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» LymeNet Flash » Questions and Discussion » General Support » Prayer request

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Author Topic: Prayer request
char
Frequent Contributor (1K+ posts)
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Hi,

My daughter,14, had a new piccline inserted 8 days ago.

She has developed itchy rash with a bit of drainage.

Darn line has slipped out a few cm.

This morning our homehealth nurse removed statlock where the worst irritation was...secured with steristrips. I suspected stat was contributing to problem...

My girl is trying a mefix occlusive dressing today also.
All other occlusives have caused problems, but nurse said she was of opinion that this was only way to keep line in, basically. She wks with many piccline patients and is sweet, but brutally honest.

If she can't tolerat the Mefix,I can remove it and replace with pad and gauze wrap if need to tonight.

Going to LLMD with infusion clinic on Friday, so we are trying to get thru 2 days.

She had a picc pulled in Feb after 8wks of similar complications. This is getting too long!

Please pray that we can be wise and that we can hold on to this line.

She can't stomach orals.

Char

Posts: 1230 | From US | Registered: Nov 2005  |  IP: Logged | Report this post to a Moderator
MizMo
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That poor sweetheart. How awful that she's having such a problem with the line [Frown]

Praying for you all!

--------------------
http://scottsbt.com/maureen/mo2.htm

Posts: 145 | From Mystic Island, NJ 08087 | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
cbb
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Can't believe the problems you're having.
Will be praying that she will be able to continue her IV.

When you have time, please give us an update.
We'll be wondering how she's doing.

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char
Frequent Contributor (1K+ posts)
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Thanks for the encouragement, Mo and C. It means a lot.

The line slipped out tonight. I'm not even sure how it happened.

Her arm is so raw that I am relieved that we are done with this...nurse will come tomorrow to pull it. I was tempted to do it myself as the nurse had told me that the line was all the way out of her heart. I resisted and tried to fix her arm up as best as I could.

I'm sort of numb and going to try to rest a little tomorrow before we try to figure out what to do next.

See ya,

Char

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bettyg
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my prayers headed to your daughter/you....
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hopeful123
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prayers your way for you and your little girl. too much pain for a child and as a mom, it kills you to see your child sick. i know it was for me back when.

my very best

--------------------
some days you're the bug, some days you're the windshield  -

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chroniccosmic
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I'm sorry your baby is having such a hard time. We are in the same place only my baby is 18. Take very good care of yourself now and remember how lucky she is to have a mom like you.

Sending lots of hugs and prayers your way.

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lymeout
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Char,
Your and your dear daughter are in my prayers.

We have been through so much with picc lines. I hate them. Do you think she would do better with the mediport? My daughter has one now, and it has been much easier to care for; and if you infuse only 5 days a week, you get to have two days without covering to give the skin a rest.

Posts: 422 | From Herndon, Virginia | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
lymeout
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Hi Char!

This is Lymeout's daughter. I experienced the same thing when I first got a PICC. The tagaderm and statlocks gave me a rash and tore layers of skin off. I experimented with all kinds of different dressings and the best bandage BY FAR is the Smith&Nephew IV3000. I've never had a problem with it. It's very easy on my skin and stays on the whole week. I've got plenty if you would like to try it and can't get one from homehealth or your nurse! I hope that your daughter is doing better and I hope this problem clears quickly! God Bless!

Posts: 422 | From Herndon, Virginia | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
char
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You all have been such a comfort!

I have great friends, but when you tell them we are losing this line it is not the same as communicating with someone that has struggled with these and therefore has a lot of compassion.
Hearing,"Mommy it's out!" is one of the moments that stay with you.

Lymeout's daughter,
I will keep that adhesive thingy you mentioned in my bag of tricks.

Today, I don't want to have anything to do with any piccline for the rest of our lives! But that is just how I am feeling today.

Do you like your medport better?

Are you and mom going to Hope to Heal conference in Reston?

Char

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lymemomtooo
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Good luck..My daughter was able to have a picc line for a few weeks and then it just fell out like spaghetti..The nurse had used a chevron instead of a stat lock..

Things happen..We were able to have a second one put in and it was constant trouble..Air embolisms and later a blood clot and swelling...

Will keep you in my prayers..This is Hell...lymemomtooo

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DJP
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Char,
Sorry to hear of your daughters problems. My little ones take orals so I can't completely understand, but I think all of us Lyme mom's understand the pain of seeing your child ill.
I'll keep her in my prayers.

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blackbirdsings
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I am slow to respond, but I saw this a few days ago and have kept you all in my prayers.

I am dissapointed to hear the line slipped out. I so wanted it to work for your daughter. I am sure you all feel overwhelmed and dissapointed.

I hope something can be worked out so she can get the treatment she needs and not have to deal with stuff like this.

What causes PICC lines to slip out? I am new to learning about them, but will be getting one in a month or so.

Good luck and I hope something helps her very soon!

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Biting Back
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Gotcha covered with thoughts, prayers and hope.

You're really having a rough go of it and I'm sorry it has to be this way. Anyway, hoping to send some sunshine your way! [Smile]

--------------------
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Posts: 703 | From Almost Heaven | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
AZURE WISH
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Sorry she lost her line.

Mine had fallen out pretty far but I taped it good .... kept it wrapped up.... and could still infuse with it....

eventually it fell out all the way I got a new one and that one stayed in much better.

I hope she can still get the treatment she needs.

Best Wishes [Smile]

--------------------
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Lymetoo
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Prayers going UP! Keep us posted, OK?

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lyme Gypsy
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Sending lots of love, prayers, & good energy your way. Give her kisses from me. [kiss]

Love & Light

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Linda LD
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Oh Char!

I am so sorry! Lots of prayers going your way for you and your daughter.

God please bless both of you and send sweet, kind angels to watch over your whole family and help you, and may God give you the strength to get through this difficult time and feel His strenght and love for you.

Linda

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char
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Wow.
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char
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Oops.

Thank you so much for your kind replies.

My girl was infusing levaquin for bart. I was concerned to say the least about possible side effects. Our LLMD assured us that they had treated hundreds of folks with it and only one person had bad side effect which was caught right
away. So we decided to try it.

The 3 doses that we got into her before the line slipped out helped her remarkably. She is clearer mentally and has miraculously gone to sleep without medication 4 nights in a row. Down at 12pm and up at 9! Not so agitated.

Even though the infusions helped, I feel like the line came out for a reason; that we weren't supposed to do more.

So we're grateful for the improvement. Working on a new plan.

I am particularly touched that replies have continued to come in...very nice to "be around" folks get what is going on around here and are so supportive.

Char

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bettyg
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Char, you stated it right; nice to talking with supportive folks walking/were/will be in your shoes! I just love this board with their unconditional love when you need it most; right!
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hopeful123
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char,

glad to hear things are turning around for your daughter!!

[woohoo]

--------------------
some days you're the bug, some days you're the windshield  -

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SAK
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I hope things just continue to get better for your daughter. You are both in my thoughts and prayers. [group hug]

--------------------
Be well,
SAK
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Posts: 371 | From Up North | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
   

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