screen. I worked as a restaurant manager for 20 years in my town. I went on leave in May and I am actually shocked how much the communication has fallen off. At first lots of folks checking in .... now barely a soul. We spend our days home together. I have no regrets that way! Believe me... I am home with her and beyond thankful ... Its been life changing to go from 2 paychecks to 1 but we have our little lady and thats worth more then any pay check.
 

RogueX

DIS Veteran
Joined
Aug 21, 2019
As parents we never want to see our kids in pain, let alone endure something like this. Keep positive, which I know is usually easier said than done and take care of yourself as much as your daughter. Stay strong and hang in there.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
As parents we never want to see our kids in pain, let alone endure something like this. Keep positive, which I know is usually easier said than done and take care of yourself as much as your daughter. Stay strong and hang in there.
Thank you so much :) You are very correct! We are hanging on even by a thread ...
 

lisaviolet

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

I noticed that you wrote that her hemoglobin had been dropping. Please make sure that they are watching out for any signs of sepsis (cognitive changes/low blood pressure/hot and cold - chills/high or low temperature/nausea). I am sure they are, given her pressure sore/ulcer. Just want to make sure. I had sepsis and it took them a bit to realize. Don't want to add to your plate. Just sharing awareness.

Love sent weswife. Hoping for some good news for you all.
 

lisaviolet

DIS Veteran
Joined
Jul 9, 2002
This is a picture of her at the movies. We went to FROZEN 2 ... all medical equipment hidden in a backpack! She has an iv pump running and a vac dressing on her hip.. She looks just like any other sweet lady! Hard to believe she is living in a body trying to destroy her. She was so happy, her older sister let her pick a souvenir from the movie!!!
So cute. You can tell she was very happy, jumps off the page. Lovely to have a day out and about.

Tell her I don't even know a Samantha! :laughing:
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Thinking of you all.

I noticed that you wrote that her hemoglobin had been dropping. Please make sure that they are watching out for any signs of sepsis (cognitive changes/low blood pressure/hot and cold - chills/high or low temperature/nausea). I am sure they are, given her pressure sore/ulcer. Just want to make sure. I had sepsis and it took them a bit to realize. Don't want to add to your plate. Just sharing awareness.

Love sent weswife. Hoping for some good news for you all.
Yes sepis is a major concern. You are bang on, she has been septic in the past. So scary as it almost claimed her life. Loved your Frozen reference <3 she really enjoyed the movie!
 

weswife

DIS Veteran
Joined
Feb 15, 2009
We had nursing care today. Her ulcer looked clean so I will take that as a positive! Still waiting on the results of the swab from last Tuesday .. seems like forever! She goes to the surgeon tomorrow for follow up, hopefully it goes well! She had a full round blood work today, we will get the results tomorrow. Another long night of wondering/worrying. Please pray with me that the ulcer will show improvement tomorrow. I am worried as when I turned her on Friday I did hear a grinding noise so now I am worried ... thanks for reading along and sending all the well wishes
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Hello,

A little update. Her swab came back with no infection so that’s a plus. Unfortunately the vac had to be removed as bone chips or fragments are falling out the ulcer. We are now waiting for guidance from the specialists in the city. For now we are changing the dressing daily. IV meds continue until the 27 . I am so worried about her . My heart aches .. I have been trying to not think of the what if’s but today i can’t. Seeing the bone break away leaves me feeling she will never get better. I am petrified when the iv meds end that she will relapse and the infection will run rampant. All she talks about is returning to Disney and I agree but my heart breaks. I wish things were different. She is so happy .. if only this ulcer would settle down. Having a sad day today 💕😢
 

WeatherLights

Mouseketeer
Joined
Feb 4, 2018
My thoughts are with you and your family. Your daughter looks so genuinely happy in those pictures--it's beautiful to see her experiencing moments of joy during such incredibly difficult circumstances.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
My thoughts are with you and your family. Your daughter looks so genuinely happy in those pictures--it's beautiful to see her experiencing moments of joy during such incredibly difficult circumstances.
Thank you so much! Yes we try so very hard to give her a normal life .. filled with love and joy! She has an amazing sparkling spirit .. we continue to push forward!
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Today is a small victory! We finally got the go ahead to reapply the vac dressing which will add in closing the ulcer! On the plus side it seals so decreases the risk of infection. Today we fell happy! This illness is an emotional journey .... as a family we want her to be well and hang on to every last thread <3
 

MommyinHonduras

DIS Veteran
Joined
Dec 4, 2015
Glad to hear of that small victory! As a fellow mom of a special needs son, we need them. Sending thoughts of strength and peace your way. Also encouragement to find small moments to care for yourself. As you pour all into your daughters care, it's hard but necessary too.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Glad to hear of that small victory! As a fellow mom of a special needs son, we need them. Sending thoughts of strength and peace your way. Also encouragement to find small moments to care for yourself. As you pour all into your daughters care, it's hard but necessary too.
Yes you are so right! Last night my DH and myself went out to eat and actually went inside and sat down!!! We could not remember the last time we sat inside a restaurant ..lol.. So yes the little things <3 Thank you for reminding me! We put our heart and soul into her and don't regret a minute. Last night our older DD stayed with her . Still no vac yet as they have to order the machine, I assume the holidays will hold it up from arriving quickly.
 










Top