feeling defeated

[butterscotchcollins]

Beautiful family!! Look at your DD’s smile!!

 

[weswife]

Update .. spoke with infectious disease doctor this morning and she feels my DD is stable! We reviewed meds, all 42 pills! As of right now her blood work numbers are her normal, so I feel happy! No med changes as of today. I asked for blood work to be moved to monthly ID doctor has no issues and agreed but did suggest to run it by her family doc. We did a blood draw today and that might help him agree as well. Now to get this wound to close .. home stretch!!!! We see the plastics team in Feb!!! Prayers for Disney in April to celebrate her big 30!

 

[butterscotchcollins]

Update .. spoke with infectious disease doctor this morning and she feels my DD is stable! We reviewed meds, all 42 pills! As of right now her blood work numbers are her normal, so I feel happy! No med changes as of today. I asked for blood work to be moved to monthly ID doctor has no issues and agreed but did suggest to run it by her family doc. We did a blood draw today and that might help him agree as well. Now to get this wound to close .. home stretch!!!! We see the plastics team in Feb!!! Prayers for Disney in April to celebrate her big 30!

Wonderful news!! Prayers up!!

 

[Dan Murphy]

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!

What great pictures!!! She looks so very happy!!!

Update .. spoke with infectious disease doctor this morning and she feels my DD is stable! We reviewed meds, all 42 pills! As of right now her blood work numbers are her normal, so I feel happy! No med changes as of today. I asked for blood work to be moved to monthly ID doctor has no issues and agreed but did suggest to run it by her family doc. We did a blood draw today and that might help him agree as well. Now to get this wound to close .. home stretch!!!! We see the plastics team in Feb!!! Prayers for Disney in April to celebrate her big 30!

Wonderful news and update. Disney, here you all come!!!!

 

[weswife]

Thank you she is an amazing lady for sure!!! We love her so much … it’s been a journey. Hopefully she will be Disney bound in April

 

[lisaviolet]

So happy to see your updates weswife. Wishing you all a wonderful new year & a great trip.

 

[weswife]

So happy to see your updates weswife. Wishing you all a wonderful new year & a great trip.

Thank you! It’s been one HECK of a journey! Hopefully we get to take her on this magical birthday trip

 

[weswife]

Hello,

I decided to jump on with another little update! My DD is home and happy <3 Her wound is still fairly large and deep but looks clean. No signs of infection and its pink in appearance. We have taken over wound care on the weekends, in her words we have weekends off! lol .. She has not been on IV meds since Sept 6, 5 months IV free in Feb and 6 months since a hospital admission. My DH tells me not to jinx it by counting the days but it gives me peace. I wish the wound would close faster but I guess it takes time... feels like forever! As noted we are planning a DISNEY surprise birthday trip for her in April .. BiG 30! I would not be intimidated to take her with an open wound, us doing wound care. I am very efficient completing wound care. I am now doing it on the weekends and snow storms. Fevers and infections scare me and just how sick she can become. I wish for the day .. life was back to normal. Today is a bit of emotional day .... I was at the grocery store and a lady struck up a conversation with me. She knew me from my old job but doesn't really know me. Anyway, she straight out asked if my DD was still alive! WOW .. went on to ask about where she lives and my future plans. I was so rattled. I know people mean well but it was a lot! Lots of thoughts flooding my brain today, when this happens I recognize that I need a brain shift so I came here <3

 

[butterscotchcollins]

It’s a happy update! We love to hear it. Keep focusing on the positive and how DD is healing - you’ve got this! Sending a prayer for continued progress and for your sweet mama heart to feel good today.

 

[Dan Murphy]

Great update @weswife. That Disney cruise trip is right around the corner now.

Some people just don't know how to be gentle with their words. Good place to come here for your brain shift.

 

[weswife]

HI ... back again with an update. Tomorrow is a big day! We are back to the city to see the plastic surgeon and his team. He has not saw the wound since Dec 18. I am praying for good news...I feel like sooooo much is riding on this appointment tomorrow! We booked a disney trip for her b-day in April, also a 3 night cruise. She has NO IDEA!!!!! I am hoping for a thumbs up for travel. Again, we would NEVER risk her health. The wound does look like its making progress. I know the wound will not be closed by early April which I can deal with. I am very efficient in wound care, I just worry about infection. Anyway ...... all is riding on tomorrow!

 

[RogueX]

Good luck, hope for the best!

 

[Dan Murphy]

Good luck, hope for the best!

Wishing for a great update tomorrow, @weswife.im betting it will be a good one, great progress. 's

 

[mommasita]

HI ... back again with an update. Tomorrow is a big day! We are back to the city to see the plastic surgeon and his team. He has not saw the wound since Dec 18. I am praying for good news...I feel like sooooo much is riding on this appointment tomorrow! We booked a disney trip for her b-day in April, also a 3 night cruise. She has NO IDEA!!!!! I am hoping for a thumbs up for travel. Again, we would NEVER risk her health. The wound does look like its making progress. I know the wound will not be closed by early April which I can deal with. I am very efficient in wound care, I just worry about infection. Anyway ...... all is riding on tomorrow!

I am praying for a great update !

OH MY goodness, that is so wonderful. Let’s wish for everything to be ok for travel.

Like Dan says about people, they just don’t think Or know how to talk to people. God Bless then, and wish them well, as they need the help. My Mother used to tell me to send people roses (in my heart and mind) when they annoyed me or got me angry when I was young, as it Serves you no purpose to let it hurt you.

 

[Dan Murphy]

OH MY goodness, that is so wonderful.

And wonderful to see you, mommasita.

 

[weswife]

Well .. not the best update to share.

The plastic surgeon and his team were hoping for more healing. They didn't seem to think the wound made much progress. I said, it is getting smaller but its slow. He did admit in fairness, he didn't really remember it. I should have shared my pics from last appointment but of course my defence mode clicked in! He did say.. at least its not worse.. so take that as a win! These appointments can make me feel down as I want so much for her! <3 I am trying not to let my mind take me there....

I did mention travel in private in the hallway. He agreed now is the time to go and he is happy for her! He said .. she needs to live as you all do. The key will be repositioning her to try and keep the pressure off it. Plus a section of it is around her sitting bone. So, it will take dedication on our part. Currently she is being covered by 3 heavy duty oral antibiotics. We have decided to continue our plans! The plastics team said he will see us when we return for follow up unless we have concerns sooner.

EEEkkk .. its getting closer! All she talks about is going bowling and having pizza!!! SHOCKER coming her way! Today as we passed the airport .. she said .. oouu the airport! Her dad jokingly said .. thats where we are going today .. fooled you! She was laughing .. silly dad!

 

[mommasita]

@weswife I am overjoyed that you Can take your daughter on vacation as who hoped. . Wonderful
As for the rest, one day at a time, as you said it’s a win.

 

[butterscotchcollins]

@weswife That’s a win!!! Prayers for her continued healing and you have SO MUCH to look forward to! It’s going to be a wonderful vacation

 

[Dan Murphy]

A great, so well deserved vacation just ahead. Your daughter is making progress, slow but sure. Celebrate,

 

[weswife]

THANK YOU for all the love and support! I greatly appreciate it <3 Today I am more upbeat. We had her nursing home visit and the nurse was eager to hear about the visit! The home nurse was like.. well we see improvement .. again I think the team is looking for MAJOR changes ...

We are looking forward to taking her to Disney! The key will be repositioning her to prevent the wound from getting worse putting her at risk. I am so excited for her!!!! Its been a long haul