My daughter is having a central line placed on August 15th.
We fly to WA DC where our LLMD is. She has the surgey in the morning and then her first infusion in the clinic that afternoon,,
Then we pack up all of her meds and IV supplies and head back home, across the country. Then it's up to me to follow the protocol and administer the meds.
I know that anxiety about all of this is normal. I am sure after a week or two, that we will both feel much more confident.
But how in the heck do we get through the next two weeks waiting? How do I get through the first few days of infusion? What if I screw something up?
Sure could use some support about now. Would love to hear how others have managed and managed well.
Thank you in advance!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If you can afford it, you might want to hire a nurse from an infusion co for the first few days after you get home to get you started. I am sure others will come along with suggestions.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Watch the nurses. Ask them to show you and tell you how to do everything. Before you leave, make sure you feel comfortable performing the necessary infusion and maintenance skills.
Do you have any family members or friends that are RN's? If so, talk with them, they might be willing to help you at home. Most are happy to use their skills to help.
Be sure to set up a home health visit with an infusion RN for when you get home too. They will change her dressings and endcaps weekly. If she has a port they will reaccess the port. They will be available for you to call (or come visit) if you have questions or problems during the week.
My best advice, keep it clean. Make sure that everyone washes their hands before touching her line. Make sure that everyone SCRUBS her endcaps well not just swipes them with alcohol to kill the germs and clean them right before accessing them to flush or infuse. This is an IV line directly to her heart. Don't let anyone be lax with cleanliness. This is your daughter's life. You want her to get well.
It is scary now but you will learn. The nurses will teach you. We'll all be here to help you too.
Take care
Posts: 5237 | From here | Registered: Nov 2007
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posted
its not as scary as you think. I freaked out too and was really nervous and its really easy to figure out.
Just write down what the nurses are doing for the infusions so you'll have directions for when you get home. The first time doing it is kinda scary but after that its a sinch.
I agree with keeping it clean. Have the dressings changed, wash your hands, and keep an eye on it.
Just keep calm and be smart, and it will be ok.
Posts: 844 | From CA | Registered: Apr 2010
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