Any doctors or nurses or IV experts or handholders?

[SundayWorriedParents]

Any doctors, nurses or IV experts who can reassure or just anxious parents of young adults who can help please?

DSD is 20, lives with me and DH. Her mother has not been involved in her life for many years. She’s fiercely independent, smart and sensible. She has cystic fibrosis. I’ve been with her dad for 7 years and I’ve lived with her since she was 16. As she was at the age where she was transitioning into adult services, she was encouraged to lead her own care and I’ve never interfered. DH and I are a bit worried though.

Last week, she had a longline IV cannnula placed for IV antibiotics. She’s had the drug before, can competently manage home IV and carries on like normal during treatment. She’s currently 250 miles away, staying with friends. On Friday evening, she got severe pain in her arm, shoulder and chest when administering a dose. She developed a large swelling near her armpit. She contacted the out of hours consultant and they advised to stop treatment and return to the hospital on Monday. She can’t get back until Monday night so she’ll she said she’ll go first thing on Tuesday.

I don’t want to question her or nag but I’m a bit anxious about it being a possible blood clot and wondered if it really should wait?! She’s never had complications like this before. Apparently the on call respiratory doctor said there was no need to go to A&E but said symptoms will improve if she ceases infusions. She said pain and swelling is better but not gone. I’ve suggested she phones again tonight if she’s uncomfortable but she was noncommittal. DH wants to drive and get her right now but doesn’t want to question her judgement and cause a ruckus.

She calls me mum. I adore her and respect her massively, as does DH, but we are concerned she’s worried about her weekend fun and not considering the bigger picture. We’d both sleep better if we knew she was being seen tomorrow but perhaps we are being overly worried and it’s only a broken line not a clot. So, tell us straight please if we are overreacting. Definitely not said anything to her, except that we are here to help if she needs anything.

Thanks in advance for letting me ramble.

From what you’ve described/what the doctors response was, it sounds like they think the end of the cannula has slipped out of the vein and the antibiotics have gone outside of the vein, which would cause pain and swelling (a ‘bubble’ of the liquid where it collects in the tissue, rather than flowing in the vein) immediately, that would subside over time. It wouldn’t be a serious problem except with certain medications (like chemotherapy drugs).

That said, if you/she is worried then they can do a fairly quick blood test in a and e, which rules in or out a clot related issue.

Thank you so much @Calmestofallthechickens Is this essentially infiltration?
DH messaged offered to drive down tomorrow very early and collect them all so she can get to the CF day unit. DSD said it’s too much driving for him given it’s only an extra day to wait to get a new line and get back on the antibiotics. It sounds like she knows the IV line has moved and isn’t concerned. I do feel reassured by your reply so thanks again.

Clots tend to swell the whole extremety rather than a localised lump. I would expect that the consultant adequately telephone triaged, and has safety netted by suggesting a+e if it worsens. Your dad has had years of treatment and self management, although your quite rightly worried trust a little in her instincts aswell, it's hard to have context when your far away.

Thank you @SlB09 you’re totally right, I think it’s harder to have perspective because she’s not here. I’ve never felt this anxious before but she’s a mature young woman and needs to socialise and have holidays and just have some fun.
She’s educated about managing CF and I know she’d not to do anything to risk her health. It’s easy to lose perspective but she’s under a fantastic CF team, so I’m sure they’ll have triaged her appropriately and correctly. Never had any reason to doubt their expertise before.

We’ll definitely be happier when we see her face and know she’s alright.

Yep, can't imagine the worry from a distance! Hopefully she's been seen now and all is ok x