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

 

[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.

 

[Welsh_Dragon]

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

 

[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.

 

[weswife]

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!

 

[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

 

[nickg420]

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.

 

[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.

 

[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

 

[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

 

[weswife]

 

[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 .

 

[luvmarypoppins]

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

 

[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

 

[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!!!!

 

[weswife]

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

 

[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!

 

[smiths02]

Many prayers for your family!

 

[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!

 

[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 !