# feeling defeated



## weswife

Hi, I have never poured my heart out like this before. I need to let it all out. I will start with we are a family of 5 as you see in my pic.. The pic is about 10 years old... time to update! 
We went to Disney on Apr 26 and returned on May 10/19. My daughter is disable and had been battling a pressure sore on her leg for a few months at that point. We are great to do all her care and are not intimidated by any type of care she requires. What we did not know was the pressure sore was tunnelling to the hip/pelvic area and causing a major issue and infection. On May 13 we went to our local emergency. My daughter (26 yrs) was admitted to icu. She remained there for a week, she did stabilize . She was then transferred to the 4th floor where she remained until Sept 6. During this time she battled a deadly infection and her hip/pelvis deteriorated. Our family doctor actually met with us and encouraged us to stop treatment telling us she will never get well. Insisted the pressure sore was far too big and deep. The pelvis has become infected to beyond repair. My world turned upside down. I took a leave from my job, which I have worked at for almost 20 years. A big decision, a big shift in income. My daughter's will to live  is strong. Enjoys talking about Disney! I have met with an orthopaedic doc and a general surgeon and the general surgeon seems to be the only one in my court. She continues to push forward with us! So this is the background on my battle. I also have 2 kids age 31 and 20. My husband is my best friend and we work as a team, so very thankful for that <3 I have had 2 appointments with a plastic surgeon and he tells me we are processing but slow. She had been doing well since she came home. She finished iv antibiotics by the end of Sept. Everything was moving along good. Last week the wound became infected so she ended up back in icu and on iv antibiotics . She responded well and only stayed in icu for a week and is now home with nursing care plus myself. She is still on iv meds. 1 finishes Fri and the other will be for 4 more weeks. Luckily we have a portable iv med and she will be able to go to the FROZEN movie at the theatre on Fri! She is alert and happy <3 The family doctor wants to meet at my house today, so this leaves me with a dark cloud. My heart is broken and my mind is racing. I thought by pouring my heart out behind a computer screen would relieve some pain. I am feeling down today. I just want this to end and return to our normal lives. All she can talk about is returning to Disney in Dec 2020! Believe me she will be there if she is well! 
Please send a few prayers and pixie dust our way<3 She needs all that we can get. I will never give up hope. We return to plastics next week. This appointment is a 2 hour city trip away from us. My heart aches and my never are shot. Sorry for the long post <3


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## nickg420

First of all, prayers for you and your family. I can only imagine the emotions you all must be going through right now.

The company I work for specializes in wound care dressings specifically for your situation, you may already be using some of our products. I won't say the name in public forum for obvious reasons, but I will say it's a Swedish name and that may give it away for you. Anyhow, I just want to say that if you find yourself at home and running low on dressings and you are using our products I would be more than happy to send you more for absolutely no cost.

Just shoot me a PM and we can work out the details.


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## Welsh_Dragon

I am so sorry for everything that you and your family are going through.


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## Traveling on cc points

I wish I had some profound words of wisdom for you. I can’t even the stress your family must be going through. Prayers and pixie dust coming your way.


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## weswife

nickg420 said:


> First of all, prayers for you and your family. I can only imagine the emotions you all must be going through right now.
> 
> The company I work for specializes in wound care dressings specifically for your situation, you may already be using some of our products. I won't say the name in public forum for obvious reasons, but I will say it's a Swedish name and that may give it away for you. Anyhow, I just want to say that if you find yourself at home and running low on dressings and you are using our products I would be more than happy to send you more for absolutely no cost.
> 
> Just shoot me a PM and we can work out the details.


Thanks for the information. I live in Canada so I am not sure if we are using the dressings and supplies you are referring to. She was on a vac machine but with this infection the vac had to be removed and they are cleaning the wound with vinegar soaks 1 times a day. Thanks for offering .. so very kind of you!


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## weswife

Thanks for the replies. I am in definite need of a boost today. I go in her room and just melt. I need to be strong and not let her know how worried I am. This has been the most emotional journey I have ever been on. People keep asking when do I plan to return to work, I have no idea if I ever will. My goal is to care for my daughter... we plan to go to the ends of the earth to make her all again. We have been told the pelvis infection is not curable which causes the wound not to be curable. Broken hearted 
Today we had the nurse for 1st iv med it took 2 hours to run now she is back on the 1 iv med until 9 tonight it doses automatic. Still waiting for a house call from the family doc. My mind is racing .. wondering what she will say today


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## nickg420

weswife said:


> Thanks for the information. I live in Canada so I am not sure if we are using the dressings and supplies you are referring to. She was on a vac machine but with this infection the vac had to be removed and they are cleaning the wound with vinegar soaks 1 times a day.


 Negative Pressure Therapy is very painful but usually very effective. I hope the infection subsides and she can begin to heal again. 

Again, if you run into any issues where you feel you need something please let me know. While we may not have the exact dressing you may be currently using we can likely find something suitable to work for you.


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## weswife

Family doctor just made. house call. She said she is stable now so carry on as we are. I am so relieved she did not mention stopping treatment. Thanks for all the replies.. each one lifted me up! I will never give up on my little lady <3 even when all I have left is hope and prayer.


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## mommasita

I’m so sorry for everything you all are going through. Continue to pour your heart out here whenever you can, and whenever you need to.
I wish you nothing but healing for your daughter.
Gentle Baby steps, one at a time.

lots of love and hugs xo


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## weswife

Today she is having a better day! Last dose of iv med but will continue with iv med #2 for 4 more weeks. I pray she can maintain herself off the high dose of med #1. We are floating along until our city appointment with plastics. Today our plan is to "forget" all of her sickness and attend the new FROZEN movie!!!! I had nursing set up her portable iv pump so she can go to the movies. Of course the pump will be packed in a disney cruise line bag <3 Also stopping for pizza, she may not be able to eat but will enjoy the atmosphere! Trying to have a positive Friday <3


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## weswife




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## weswife

Today was another day of ups and downs. So fearful the ulcer seems to be getting worse. Luckily she still looks great! No fever and alert. I wish this ulcer would back off and heal again. I am fearful as to what the surgeon will say on tues at our weekly appointment. Wed is our plastics appointment in the city. I pray she will get some positive news .


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## luvmarypoppins

Healing prayers for your dd. Wishing her all the best.


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## weswife

Thanks for all the replies  

Today she is having a good day! Another plus .. her blood work is trending the right way! We need to take the positives as we get them <3 The doctor started the vac dressing machine again today, I pray her body cooperates with her! We also got a call to see an orthopaedic specialist on the 11 of Dec. He will give more information in regard to the hip and pelvis that are involved . So for now we float along the best we can <3


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## lisaviolet

I am so very sorry that you, your family and your daughter are going through so much weswife.

I know how difficult pressure sores are to deal with, how things can go from night to day and back around in what seems an instant. I am so very sorry. Please try to take care of yourself too, the best you can. 

But in other news ---

How cute is your daughter!!!!


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## weswife

lisaviolet said:


> I am so very sorry that you, your family and your daughter are going through so much weswife.
> 
> I know how difficult pressure sores are to deal with, how things can go from night to day and back around in what seems an instant. I am so very sorry. Please try to take care of yourself too, the best you can.
> 
> But in other news ---
> 
> How cute is your daughter!!!!


thank you so much! This pic was from fathers day with her dad <3 she thinks she is his favourite! Yes this wound is extremely difficult, the infection has destroyed her hip joint and has moved into an area of the pelvis. For now we float along... we keep pushing


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## dyna

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!


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## smiths02

Many prayers for your family!


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## I Love Pluto

Keep pushing!  I am deeply moved by the love you have for your daughter!
You are a one-in-a-million Mom!


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## weswife

Thanks for cheering me on! I need it sometimes <3 

I have not wrote for a bit, today is a day I need to.

We went to see a top orthopaedic specialist on Monday. This is in the city, about a 2 hour drive. He explained she has an infection deep within the bone, seems to be located in the pelvis and hip as noted. He said if/when the ulcer ( also referred to as a wound) closes he will do an advanced test to see exactly what we are dealing with in the bone. he will not rush in and do any surgery until basically we are pushed against the wall. Well ya got that right, as I know this surgery is life threatening and its a final straw. I did like the ortho doc as he spoke in terms we could understand and still provided us with hope! As parents you cling to every thread no matter how thin... We left that appointment feeling a little reassurance as he did not say we were at the end of the line. I think back to May when my own family doctor told us we were at the end and we should let her go. I can't even type that without tears.. sends shivers over me. Tues we went back to see the surgeon that follows her weekly at the local hospital. She felt the ulcer is a bit deeper but overall she looks good! The blood work tells a different story. Her CRP ( measures inflammation in the body) went from 77 to 179 in a week! WOW .. big jump.. NOT good  plus her hemoglobin dropped and her protein dropped.. add albumin levels dropped and we are trending the wrong way quickly! The surgeon decided to swab the wound and as of today Thurs we are still waiting for a response! Still on the outside she looks great! She is currently watching Disney+ .. one of her favourite pass times  and dreaming of a return trip to Disney! We do not know if that will ever happen but for now it provides comfort! 
The surgeon also told me we may have to consider admitting her back to hospital. She feels she will benefit from the use of another dressing, a veraflow vac dressing. Well now thats another can of worms. Not to be selfish but Christmas is coming and I would like her home for the holidays. The company has a policy not to allow veraflow to be used in the home, so that in turn means no VON nurses have been trained in the community to apply it. Well that got me on a quest! Yep ya guessed it.. I am on a mission to have that policy changed and the VON nurses trained! I am willing to be trained as well so I can aid in her care <3 I have been working at that since Mon and I think after many calls I am actually getting somewhere! Not to mention I feel this will open the door so others in the community can remain home and benefit from this machine! I might add.. I am used to getting what I want, I am an only child! LOL need to be light hearted sometimes... 
Today I continue my quest and dream of Disney! Yes Shavonne if you get well.... we will visit Disney in 2020!!!!
Have a great day friends  !


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## weswife

I Love Pluto said:


> 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!


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## weswife

dyna said:


> 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


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## Funfire240

I just read your posts and I'm sending prayers and good thoughts.  It sounds like she's a fighter and has strong will.


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## Jonfw2

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.


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## weswife

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!!!


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## weswife

Funfire240 said:


> 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 ..


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## weswife

Jonfw2 said:


> 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.


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## RogueX

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.


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## weswife

RogueX said:


> 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 ...


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## lisaviolet

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.


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## lisaviolet

weswife said:


> 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!


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## weswife

lisaviolet said:


> 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!


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## weswife

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


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## weswife

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


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## mommasita

Thinking of you both. Good thoughts all around


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## WeatherLights

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.


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## weswife

WeatherLights said:


> 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!


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## weswife

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


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## MommyinHonduras

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.


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## weswife

MommyinHonduras said:


> 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.


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## 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.


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## 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*.


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## 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.


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## J'aime Paris

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


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## 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!


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## marcyleecorgan

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


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## 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.


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## 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.


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## 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!


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## Haimia

the photo


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## 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


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## StitchesGr8Fan

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


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## PAsFab5

weswife said:


> 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.


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## 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


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## fairygagamother

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


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## weewuvvdisney

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


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## WeatherLights

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


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## lisaviolet

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


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## 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.


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## Grumpy's Gal




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## weswife

We are having a difficult week. Her wound/ulcer has become deeper and we seem to be losing ground.. My heart is breaking but I refuse to give up! As a mother you hang on to every thread and I am still hanging in. I did the wound care myself this morning so I could get a good look at it. We return to the specialist on Feb 12 .. praying for a turn around <3


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## Melissa Perez

Thinking of you and your family - from reading through there is not a doubt in my mind you are a group of fighters. But just like a boxing match there are many rounds, keep it up and hoping you knock it out soon


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## weswife

Today is a full round of blood work, wondering where the results will take us. She is in absolute great cheer and happy I am home <3 Counting down the days to return to the specialist in the city , the 12 th of feb to see what he has to say. She is happily talking about a Disney trip, it sure keeps her spirits up! I don't know if I mentioned I returned to work on Jan 13. Only to have my employer present a letter and an improvement plan for the store I manage on the 31. Well it ate it me so much that I quit the job I worked at for almost 20 years! I strongly feel my employer is using my leave against me and almost "punishing " me for it. While I was gone from the position the restaurant failed miserably and  I feel my employer is holding my leave as the reason so he is not happy with me. Just what I needed more stress on my plate. I had originally met with them on Jan 10 and nothing was mentioned returned the 13 and presented a letter on the 31 dated the 15. A major blow to the self esteem and gut. So yesterday I quit at the end of my shift. This was a major decision and now I need to see if I am eligible for EI so I will have to launch a case against the employer. My life feels as if its falling apart but my strongest feeling is ... I have my daughter <3 I knew when I applied for the leave my employer would not be happy as I have seen a lot in my 20 years but I have no regrets! Did it cost me my job... yes but I have my daughter <3 so as I spend the day crying, I walk into her room and see her beautiful smile and know .... we will be ok. Life goes on and we continue to push forward ... thanks for all the support as I am an emotional wreck ... hugs


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## mommasita

Ugh, sorry about the job, I hope you can get EI.  I just wanted to send you some support.


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## weswife

mommasita said:


> Ugh, sorry about the job, I hope you can get EI.  I just wanted to send you some support.


Thank you! It has been an emotional battle ever since Feb 2 @ 330 .... losing my financial security and its what I did for 20 years! My husband does the maintenance for the 10 restaurants plus my oldest DD works at another location and my DS works the summer and odd weekends while in university. So its difficult on all of us but like I stressed to my family continue with your employment as I know each of you are loyal to me and you don't have to quit b/c I did. They seem to be struggling with the idea of working there but I keep encouraging them. In the end I know I will get another job. Life continues and I see this as a new chapter .. forward I go! I LOVE my DD and I am not willing to negotiate her care for anyone or anything <3 At least today I have not cried about the job loss.. so I am getting there!


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## weswife

Today I am on a high! WOW.. her blood work is back and its looking the best I have seen! Her CRP which measures inflammation in the body is down to 33.7 .. this is the lowest its been in 2 years!!!!! I am beyond excited!!!! As a reference.. cop normal is 0-3 .. so yes its still increased but at one point during this illness her CRP was over 300!!!! So we have made great headway. Tomorrow we are off to see the specialist in the city, if the weather cooperates. Pending snowfall alert..... Now if we could get the wound to start closing but with all this amazing blood work her body will soon start to kick in. I still have no job which is frustrating but my EI is in the processing stage so it may all work out  I have a final interview at a store in the mall on Thurs so I may have a new job! I applied for a few other jobs .. I actually think she saved me as I have been wanting a change but never brave enough to do it ... she gave me the push I needed!


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## macraven

Good news and very happy about this update 

Pixie dust sent and hope you get that job


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## weswife

Hello,
We are trending along positively! WOW!!! I am so happy <3 tomorrow is her blood work day so fingers crossed! The ulcer/wound is starting to fill in, now if only that continues. This is something we were told may never happen so to hear a bit of positivity is exciting! We are on a real high. She is continually asking about Disney, so if all trends positive she will get to go! We keep encouraging her and Disney keeps her spirits up which I honestly believe helps her heal. This week I will hear of I got a new job, so thats good too! hopefully this will be a wonderful week!!!! 2019 was NOT our year so bring 2020!!!!!!


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## mommasita

I’m so glad to hear such positive news from you and your daughter!

sending along some extra strength ones for bloodwork tomorrow, and hopefully good news on the job front.


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## weswife

Waiting for the nurses to come and dress the wound. Also do her bloodworm. Today is a holiday so we will get the results tomorrow, fingers crossed! 8 months ago today we were planning her funeral.. typing that makes me shutter. Now here we are today reading along and talking about Disney! I don't know if it will happen but the thoughts keep her going <3


----------



## macraven

Happy thoughts keeps peeps going 
Wish the best for her on the lab results!


----------



## weswife

Unfortunately the blood labs are back and the CRP has doubled. The CRP indicates the inflammation in the body so its a concern. Her other labs were not too bad with the exception of her pre-albumin. However overall she looks well and I hang on to that <3 thanks for all the prayers. This illness is a journey and its very difficult. Thumbs down kind of day ...


----------



## mommasita

I’m sorry to read that. what is the treatment in the meantime? To help with the inflammation


----------



## weswife

She has a pressure sore which is often referred to as an ulcer. Basically we need to keep it from getting infected or bigger/deeper. It is bone deep now but the bone has a thin covering so we need to at least maintain. She is on a variety of meds to keep the inflammation down. Also change the dressing on the ulcer using products to keep it clean and aid it to fill in. Also she is limited as to how much time she can spend on it so lots of turning and minimize sitting. She is in bed a lot at a 30 degree angle.Its a difficult illness and requires a lot of care/thinking. We love her so much! <3


----------



## weswife

Hello, another new week for us! Her labs this week are a bit improved! Very nice to see the CRP has dropped a bit now if we can trend that way! We went for a follow up with the surgeon yesterday, she felt the ulcer has started to tunnel again and is very concerned! She debated on removing some skin which would expose more surface area on the ulcer. I don't want that to happen as it will make the ulcer much larger but the risk of the tunnels is another issue! I am having a super sad day today, tears as I type. I keep a strong face. The surgeon has changed the way we pack the ulcer in the tunnel, as I asked if the packing is causing pressure so its a consideration. The ulcer is deadly ... staying on the upside her bloodworm is stable and she herself looks good.. I continue to hang on to that thought! Of course my old job has got me down, I hear all the gossiping and I can't help but take it to heart. I worked there almost 20 years so it weighs heavily on me! Still waiting on a decision from EI, did not get the job I was considering. On the upside I have a 2nd interview at the bank for a p/t position on Fri! Plus the cafe project has asked me for references so the wait continues! I know we have new chapters...


----------



## mommasita

You have a lot to deal with. I will keep up with positive and happy thoughts and prayers.
people will talk, you can’t control that, try not to let that get to you. 
Strong Hugs MOM


----------



## weswife

I have been feeling down since last week after the surgeon visit. The ulcer is starting to tunnel which is extremely dangerous! I am almost out of my mind ... More bloodwork tomorrow... fingers crossed! We don't go to the surgeon this week we go for follow up next week. The original job I applied for and thought the interview went extremely well, called and wants to discuss tomorrow. I thought it would be a good fit for me but since I have interviewed for 2 more jobs. 1 job is a contract for a year but full time and same wage as my old job, job # 2 is a 15 hour week position that may lead to more hours and same wage as old job. At a crossroads with the path to take.. still waiting for ei to make a decision. Life is a struggle .. but I have no regrets for quitting my job to care for my little lady. Just typing that cleared my head ....


----------



## weswife

Goo morning! We got the blood work back yesterday and it is trending better. All areas have improved and that feels positive. Now the ulcer itself is another issue, it is still tracking toward the femur. It is getting bigger and deeper. Feeling overwhelmed and sad today.


----------



## Deb1993

Wishing the best to you and your family!  Prayers!


----------



## mommasita

Continued thoughts and prayers to you all.


----------



## smiths02

I have been reading along and am still praying for your family.


----------



## mommasita

I was thinking of you, your daughter, and entire family.


----------



## lovemygoofy

With all that is going on, I wanted you to know I am still holding you and your family up in my prayers. I admire your caring and tenacity and the mama bear attitude. Your family is incredibly lucky to have you.


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## weswife

Hello, We are floating along! So far so good. We are self isolated my daughter and I by choice! We are terrified and sooooo worried about her! Her bloodwork this week is stable and the wound is about the same. We continue to have daily nursing visits to keep us home <3 the surgeon is calling me Tues for a follow up. I hope each of you are doing well and staying safe!


----------



## RogueX

weswife said:


> Hello, We are floating along! So far so good. We are self isolated my daughter and I by choice! We are terrified and sooooo worried about her! Her bloodwork this week is stable and the wound is about the same. We continue to have daily nursing visits to keep us home <3 the surgeon is calling me Tues for a follow up. I hope each of you are doing well and staying safe!



I don't know how it is where you are, but the conditions in MA are starting to get to where people coming in from other states are to self quarantine. No school until early May, etc. 

Glad you are getting through this so far, so good.


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## mommasita

Glad to hear from you, isolating is the best choice.
lots and lots of love and prayers to you and your family going out. Be safe


----------



## Dan Murphy

I'm just seeing this for first time, weswife. s  Your daughter, you and family have been through so much.  She and all of you are in my prayers of healing.  My best for her. s


----------



## weswife

Thanks for all of the replies. I live on the very east coast of Canada. Yes all non essential places are closed. All boarders to our province are closed. To go grocery shopping only 1 family member is permitted to shop and the store only lets a few people in at a time. You must follow the directions on the floor and social distance 6 feet apart. Our nursing visits are daily and may have to be reduced and we need a plan in place. Thankfully I am able to provide a lot of her care and will learn to do a sterile dressing change. Its scary for sure! I wish all of you health and safety during this difficult time.. hugs to all


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## weswife

Today has been a difficult day. My DD labs are not the best and the worry comes back. The surgeon called me to talk and she asked a lot of questions. She said to reach out if we are concerned and she will make a plan to check her over. She said we need a plan in place if she becomes ill. She also reviewed the precautions we have in place and said they were great! She told me she is in a high risk category, which I knew. So, my mind took off and its been a sad day. We now only have nursing every 2nd day and I do her wound care the other day. I like to do it so I can get a good look at the ulcer/wound. We have nursing tomorrow. The other good part is it cuts down on the traffic in and out of my house, her exposure to people. Surgeon agreed to that. As of tonight my DD still looks well and has no fever! I am beyond thankful for this! I continue to pray and clean like a nut. ( Ah need a bit of humour) Her birthday is Mon so thats exciting!!!! Trying to put something special together might be difficult but in my heart I am so thankful she is here to celebrate <3 Thanks for letting me vent and not worry about judgement .. Stay well my friends <3


----------



## mommasita

It sounds like the medical team is very adept ! I’m glad to hear that, as well as less people coming and going   It is wise to have a plan in place. Praying it is just “in case”.
Wishing your daughter a very HAPPY BIRTHDAY! No matter how you celebrate, a May west with a candle, lol. It’s the Bday, and you are all together ❤
i wish for healing and peace, my fellow Canadian . 
Stay Safe


----------



## ZTator

I am following along with your story. God bless your precious family. What a wonderful loving parent you are, may God richly bless you and keep your precious daughter and family safe. Hang in there, life doesn't have to be perfect to be good. Blessings and much love sent your way!


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## marcoi

its ok to let it out . look forward to your trip it will help you through


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## weswife

Thanks for the replies! We had another week of blood labs and they have improved so we are happy!!! We are also so very thankful that she has avoided the virus. Its a very scary time for all and pray for a vaccine . She celebrated her 27th b-day yesterday with a vamparina cake! No party but our hearts filled with joy watching her smile. Thanks for all the prayers we greatly appreciate it and we pray she wins this battle <3


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## butterscotchcollins

I've been reading along and praying so hard for your daughter, you, and your family! You are one tough Mama and you are doing a great job taking care of her - hold on to that hope and know you have a lot of prayers and support from my little corner of the world.


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## mommasita

HAPPY Belated Birthday to your princess!!

I am glad to hear the Positive lab results.  Stay safe and stay well


----------



## weswife

Another Monday has come and gone. I am happy to report my DD's blood labs are stable! She is feeling good and dreaming of Disney! We continue to pray she will be well enough to travel in Dec! I have been doing her wound care every 2nd day now for a few weeks and I can actually se an improvement! So far the infection has calmed down, we know its always there and will never truly leave. The specialist tells us she has septic arthritis so I am trying to learn more about that. I guess for us if there is a positive side to this virus ( which there really is not) I am still home able to care for her <3 We had to take her to the hospital as the nurses were. not able to access her port to obtain the blood sample. I was terrified! I had to include a pic of our visit. She was so scared of the virus she looked petrified, she was so good! I was surprised she understood the level of covid-19. I guess she is listening/watching. My family all works for a franchised restaurant, my DS starts back tomorrow as his 2nd year university is complete! They are now all required to wear masks at work plus gloves. I worry about their safety everyday <3 

I am not sure if you folks are aware of the massive shooting that took place in my province over the weekend. It has left our province shaken and in mourning. The shooter took 20 lives so far. He burned multiple homes and the RCMP are still investigating to determine how many lives are lost. We live about 30 mins from where this all happened. This is said to be the worst mass murder in Canada. My heart goes out to all the innocent lives lost. As the stories start to emerge in some ways we are all connected. I am so very thankful we are all safe and I send my deepest condolences to all the loved ones left here to mourn. We put out white and blue christmas lights out last night to represent #novascotiastrong Here is my house with the white and blue to support Nova Scotia and honour the lives lost for a senseless reason. 

Thanks again for letting me vent. It so helps my soul .. have a good day and stay safe/healthy my friends!


----------



## butterscotchcollins

Love hearing positive news from your family but so sorry it's coming in tandem with a national tragedy. It was shocking to hear the news coming out of Canada - praying for those affected. It can feel hard and scary and overwhelming when there is so much going wrong in the world around you, it's OK to focus on your little bubble for a while and celebrate the wins - your daughter's stable blood labs, her optimism and her dreams of Disney, and the other little things that bring you joy whether it's a cup of tea or a blooming tulip. Stay strong! I'll keep praying for you


----------



## marcyleecorgan

Lots of positive energy coming your way from Alberta <3  Blessings and warmth for Nova Scotians!


----------



## Dan Murphy

Thanks for the update, weswife.   In spite of all, it sounds like your daughter is coming along.  And good she can be at home.  's

So sorry to hear about the NS shootings.   The lights on your home are great. Nova Scotia Strong.


----------



## mommasita

Hi there, hugs and blessings to your family and daughter.  Praying for your trip. 

Such a tragedy, all of Canada   Is flying the flag at half mast in honor of the lost lives in this senseless tragedy.  Nova Scotia, and the East coast is so special to me, and I pray so hard and have shed many tears for these families.


----------



## Diana ZP

Just started reading your posts- you and your family are so strong!!!  You remind me of the famous line from Galaxy Quest- "Never give up- never surrender!"  All the wonderful positive vibes and thoughts and prayers from this group is so great- lots of good healing!  So sad about Nova Scotia, so very wrong for that!  Keep on staying strong, hugs and prayers to you all.


----------



## weswife

Diana ZP said:


> Just started reading your posts- you and your family are so strong!!!  You remind me of the famous line from Galaxy Quest- "Never give up- never surrender!"  All the wonderful positive vibes and thoughts and prayers from this group is so great- lots of good healing!  So sad about Nova Scotia, so very wrong for that!  Keep on staying strong, hugs and prayers to you all.



Thank you for replying .. I love that quote. I will have to get that made on to something, thank you for that. I am trying to be strong .. my family is also. Its interesting as when my DD first became so very ill the doctors tried to encourage us to let her go and I said very strongly ... " I will never give up " <3


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## weswife

Today is kind of a down day. The nurse just finished her home visit and feels the wound has taken a change. She has not been here for a visit for a couple of weeks so she sees a difference. She is concerned about a tunnel and a deeper area. I am feeling down .. just when I thought it was better. Unfortunately because of covid 19 the specialists are not able to see her unless its an emergency and we are not there .. thankfully . Trying to float along and hold on tight <3


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## mommasita

I hope it turns around, I hate that a day or a wound can change so quickly, let’s all pray for good results here. 
Will she come back sooner than a few weeks this time ?


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## weswife

I have every 2nd day nursing care but the problem is ... its home care and the nursing is not consistent. So we can have 7 visits in 2 weeks with 7 different nurses  I put a call into the surgeon that follows her today. I found a tunnel today and I am extremely worried. The secretary told me if she docent call today to call back tomorrow.. its not looking good for today  I will call again tomorrow. I feel good that the wound is clean but this new tunnel plus the other makes me worry what is going on under the skin or inside the body. I feel sick to my stomach. She looks so good on the outside but this ulcer is ugly.


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## Haimia

*Ugh, I hope this wound/tunneling is not getting worse for your daughter.  Thoughts and prayers for your daughter.

How scary that you were only 30 miles from the mess in Nova Scotia.  Prayers for all those affected!*


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## mommasita

I hope you heard back, and possibly got a visit ? Always thinking of you guys very much


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## weswife

Yes we had a nursing visit on Fri and she suggested we try a new dressing in the tunnel. We have decided to have a specialized team for her care, a group of 3 nurses! I will find this better as that way more consistency on the wound care. I am calling my family doctor tomorrow and see if she will see her and check the wound, to ease my mind. Thanks for all the replies, I have been sick to my stomach since Wednesday ... we love her so much <3


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## weswife

Haimia said:


> *Ugh, I hope this wound/tunneling is not getting worse for your daughter.  Thoughts and prayers for your daughter.
> 
> How scary that you were only 30 miles from the mess in Nova Scotia.  Prayers for all those affected!*


Thanks for the prayers. The tunnelling is so sneaky as its all under the skin so you can't see it. 

Yes 30 mins from the tragedy, it was so scary watching it unfold .... all the innocent lives lost


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## weswife

mommasita said:


> I hope you heard back, and possibly got a visit ? Always thinking of you guys very much



thank you for supporting me/us <3 its been a tuff week!


----------



## mommasita

weswife said:


> thank you for supporting me/us <3 its been a tuff week!



Always supporting and praying, 
I hope you hear from your Dr.
Try to take care of yourself as well, I know it’s so easy to say, but your arms are so full,


----------



## weswife

Hi all, My DD had her nursing visit and no much news today. They assured me a small team would start seeing her and the names (3 of them) given to me , well nope another new nurse today. This makes it more difficult to see if the wound is changing, I need consistency. I will call and follow up with the nursing care coordinator. I will get the blood labs results tomorrow, I am hoping I can talk to the doctor then and see if we can set up a visit. The virus makes everything so difficult and I understand that. I am beyond scared this ulcer will get deep again and take her life. I am worried sick. 
Today is my birthday.. Yes I enter a new decade .. the big 50! My DH tried his best to do so many nice things. My kids got me presents.. I love my family <3


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## mommasita

Happy Birthday to you!! 


Darn that is so frustrating. You do need consistency, I hope they get that act together.


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## RogueX

Happy birthday! Hang in there and keep up the positive thoughts, as hard as it may be.


----------



## weswife

Hello friends, Today I waited for the weekly bloodwork results. Most of them remained the same so that was good! The white could went up a bit so thats a concern  waited to hear what the CRP weasand unfortunately the lab said it was not requested! The nurse was mad because we have been doing weekly CRP since Sept???When the white count went up they wanted to se if the CRP went up as this would indicate an infection brewing  The doctor wants it drawn tomorrow, makes me sad as she will have to be poked again. Our family doctor did a house call today after she spoke with the office nurse as she had relaid all my concerns. The family doc didn't really have much to say as she wants to talk to the surgeon. At least this will get the ball rolling, as they can talk their medical talk and fill me in. So its a waiting game for now. The part I am happy about as she looks well and no fever! This is an emotional journey and I greatly appreciate being able to post. For me its a release and reading the replies helps. Thank you for cheering her/us on! Stay well my fiends


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## mommasita

I’m glad the Dr. Came by, and there is no fever, not so much on the rest 

Sorry she had to have more blood drawn, hopefully it is not too bad, and things get into motion.

Please post away, I’m glad it’s a release for you, we are here for you, 

Hugs and prayers or positivity to your family, and especially to your daughter.


----------



## weswife

I fell like we are spinning our wheels. The doctor called, the CRP is almost the same as last week. We will take that, stable . Next the family doctor wants to come back and take a swab of the wound to make sure the wound is not brewing another infection! Oh my nerves ... she explained she is worried its back and that will not be good. So now the wait as it takes 48-72 hours to see if the swab grows anything. After she gets the swab they will decide next steps. The family doctor was surprised that plastics or the general surgeon has not seen the wound since early Mar! I am so glad I kept pushing but now on pins and needles until that swab comes back .... feeling sad and stressed <3


----------



## Haimia

*Deep breath and "try" (I know, it's hard!) to relax for a bit.  All of our prayers and pixie dust to you!BTW, Tinkerbell has been told to be careful when sprinkling the pixie dust - must avoid getting it in the wrong spot!*


----------



## theluckyrabbit

weswife said:


> I fell like we are spinning our wheels. The doctor called, the CRP is almost the same as last week. We will take that, stable . Next the family doctor wants to come back and take a swab of the wound to make sure the wound is not brewing another infection! Oh my nerves ... she explained she is worried its back and that will not be good. So now the wait as it takes 48-72 hours to see if the swab grows anything. After she gets the swab they will decide next steps. The family doctor was surprised that plastics or the general surgeon has not seen the wound since early Mar! I am so glad I kept pushing but now on pins and needles until that swab comes back .... feeling sad and stressed <3


I'm thankful that you have diligent medical care sticking with you through all this, even during these crazy times. Good for you for being a tough advocate for your DD! As hard as it seems (and we do understand that it _is_ harder than it seems!), take this one day at a time. That's all we get anyway, and your DD needs you in this moment, today. We're with you here. Hang in there!


----------



## mommasita

Hi Weswife, how are things ?  Any news on the swabs/results ?


----------



## weswife

Hello, We have been missing in action for a bit. My DD's weekly blood labs from Monday were not great. On Tues the swab showed an infection. On Tues our family doc called and reviewed all her levels with me and requested Shavonne be admitted. My heart was broken but the doctor was scared she was crashing. I was worried sick. My husband drove us to the hospital as the doctor wanted to send an ambulance but we didn't want the fuss. When we arrived to the hospital my husband was not permitted inside. I had a special authorization from our doctor to accompany her, which I was very thankful for. Family doc met us at Emerg and accessed her. She was relieved to see her looking well, he actual words... she looks damn good! I said yes she does lol... Anyway she admitted her upstairs to be monitored and start treatments. Her electrolytes , potassium, magnesium , albumin and pre albumin were all beyond low levels. She explained all of her concerns and I cried. I stayed with her until she was settled around 10:30 pm that night. I went home and she FaceTime us a few times, so happy she got that phone for her b-day! Around midnight she called and said she was homesick and wanted to go home. I calmed her down. I went back for 8 am and she was doing better! We final got home last night , they knew our goal was HOME! lol She is now on IV meds for 2 weeks and doing vinegar soaks 2 times a day in the wound/ulcer. The infection HATES vinegar! So I am praying the next 2 weeks it takes a hike and we try to get the wound moving again! Overall she is looking good and we are happy to be home <3


----------



## weswife

mommasita said:


> Hi Weswife, how are things ?  Any news on the swabs/results ?


I just posted. THANK you so much for reaching out to me. Its been a ruff week <3


----------



## marcyleecorgan

Healing thoughts continue your way!


----------



## mommasita

@weswife Oh what a rough week, poor you guys.  I’m glad safe was treated, and I hope this can make A big difference. What stressful times it must have been.

Happy Shavonnre is home (what a fantastic name btw), and she heals, and you both get the rest you need and deserve. 

 .


----------



## theluckyrabbit

Being back home is great news! And all that love is some of the best medicine in the world for your DD. So glad she was able to get the extra care and treatment she needed.


----------



## butterscotchcollins

Sending you love from my corner of the world - you’re a great mom and you’ve got this!


----------



## Haimia




----------



## weswife

Thank you for cheering us on! <3 I take great comfort and strength from this group <3 Yes its been a difficult week but we are making progress according  to this week's blood labs. The ulcer/wound it self looks clean so thats positive! The not positive is the ulcer is getting deeper in the centre which is dangerous  The tunnels are another concern, as they are hidden under the skin making trouble. Yesterday was a milestone day, it was 1 year ago since we flew home from Disney. We noticed that day she was starting to look sick but had no idea what a journey it would be. On may 13, 2019 she was admitted to ICU and her journey began. I am beyond thankful to have my beautiful daughter <3 . Thanks for the kind comment about her name! My husband loved the name and changed the spelling Siobohan to Shavonne! Trying to make it easy  Now the wait for this week's blood lab results!


----------



## mommasita

I’m sorry I’m so late, personal issues, now hopefully resolved 

I took an extra long browse through your thread at your Dds pictures. Such a beauty .  How are things ?


----------



## weswife

mommasita said:


> I’m sorry I’m so late, personal issues, now hopefully resolved
> 
> I took an extra long browse through your thread at your Dds pictures. Such a beauty .  How are things ?



Hi, I hope life has settled down for you <3 hugs

Today is another round of full bloodwork but no results until tomorrow. The IV meds will be completed tomorrow morning so the count down is on!!!! Fingers crossed <3 

Now to get this ulcer/wound to start moving again! I plan to touch base with the surgeon on Wednesday and see what the care plan will be. Hopefully the ulcer will start to clear. Shavonne is so focused on a Disney Christmas trip!!!! This was a promise made way back in May 2019! I did book our DVC, feeling so nervous! I actually believe it helps her heal. 

Wishing everyone a fabulous day! Thanks for the kind comments xo


----------



## butterscotchcollins

Fingers crossed for good news tomorrow!  What is Shavonne looking forward to most about returning to Disney?


----------



## mommasita

weswife said:


> Hi, I hope life has settled down for you <3 hugs
> 
> Today is another round of full bloodwork but no results until tomorrow. The IV meds will be completed tomorrow morning so the count down is on!!!! Fingers crossed <3
> 
> Now to get this ulcer/wound to start moving again! I plan to touch base with the surgeon on Wednesday and see what the care plan will be. Hopefully the ulcer will start to clear. Shavonne is so focused on a Disney Christmas trip!!!! This was a promise made way back in May 2019! I did book our DVC, feeling so nervous! I actually believe it helps her heal.
> 
> Wishing everyone a fabulous day! Thanks for the kind comments xo



thank you 

Hoping all goes well, and it starts to clear.

i hope beyond hope the trip will happen, it’s sooo good to have this dream and goal to get us through, especially children when they aren’t well.  Baby steps to get there, one day at a time.


----------



## weswife

butterscotchcollins said:


> Fingers crossed for good news tomorrow!  What is Shavonne looking forward to most about returning to Disney?




Shavonne LOVES all of Disney but Magic Kingdom is her favourite! She LOVES characters! She talks non stop about all the plans she has and I pray it will happen! Being told this time last year she would never travel again and more then likely lose her life... makes me shutter. I want her to be able to enjoy a trip and its kept her spirit so high! <3


----------



## weswife

Hello Friends,

We are on a life high today! Shavonne just finished her final does of IV meds for this round. Her blood labs are looking better! Now to get a wound/ulcer care plan in place. I have reached out to the doctor and the surgeon trying to get a new plan. Tonight we can return to our normal as we will not need a night visit from the nurse as I can do the wound care myself! Ahhh it feels good  I just want a magic wand to wave and get this ulcer moving forward again! It consumes our life .. decides what we will do. I am feeling a little bit of positivity even though the nurses are cautioning me ... I need that hopeful feeling. <3 we love her so much! We want that healing sooo bad ... 

I also got an email update ... I had applied for a new position and got hired but when covid19 happened everything got put on hold. Well today I got invited to a meeting that looks promising. This makes me feel even better! Although I have greatly enjoyed being home to care for my little lady <3 

What a great day! I hope each of YOU are having a fabulous day as well <3


----------



## weswife




----------



## weswife

Here are 2 pics of my sweet girl. She is wearing a special mask my cousin made for her, it has a disney look of course! Next pic is the day we were leaving the hospital <3


----------



## butterscotchcollins

weswife said:


> Here are 2 pics of my sweet girl. She is wearing a special mask my cousin made for her, it has a disney look of course! Next pic is the day we were leaving the hospital <3



She has a beautiful smile, you can see it through the mask! So happy to hear good news all around   Keep going! You've got this!!!


----------



## weswife

butterscotchcollins said:


> She has a beautiful smile, you can see it through the mask! So happy to hear good news all around   Keep going! You've got this!!!



Thank you


----------



## mommasita

butterscotchcollins said:


> She has a beautiful smile, you can see it through the mask! So happy to hear good news all around   Keep going! You've got this!!!



This exactly !!

I am over the moon excited for you all.


----------



## Haimia




----------



## weswife

Hello Friends, its a beautiful sunny warm day here today! My DD is feeling good, which makes me feel wonderful. Today is a bloodwork day but her regular nurse is off today so we moved the bloodwork until tomorrow.. They draw the blood from a port in her chest and only a few nurses are trained or feel comfortable. So an extra day to wait for results but I am ok with it because she looks great! The wound/ulcer is about the same so I will take that as a positive as its not worse. It seems to be at a stand still.... I will be glad when we can return to appointments with specialists to gain some insight. We have 1 more week of vinegar soaks and then we need a new care plan. This floating along gets tuff .... but the risk of the virus makes it understandable. Most importantly she is happy and able to enjoy her computer or cell phone


----------



## weswife

Hello friends  

I hope my post finds you doing well. My DD had another weekly blood labs, she is holding her own! The only worry is that darn CRP, it shows inflammation in the body. It should be 0 but today its showing 63 which is 8 points up from last week and 16 points in 2 weeks. I am not letting it get to me as I remember the plastic specialist telling me she can't be 0 with that big wound! So that makes sense but the specialists her relate an elevated CRP to be an indicator that the osteomyelitis is back. This can make my head spin and most of all my heart sink. The family doctor did a home visit today and will follow up with the surgeon as to what the next step should be. The wait is a killer as the mind never stops! Overall my DD looks well and no fever so I try to focus on that <3 We love her so much and wish this was over 
We bought a 4 foot deep above ground pool in hopes of her being able to enjoy! She can't be submerged in water but if we wrap the wound hopefully she can be put in a dingy boat to float! She spent the entire summer in the hospital last year so I want her to enjoy the beautiful days this year! 
I can't help feeling a bit down today. Hearing what the family doctor said as the wound has good points and bad. In closing remarks she did say the would has not gotten worse so I have to replay that in my head!


----------



## butterscotchcollins

Focus on the positive! I also wish this was over for you guys, like, tomorrow, but know that every day is a step towards progress and healing  Sounds like she is going to be quite the sunning beauty this summer on her float - don't forget the sunscreen!


----------



## mommasita

I agree, try and focus on the positive. 
The pool sounds wonderful, she can always get a nice hat and be the captain of her ship .  Hoping for sunny days and good news. Love and light my friend


----------



## weswife

butterscotchcollins said:


> Focus on the positive! I also wish this was over for you guys, like, tomorrow, but know that every day is a step towards progress and healing  Sounds like she is going to be quite the sunning beauty this summer on her float - don't forget the sunscreen!


 Thanks for the reply. Yes its been a long journey that we want an end. I am beside my self working another area is opening and possibly another ulcer. I am almost out of my mind. Still waiting on a reply from the doctor as to what the next steps will be. Haha she is so excited about the pool!


----------



## weswife

mommasita said:


> I agree, try and focus on the positive.
> The pool sounds wonderful, she can always get a nice hat and be the captain of her ship .  Hoping for sunny days and good news. Love and light my friend ❤


Yes trying to stay positive <3 wish I could turn the mind off. Today was nice, my son is home on a day off. He went out early and got breakfast for all of us, it was a great treat! We hung out together at home <3 I canceled DD nursing visit and done her wound care with the help of my son <3 It was a great day just the 3 of us! 
Oh how she would love to be the captain of her own ship!


----------



## lovemygoofy

I'm always in awe of a mother and her determination and love. This thread is inspiring. I still continue to keep you all in my thoughts and prayers. There is super cute floaties that are shaped like unicorns or other fun shapes that is big and she might enjoy that as way to be out on the water without getting water in any area she shouldn't.


----------



## mommasita

Hi, I’ve been thinking of you @weswife , and your family, especially your daughter

Hope you are just too busy, and all is well. ❤
it’s been like 40 with the humidex this week, so I’m doing my housework and I’m in my pool by 11. Lol.  Such a heatwave, but I love it.


----------



## lisaviolet

Thinking of you all weswife. 

Hope you've had some positive days.


----------



## weswife

Hello,

We have been having a heat wave as well. Thanks for reaching out and continuing to cheer us on <3

My DD took a few steps backwards, which has been a worry. The wound has stoped healing. So the doctor is trying to decide how to get it moving again. They have switched up the dressing care. Last week the surgeon cut a few sections away to give it a boost! She figures the tissue is dead in areas so maybe by removing it, the wound will reboot so to speak. We have not been to the plastic surgeon since early march because of covid. The ulcer has a few tunnels and thats a mystery as to why its tunnelling, she feels its a possible infection. We will never be truly clear of the infection as it got into the pelvis, they would have to remove 1/2 of the pelvis to clear it but thats entirely too RISKY! I never knew this ulcer/wound would rule our lives! It calls the shots on EVERYTHING we do! 

On a happier note... We got an above ground pool installed! We are still working on redoing our backyard, thats another story .. lol

We have had our DD in a small boat in the pool and she loves it! She loves spraying her family with the garden hose too!!!! I love seeing her smile and laugh, it makes me forget. On Monday we are going to the city! We can finally get her new insert for her wheelchair! We have been waiting for a year! Its custom made so it will help her when sitting and hopefully relieve some pressure allowing her to sit longer! We are also testing a new tilt chair! We plan to buy that next if it helps her! 

Wow.. I had a long post


----------



## mommasita

Sorry to hear about the steps backwards. HOPE with all power that the infection can be stopped and rebooted. 

I am smiling thinking of your daughter hosing the family .  Good times for sure. It seems like you will all have a lovely summer.

As always, I pray so so strongly for healing.


----------



## weswife

Hello,
A little update on my DD. She went to see the surgeon today for a follow up from last week. The surgeon removed another small section from the wound but was pleased with the top area! Finally some positivity! Worried about the section she removed but there seems to be a lot of blood, so this means healthy tissue! Hopefully it will get the reboot it needs to move forward..... again.

Yesterday we went to the city to see about her wheelchair . The new insert was finally ready! After a long wait of 15 months ... She is sitting so much better! This new insert will relieve the pressure on her pelvis allowing it to heal. We also ordered a new wheelchair!!!! This is super exciting!!!!! The new chair has a tilt feature, this will allow her to reposition but stay in the chair. Plus relieve the pressure on the pelvis! What a win!!!!! Of course it comes with a price tag ... just under $9000 when all competed! Yup got all the bells and whistles  

Feeling positive today! I THANK each of you that took time to reply and knowing we had people cheering us on <3


----------



## RogueX

Great news!


----------



## mommasita

Such wonderful news all around.  I love hearing it .  Sorry about the cost, but yeah on everything else.
Wishing you all a Happy  Canada Day !


----------



## lisaviolet

weswife said:


> We have had our DD in a small boat in the pool and she loves it!



Boy we've been having wonderful weather for spraying one's family.


----------



## mommasita

lisaviolet said:


> Boy we've been having wonderful weather for spraying one's family.



This is so true. I don’t think we have ever used our pool so much. I love summer


----------



## lanejudy

@weswife   I'm a little delayed checking in, but so glad to hear your good news!  I hope the new insert as well as the new wheelchair will provide her a more comfortable position as well as help with the healing.  So happy to hear she's having fun with the hose and the pool!  Your post was just the kind of good news I needed to read today.  Thank you for sharing.


----------



## weswife

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


----------



## mommasita

Oh @weswife of course I will keep you all in my daily thoughts and prayers. I’m so glad she is home and negative for Covid. . What a scary time for you all.  I am glad it is improving. One day at a time. 

April is a lovely time for Disney, and hopefully by then the world will be different. Love and light


----------



## theluckyrabbit

Hooray for being well enough to return home! She's a fighter, that's for sure. So glad for good medical care, a negative COVID test (whew!), and a new job, too. And through all that, the wound is no worse, but actually improving? That really is good news. Delaying your Disney trip may not be a bad thing in the long run -- things may be safer for everyone by then, which would mean less worry for you. Hang in there and know that you have many DISers supporting you!


----------



## lovemygoofy

weswife said:


> 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

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

Sorry to hear of her hospitalization, but glad that she's recovering at home. Stay strong and positive.


----------



## weswife

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

weswife said:


> 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


----------



## mommasita

@weswife . This is so wonderful to read!  I love this update. Blessings all around. Continued good thoughts to your daughter, yourself, and your entire family.


----------



## theluckyrabbit

weswife said:


> 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

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

weswife said:


> 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

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

mommasita said:


> 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

weswife said:


> 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

lisaviolet said:


> 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

weswife said:


> 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

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

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

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

weswife said:


> 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

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

weswife said:


> 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


----------



## alohamom

weswife said:


> 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

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

weswife said:


> 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

weswife said:


> 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

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

weswife said:


> 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.


----------



## Snowysmom

Sending prayers for your dear daughter and family.


----------



## BaymaxForever

Prayers for strength, comfort and healing and sending love to your daughter, you and your family.


----------



## macraven

On my nightly prayer list


----------



## Haimia

*So sorry to hear this.  Keeping your DD and family in my thoughts and prayers.  Please update when you can!*


----------



## weswife

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


----------



## macraven

Shocking and upsetting news 

my condolences to you and your family
Holding you in prayer


----------



## mommasita

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

*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

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

weswife said:


> 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.


----------



## weswife

lisaviolet said:


> 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!


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## weswife

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!


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## mommasita

weswife said:


> 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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## lisaviolet

mommasita said:


> Prayers going out for Wednesday.



From me as well. Hope the appointment gives you  both clarity, knowledge and peace.


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## weswife

Hello Friends,

We went Wednesday and saw the specialist in the city. He gave us more hope that we are on the right road to healing, we return in 2 months for follow up. 

On Friday the infectious disease doctor saw us. She said she wants to go back to aggressive treatment. She thinks the infection in the bone is still causing issues and perhaps its best to do another round of IV meds for 6-12 weeks. UUUUrrgggg ... but having said that its an antibiotic that penetrates the bone. So, I think maybe this is something to try! If we can get get that bone infection settled it will help her wound close and hopefully prevent her from becoming so ill. I guess we give it a try. Starting Monday we will return to the hospital for the day to start the meds. At least she can remain home with VON care. 

We all know the goal is to remain well and home!of course slide a trip to Disney in <3


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## mommasita

weswife said:


> Hello Friends,
> 
> We went Wednesday and saw the specialist in the city. He gave us more hope that we are on the right road to healing, we return in 2 months for follow up.
> 
> On Friday the infectious disease doctor saw us. She said she wants to go back to aggressive treatment. She thinks the infection in the bone is still causing issues and perhaps its best to do another round of IV meds for 6-12 weeks. UUUUrrgggg ... but having said that its an antibiotic that penetrates the bone. So, I think maybe this is something to try! If we can get get that bone infection settled it will help her wound close and hopefully prevent her from becoming so ill. I guess we give it a try. Starting Monday we will return to the hospital for the day to start the meds. At least she can remain home with VON care.
> 
> We all know the goal is to remain well and home!of course slide a trip to Disney in <3



Here is to hope. Let’s pray the aggressive treatment does what it should, and closes that darn would.  
stay safe. Love and prayers.


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## Grand Koalafornian

Oh man, I’m sorry your daughter and your family is going through all this! I hope the aggressive treatment kicks the infection’s butt and the wound can heal fast after that.

Praying for you and your family!


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## weswife

Hello,

Thanks for the encouragement! I appreciate it so much <3

We got 2 weeks in, hooray! She looks great and continues to be home. That darn wound is still there, gggeezzz it rules our lives! Sitting is still limited so that gets annoying. She still enjoys all of her Disney you tubers, that is a great passtime for her! She wants to go so bad and I want to take her just as much <3

My province went into a 2 week lock down again yesterday! Our cases are very high! My husband got the vaccine last Monday and my age group opens up hopefully Fri! 

We continue to press on! Have a great week


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## lisaviolet

Thinking of you.


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## butterscotchcollins

Praying for you guys! What a roller coaster but you are one fierce mama - praying to hear a good news update from you!


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## weswife

Happy New Year! 

A little update :

My DD is home <3 She is battling another infection. Its actually the same bug .... osteomyelitis ! Its raised its ugly head and is on the move from the pelvis to the femur. She started IV antibiotics for 8 weeks, scheduled to be done Jan 14, 2022! Back to the city specialist on Jan 18, hopefully he has better news. The wound is smaller but still present. Its smaller in size but still deep. It has come a long way but still rules her life! We ordered a new wheelchair. She still spends most days in bed on her air mattress. The new chair has a 180 degree of tilt. She still dreams of Disney! Its a big pass time for her, watching and talking about Disney! Currently the wound treatment is iodine and dressings. We canceled our Christmas 2021 Disney trip because of COVID but it worked out because of this darn infection being on the move! 

We love her so much! She has the sweetest smile and can light up a room <3 Hopefully she makes a turn around. If someone told me this wound/infection would be still ruling our lives in 2021 from 2019 .. I would never have believed it!!!!! 

Bring on 2022 and let it be her year <3


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## Dan Murphy

weswife said:


> Bring on 2022 and let it be her year <3


So well said, weswife.  Wishing your daughter a much better 2022.  God bless.


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## Snowysmom

Your love for your daughter comes through so much in all your posts.  I hope that 2022 brings healing to her and you can think about the Disney trip she is dreaming of.


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## marcyleecorgan

blessings for this new year!


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## mommasita

I’m sorry yo read thus weswife. Wishing your daughter the best, as well as you and your family. May that infection go away, and yoir lives get better.


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## igrsod

I know 2022 is your year.  I hope you and your daughter get to Disney soon.


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## LuvOrlando

Wishing you and your family peace in the New Year.


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## weswife

Hello,

Thanks for all the replies! The support means a lot <3 DD finished her 8 weeks of IV  antibiotics ! Now to see if she can maintain herself and keep that infection at bae. We are scheduled to see a specialist in the city on Tuesday , fingers crossed for a good report. The wound is still present but smaller , I world have never believed she would still be battling it! We ordered a new wheelchair the end of Nov it will help her sit. She is still spending most of the day in her bed. When she looks at me and flashes that BIG smile, it melts my heart!!!!! We are planning a trip to Disney in May... if possible! We have not told her but hopefully!!!!! For now we continue to push forward!!!


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## mommasita

Here is hoping and praying the infection stays away, and you can complete that trip !


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## weswife

Well its going into week 2 with no IV antibiotics! Tomorrow will be a full round of blood work to check her levels. She has developed a bladder infection but is on 10 days antibiotics by mouth and is tolerating it well. The ortho specialist called today to book an appointment to see her on Feb 1. Hopefully he will be able to answer a few questions for us. He will also tell us what the plan looks like to move forward. My emotions are all over the place! Her sweet smile keeps me together <3


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## weswife

Hi everyone! 

We are going into week 5 with no antibiotics which is exciting but comes with a but ......

We went to see the plastic surgery team, he suggested we be seen by the orthodox team. Plastics seem to feel the wound has stalled out from healing and the osteomyelitis is on the move  My heart is broken. We had the appointment with the orthodontist team last week and he has suggested surgery. My heart is saying NO but my mind is YES, so by the time we left the appointment the papers were signed. The orthodontist team will remove sections of the bone that are infected within a reason of safety!!! The plastics team will repair and close the wound using muscles and tendons. The actual surgery will be 5-7 hours.. go my nerves. I hope this surgery brings a new beginning to her journey to wellness. The timeline ... in about 4 weeks he thinks it will happen. Due to covid. She will need blood transfusions and be admitted to ICU. as its a very intense surgery. It will take place in a city hospital about 2.5 hours from my home. I plan to stay with her as I am her advocate <3 I have gave my job the heads up as I will request a leave. I know the system is strained .. but I need to be with my daughter. So, we are in limbo waiting ...

Thanks again for all of the support .. its been a long journey! 

She's got this! xo


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## lisaviolet

Have been thinking about you both - love and good wishes sent. Hope it all goes well.


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## weswife

Thank you <3 

Next time I will proof read my reply .. lol

She is being operated on by the orthopaedic team and the plastics team. The orthopaedic team will remove a section of bone from her pelvis and femur bone. At least I can talk about it without crying ... such a worry


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## RogueX

weswife said:


> Thank you <3
> 
> Next time I will proof read my reply .. lol
> 
> She is being operated on by the orthopaedic team and the plastics team. The orthopaedic team will remove a section of bone from her pelvis and femur bone. At least I can talk about it without crying ... such a worry



Good luck, I hope it all goes smoothly.


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## mommasita

Oh my, I’m sorry I missed this.  I hope the operation is a success for your daughter. To you and your family.
Did you get a date


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## Dan Murphy

Thanks for the updates, weswife.  It sure sounds like your daughter has a good team working to make her well again.  And I am sure you all will be on that well-earned May WDW trip.  Blessings for your daughter, all of you.


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## Silver saucer

My thoughts and prayers are with your daughter, you and your family. What a long road you have been down. Your daughter sounds like an amazing person!


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## modavi

Just wanted to add my voice to the chorus of well wishers in this thread. I can't begin to imagine how difficult this would be to watch your little girl go through something like this. Life can be so cruel sometimes. I have faith though that this surgery will help and you will all be laughing and smiling at Disney again very soon.

Good luck to you all


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## lisaviolet

weswife said:


> Thank you <3
> 
> Next time I will proof read my reply .. lol
> 
> She is being operated on by the orthopaedic team and the plastics team. The orthopaedic team will remove a section of bone from her pelvis and femur bone. At least I can talk about it without crying ... such a worry



I somehow missed your reply weswife. How is everything? Hope it was all a success. 

Sighing for her and for you. Hoping for better days .


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## weswife

Hello Everyone,

We have been offline for a bit. Yes, she had her surgery early June. She went through it like a champ!!!! We have had many ups and downs. We canceled our Disney trip for Christmas as she is not stable. The wound is not healing.She had been on a vac dressing machine but in early Oct they removed it as it was really bothering her skin. They did another debridement and she is now on strict bed rest with repositioning every few hours, very minimal sitting. We go back to the city on Wednesday with a nervous feeling. Our last visit was not good, the plastic surgeon told us he is very concerned about the wound and it is threatening her life. I cried the entire drive home for 2.5 hours. Since that day, I have dried my eyes and picked up the pieces! WE will keep pushing... WE LOVE her so much. I am looking forward to the Wednesday visit but scared out of my mind... but I need to know. I need follow up! All she talks about is DISNEY I pray we can take her again. THANKS for all the support and prayers .... I appreciate it so much <3


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## CinderEmma94

weswife said:


> Hello Everyone,
> 
> We have been offline for a bit. Yes, she had her surgery early June. She went through it like a champ!!!! We have had many ups and downs. We canceled our Disney trip for Christmas as she is not stable. The wound is not healing.She had been on a vac dressing machine but in early Oct they removed it as it was really bothering her skin. They did another debridement and she is now on strict bed rest with repositioning every few hours, very minimal sitting. We go back to the city on Wednesday with a nervous feeling. Our last visit was not good, the plastic surgeon told us he is very concerned about the wound and it is threatening her life. I cried the entire drive home for 2.5 hours. Since that day, I have dried my eyes and picked up the pieces! WE will keep pushing... WE LOVE her so much. I am looking forward to the Wednesday visit but scared out of my mind... but I need to know. I need follow up! All she talks about is DISNEY I pray we can take her again. THANKS for all the support and prayers .... I appreciate it so much <3


Sending positive thoughts, prayers and well wishes to you, your daughter and family.


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## LuvOrlando

So sorry you and your family are struggling with this, sending wishes for an ok trip in on Wednesday.


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## Dan Murphy

Wishing your daughter and you well, @weswife .  She, you and your husband all are in prayers and good wishes.  She will get to Disney, just watch. 's


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## weswife

Thank you for the replies. I feel a bit sad tonight .. well maybe more overwhelmed. Wishing for Wednesday .. I think


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## macraven

sending you hugs


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## weswife

An update :

We went for her follow up appointment last Wednesday. Overall it went fair. Not a lot of improvement but its only been 3 weeks. At least she is not going backwards! Back on strict bedrest and offloading the pressure on the wound. We go back on Dec 7! She is a trooper and we will continue o push forward <3


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## Dan Murphy

weswife said:


> An update :
> 
> We went for her follow up appointment last Wednesday. Overall it went fair. Not a lot of improvement but its only been 3 weeks. At least she is not going backwards! Back on strict bedrest and offloading the pressure on the wound. We go back on Dec 7! She is a trooper and we will continue o push forward <3


Thanks for the update, weswife.  She certainly does sound like a trooper, as do you and your husband.  Continue to push forward, YES!!


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## Snowysmom

I just saw the updates.  She is definitely a trooper and she has such a great family to help her and be there for her.  You are all amazing.  Such dedication and so much love.  Keeping you all in my prayers.


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