feeling defeated

Diana ZP

Earning My Ears
Joined
Jan 15, 2019
Just started reading your posts- you and your family are so strong!!! You remind me of the famous line from Galaxy Quest- "Never give up- never surrender!" All the wonderful positive vibes and thoughts and prayers from this group is so great- lots of good healing! So sad about Nova Scotia, so very wrong for that! Keep on staying strong, hugs and prayers to you all.
 

weswife

DIS Veteran
Joined
Feb 15, 2009
Just started reading your posts- you and your family are so strong!!! You remind me of the famous line from Galaxy Quest- "Never give up- never surrender!" All the wonderful positive vibes and thoughts and prayers from this group is so great- lots of good healing! So sad about Nova Scotia, so very wrong for that! Keep on staying strong, hugs and prayers to you all.
Thank you for replying .. I love that quote. I will have to get that made on to something, thank you for that. I am trying to be strong .. my family is also. Its interesting as when my DD first became so very ill the doctors tried to encourage us to let her go and I said very strongly ... " I will never give up " <3
 


weswife

DIS Veteran
Joined
Feb 15, 2009
Today is kind of a down day. The nurse just finished her home visit and feels the wound has taken a change. She has not been here for a visit for a couple of weeks so she sees a difference. She is concerned about a tunnel and a deeper area. I am feeling down .. just when I thought it was better. Unfortunately because of covid 19 the specialists are not able to see her unless its an emergency and we are not there .. thankfully . Trying to float along and hold on tight <3
 
  • mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I hope it turns around, I hate that a day or a wound can change so quickly, let’s all pray for good results here. 🙏🌈
    Will she come back sooner than a few weeks this time ?
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    I have every 2nd day nursing care but the problem is ... its home care and the nursing is not consistent. So we can have 7 visits in 2 weeks with 7 different nurses :( I put a call into the surgeon that follows her today. I found a tunnel today and I am extremely worried. The secretary told me if she docent call today to call back tomorrow.. its not looking good for today :( I will call again tomorrow. I feel good that the wound is clean but this new tunnel plus the other makes me worry what is going on under the skin or inside the body. I feel sick to my stomach. She looks so good on the outside but this ulcer is ugly.
     

    Haimia

    Mouseketeer
    Joined
    Jan 28, 2010
    Ugh, I hope this wound/tunneling is not getting worse for your daughter. Thoughts and prayers for your daughter.

    How scary that you were only 30 miles from the mess in Nova Scotia. Prayers for all those affected!
     
  • weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Yes we had a nursing visit on Fri and she suggested we try a new dressing in the tunnel. We have decided to have a specialized team for her care, a group of 3 nurses! I will find this better as that way more consistency on the wound care. I am calling my family doctor tomorrow and see if she will see her and check the wound, to ease my mind. Thanks for all the replies, I have been sick to my stomach since Wednesday ... we love her so much <3
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Ugh, I hope this wound/tunneling is not getting worse for your daughter. Thoughts and prayers for your daughter.

    How scary that you were only 30 miles from the mess in Nova Scotia. Prayers for all those affected!
    Thanks for the prayers. The tunnelling is so sneaky as its all under the skin so you can't see it.

    Yes 30 mins from the tragedy, it was so scary watching it unfold .... all the innocent lives lost
     
  • weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hi all, My DD had her nursing visit and no much news today. They assured me a small team would start seeing her and the names (3 of them) given to me , well nope another new nurse today. This makes it more difficult to see if the wound is changing, I need consistency. I will call and follow up with the nursing care coordinator. I will get the blood labs results tomorrow, I am hoping I can talk to the doctor then and see if we can set up a visit. The virus makes everything so difficult and I understand that. I am beyond scared this ulcer will get deep again and take her life. I am worried sick.
    Today is my birthday.. Yes I enter a new decade .. the big 50! My DH tried his best to do so many nice things. My kids got me presents.. I love my family <3
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    Happy Birthday to you!! ❤


    Darn that is so frustrating. You do need consistency, I hope they get that act together.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    Hello friends, Today I waited for the weekly bloodwork results. Most of them remained the same so that was good! The white could went up a bit so thats a concern :( waited to hear what the CRP weasand unfortunately the lab said it was not requested! The nurse was mad because we have been doing weekly CRP since Sept???When the white count went up they wanted to se if the CRP went up as this would indicate an infection brewing :( The doctor wants it drawn tomorrow, makes me sad as she will have to be poked again. Our family doctor did a house call today after she spoke with the office nurse as she had relaid all my concerns. The family doc didn't really have much to say as she wants to talk to the surgeon. At least this will get the ball rolling, as they can talk their medical talk and fill me in. So its a waiting game for now. The part I am happy about as she looks well and no fever! This is an emotional journey and I greatly appreciate being able to post. For me its a release and reading the replies helps. Thank you for cheering her/us on! Stay well my fiends
     

    mommasita

    DIS VETERAN
    Moderator
    Joined
    Aug 3, 2004
    I’m glad the Dr. Came by, and there is no fever, not so much on the rest 😕

    Sorry she had to have more blood drawn, hopefully it is not too bad, and things get into motion.

    Please post away, I’m glad it’s a release for you, we are here for you, 🌈

    Hugs and prayers or positivity to your family, and especially to your daughter.
     

    weswife

    DIS Veteran
    Joined
    Feb 15, 2009
    I fell like we are spinning our wheels. The doctor called, the CRP is almost the same as last week. We will take that, stable . Next the family doctor wants to come back and take a swab of the wound to make sure the wound is not brewing another infection! Oh my nerves ... she explained she is worried its back and that will not be good. So now the wait as it takes 48-72 hours to see if the swab grows anything. After she gets the swab they will decide next steps. The family doctor was surprised that plastics or the general surgeon has not seen the wound since early Mar! I am so glad I kept pushing but now on pins and needles until that swab comes back .... feeling sad and stressed <3
     

    Haimia

    Mouseketeer
    Joined
    Jan 28, 2010
    Deep breath and "try" (I know, it's hard!) to relax for a bit. All of our prayers and pixie dust to you!:tink:BTW, Tinkerbell has been told to be careful when sprinkling the pixie dust - must avoid getting it in the wrong spot!
     

    theluckyrabbit

    Moderator
    Moderator
    Joined
    Jul 23, 2012
    I fell like we are spinning our wheels. The doctor called, the CRP is almost the same as last week. We will take that, stable . Next the family doctor wants to come back and take a swab of the wound to make sure the wound is not brewing another infection! Oh my nerves ... she explained she is worried its back and that will not be good. So now the wait as it takes 48-72 hours to see if the swab grows anything. After she gets the swab they will decide next steps. The family doctor was surprised that plastics or the general surgeon has not seen the wound since early Mar! I am so glad I kept pushing but now on pins and needles until that swab comes back .... feeling sad and stressed <3
    I'm thankful that you have diligent medical care sticking with you through all this, even during these crazy times. Good for you for being a tough advocate for your DD! As hard as it seems (and we do understand that it is harder than it seems!), take this one day at a time. That's all we get anyway, and your DD needs you in this moment, today. We're with you here. Hang in there!
     





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