Hope For Desiree

Desiree had surgery on Monday June 15th. Six weeks have passed with her weekly tissue expander fillings and it was time to remove it. They were able to stretch her skin out enough to remove almost all of the skin grafts she had on her face. She had a small piece of her nose left, they decided to remove it during surgery to make a larger airway opening for her, hoping to remove her tracheal tube, and also unblocking her left nostril. The trach is still in, they have to wait fo...r swelling to go down and the specialist to approve the new area before they can remove it. They also did a small insertion in the face flap to create a larger mouth opening for her. Her jaw is still very tight and she can't open her mouth very wide (maybe 1/4 inch) with a larger opening now and with stretching exercises, we hope this will progress over time. While in the OR, they also operated on her arm and leg. Due to the amount lost on Desiree's left arm, her motor functions are restricted, and she has had zero feeling in her ring and pinky finger, and much loss and constant tingling in her index and middle finger. They did a nerve transfer on her left arm to help gain some feeling and strength back in her hand. In regards to Desiree's leg, due to the amount of lose she indured, she has foot drop syndrome on her right leg. They did a tendon transfer to correct this. They estimate a three month recovery from this procedure. She was in the hospital for the night and was brought home yesterday (Tuesday) she has zero mobility. The surgery on her leg is currently too painful to put pressure to walk on, and using crutches is very difficult from her arm surgery. She managed to make it home and is couch bound to heal. She's in a lot of pain, but pain meds are helping and so are the cold smoothies and Netflix. Ashley See more

It's been a while since the last update. Things have been progressing slowly, and because of Covid19 all surgeries and appointments have been on hold. Desiree had her last surgery on March 4th where they inserted another tissue expander in her face to stretch her skin out even more then what the last expander had done. After she had it inserted, she was scheduled to go back in weekly to get the expander filled, but all appointments were cancelled until Covid was handled first.... Des has finally been able to go back into the hospital to start getting it filled as of May 7th. The filling appointments will be weekly and last about 5 weeks before having it surgically removed, where they also hope to create a larger mouth opening for her while in surgery. Desiree was having some issues with her stomach feeding tube on April 11th, she went into the hospital to get a replacement. There were a few issues while there but she was sent home the same day with some pain medication. That night she woke up early in the morning with agonizing pain in her stomach and the ambulance came to bring her to the hospital. The new tube wasn't inserted correctly so the liquid was being inserted into her body, rather then directly in her stomach. They ended up removing the feeding tube as she currently only uses it after any surgeries. They will discuss before her next surgery weather they need to re-insert one or can work around not having one. She was kept overnight to monitor, and able to go home the following day. During Covid, Des has had some Zoom appointments with a few doctors and specialists who have been working and monitoring her movements and progress, and phone appointments with her psycologist and at home exercises to do from her physiotherapist. Desiree also finally has a family doctor as of mid April. It was a bit difficult to find a doctor to take her on, given her extensive medical needs, but they are close to home and from the phone appointment seems to be a great fit for her. Overall, Desiree has been doing remarkably well and her spirits are still soaring. A lot of people have been asking how she is doing during our world wide pandemic, she has essentially been in isolation since October, so she's handling it very well. The only difficult time was when some close friends moved back home and she couldn't give a proper good bye. She's been trying to enjoy the beautiful weather we have been getting and keeping busy with some painting and lots of reading. Thank you all for following along her journey

A message from Desiree; Yesterday marked an important date in my life for anyone following my story. Exactly 4 months and 14 surgeries later I got go home. Not to visit Mr.man, grab an item or sit around with friends laughing but to resume living a regular life. I was nervous leading up to this day knowing all the new difficulties I would face in every day activities I use to deem easy. Now that I’m here I’m nothing but excited to deal with these struggles and continue to get stronger. I’d like to share how thankful I am for the friends and family I have. They have all helped me so much throughout this difficult time and I appreciate it all. To the next chapter! We love you des!

Thank you everyone ! Thankful to have such a support system behind Desiree every step of the way.

Don’t forget!! Saturday, January 18th from 7-11pm!