feeling defeated

[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

 

[mommasita]

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.

 

[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!

 

[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

 

[lisaviolet]

Thinking of you.

 

[butterscotchcollins]

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

 

[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

 

[Dan Murphy]

Bring on 2022 and let it be her year <3

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

 

[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.

 

[marcyleecorgan]

blessings for this new year!

 

[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.

 

[igrsod]

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

 

[LuvOrlando]

Wishing you and your family peace in the New Year.

 

[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!!!

 

[mommasita]

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

 

[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

 

[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

 

[lisaviolet]

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

 

[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

 

[RogueX]

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.