My daughter had her central line placed in her chest on the 15th. She has had a cough for 3 weeks now. The area on the collar bone where they made the insertion to thread the line is swollen. It seems more swollen than when she had the surgery. I can feel the line, I think.
She is taking cough syrup and has an inhaler. Is on her IV abx as well as zith for the bronchitis. Every time she coughs it puts pressure in the incisions. I am wondering if the swelling is from the constant cough or if this is normal or if it is an emergency.
I can call the clinic and the on-call nurse will call me back. I've already had to call twice since she's had the line placed and don't want to bother them if this is just 'normal'.
She has a slight fever but this is typical for her, especially with a herx.
Having a line to care for is stressful and scary! I've got the abx administration down, but the first dressing change was a disaster!
Anyway, I've emailed the IV nurse and will hear back from them first thing Monday. I would like to hear if anyone else has experienced something like this and what you all think about the swelling.
Thanks a bunch!
Posted by Haley (Member # 22008) on :
I was probably sore for about 4 weeks. I don't remember if there was swelling at the incision, but I had a lot of pain in my neck and trouble breathing. The fact that you can feel the line is normal.
Hopefully you will hear back soon.
The care for the line gets much less stressful and less scary.
I hope she will be okay. Sorry, no great words of comfort here. I can only tell you what I experienced.
Keep in mind that there is a foreign object in her body and in a sense is blocking one of the veins to some extent. It does take time for the body to adjust.
Posted by sammy (Member # 13952) on :
I would think that any post surgery swelling would be gone by now. It's been awhile since she had the procedure now.
Is the area swollen, red, warm to touch? Is the incision not healing well? If she is having these symptoms then you should take her to the hospital to be evaluated by a doctor familiar with central lines. Especially since she has a fever. You don't want to miss an infection. An urgent care doctor will not know how to care for her.
If those are not her symptoms, can you just feel the line of the catheter protruding slightly? If your daughter is thin you will probably always see and feel the line of the catheter. I can see mine sticking out from my chest going down to my port.
Hopefully you will get to talk with the IV nurse soon. Maybe she can come out for your next dressing change. You may feel better having her around to answer questions and make sure that you do everything right until you get comfortable with it.
Please keep in touch and let us know how she's doing.
Posted by Rumigirl (Member # 15091) on :
Does she have a port or a hickman?
Either way, she shouldn't be having those symptoms at this point.
Either go to the ER and ask for a dr who knows about central lines (but they may not know about them!), or, better, make an emergency call to her IV nurse and have her/him come out and look at it. Or see the dr/nurse who put it in ASAP to check it. But it should be checked pronto, like tonight or tomorrow am.
Don't assume that she is covered by her IV abx.
Just saw that you said you'd hear back from the IV nurse on Mon. That's not good enough! Your IV nurse should be available 24/7 by phone and should come out ASAP for emergencies/suspicious symptoms. Don't wait until Monday---tomorrow am, no later. And if anything gets worse before then, go to the ER.
Don't mean to scare you, but . . .
Get on this pronto and let us know what happens. If it's sepsis, there is no time to lose. (not saying that it is, but it's a distinct possibility).
If you go to the ER, put in an emergency call to your LLMD, or dr who ordered the line, so they can be in touch with the ER dr. Otherwise, the ER drs may be clueless about the central line and what to check for.
Posted by LymeMom Kellye (Member # 24807) on :
The IV nurse is across the country. If I call I will get a call back very quickly. I don't have a home health nurse. We are on our own. Nurses available M-F by email and phone. 24/7 by phone.
It's much better this evening. No fever. No redness. I really think its because she's been coughing non-stop for the past 10 days. She had the cough about a week before her line was placed. But tn the 11 days since the cough has been getting worse.
The upper incision is fully healed. It's not warm and not red. Today the fever is gone. I think that I didn't realize how far the line stuck out and it scared me. She's thin so it protrudes more than it would on me. I appreciate all of the feedback. I think that it's ok. If it swells up more we will head to the ER. I am also going to hire a home health nurse. This is way too serious to handle w/out one.
Thanks again for everything!
Posted by Rumigirl (Member # 15091) on :
Yes, you DO need a home health nurse, esp for times like this, and esp in the beginning.
Do you have insurance? If you do, you should have nursing coverage, even if insurance is not covering your IV abx. They do have to cover taking care of the central line.
If for some reason you don't have home nursing covered, you could get care at an infusion center, like a cancer center, in-network. You'd have to set it up ahead of time, check into coverage, get a dr there to authorize port care, get it preauthorized, yada, yada.
I'm glad that it is looking better. Better take care of that cough! It's not a good idea to go into port surgery with a cough or cold, but it's too late for that now!
Posted by LymeMom Kellye (Member # 24807) on :
Hindsight is always 20/20. I told the LLMD about the cough. But at that time it wasn't nealy so bad. LLMD thought if would be fine.
Thanks for the ideas about infusion centers. First thing Monday morning I'll be on the phone!
I really appreciate the feedback and support!
Posted by LymeMom Kellye (Member # 24807) on :
Yeah! Our insurance is covering a home health nurse to come out once per week to do the dressing changes and weekly blood draws. I am so relieved. It will be wonderful to have a local person on our healthcare team.
Today is the last day of her zith for the bronchitis and her cough is finally subsiding. Along with that the swelling has gone down and so has my anxiety.
Thank you for your guidance and support.
Posted by sammy (Member # 13952) on :
This is good news I hope your daughter starts feeling better now on her IV antibiotics.
![[Smile]](smile.gif)
I hope your daughter starts feeling better now on her IV antibiotics.