feeling defeated

[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

 

[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.

 

[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!

 

[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

 

[lisaviolet]

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 .

 

[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

 

[CinderEmma94]

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.

 

[LuvOrlando]

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

 

[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

 

[weswife]

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

 

[macraven]

sending you hugs

 

[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

 

[Dan Murphy]

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!!

 

[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.

 

[weswife]

Hello friends ,

Its been a while since I posted! My DD is stable right now, which is feeling positive! She has not been on IV antibiotics in the last 4 months.. so yup .. IV free 4 months! She has not had a hospital admission since early Aug, which I feel was more COVID related as she did have covid. She is getting bloodworm twice a month now, which hopefully we can convince the team to move to monthly. YES, I am always pushing the boundaries .. lol .. She still has a fairly large wound from the pressure sore and surgery. We are dressing it daily and eyeing it like a hawk. The wound looks clean and no infection. Its a very slow process trying to close it but we are waiting. The surgeons did mention we could look at amputating the leg to push her along. That decision for us is more of a last choice. She has not had a fever which is positive.. I will be honest I still check a few times a day and do her vitals.

Now skip to the good part....

We want to do something VERY special for her BIG 30 th birthday in April. We decided to book a cruise for her on the WISH! A 3 nighter Apr 7-10! Her birthday is Apr 6 and its also Easter! It scares me to death but again she has been stable since Aug! I am very efficient in wound care and I do it daily. I do have nursing daily, more so for daily follow up and yes we have been known to cancel. We have not told her, we plan to surprise her on flight day! We may end up flying out on the 6th and returning the 10 or 1. Which some may laugh stating what a quick trip! It will be the trip of a lifetime for us!!!!! my older DD is also going with her BF. My younger son wants to go but he is attending university studying his Masters in Political Science. He has reached out to his professors as it will be close to exams, I had to remove him from our reservation today as its final payment. I am hoping we can add him when he gets the OK!
I am so emotional over this trip, I go from excitement to fear!

I have an appoint with Infectious Disease on Monday. I will run it by her and hear her thoughts. We also can't have med changes as I did purchase medical insurance for her and she must be stable and no med changes 3 months prior to travel. I can't find insurance to cover a current pre-exsisting condition, that is active ( ex her wound) but I will keep looking.

Thanks again for all the replies and the cheers! I have greatly appreciated it, especially on some of our darkest days. This has been a long haul since 2019 but I see a dim light at the end of the tunnel <3

 

[Dan Murphy]

I think that dim light at the tunnel end is getting brighter every day, @weswife! What a wonderful update. Good to hear the progress your daughter is making. Wonderful news! Best wishes for a great, fun cruise for 30th! She'll love it.

Thanks for sharing this good new, @weswife .

 

[PAsFab5]

@weswife this is a great update!!! Prayers for health and a magical trip for you and your family!!!!

 

[butterscotchcollins]

This is fabulous news! Prayers for continued good health and a wonderful trip - she is going to freak with joy!!

 

[weswife]

Thank you .. Thank you!

She will be OVER the moon!!! She watches youtube daily .. all the bloggers! Talks disney and it keeps her spirits up! Between the 2 rooms.. hopefully we can add my DS.. we can go without him but it would not feel right. He is 23 and studying to be a lawyer, currently 5th year obtaining his masters in political science! He is an AMAZING brother <3

We are having a hard time keeping this secret! Her birthday plans are bowling and pizza at the restaurant across from the alley! Currently she is still on bedrest, only allowed to sit 1 hour five times a day. Very strict! So as you can imagine.. her thoughts about going out bowling and pizza are a big event!!!!

 

[weswife]

I wanted to share a few pics! A pic of my kids .. they love their sister so much <3

The other pic is DD sooooo excited Christmas morning!