PICC lines and recess?

[mneville]

Aidan is about to get his 6th PICC line put in. I want him to be able to continue recess and gym but his CF doctor says no. Aidan is a very physical kid and needs these opportunities. Making him miss them will make him hate CF and PICCs even more. I think the likelihood of him getting it pulled out are very slim...Help?

Megan

 

[Ratatosk]

Would it help to speak with the gym teacher to find out what types of activities they are doing to reassure your doctor or make sure they're going to do something that he can participate in. And I'm sure by now your son knows what he can and cannot do with a picc, so he'd be cautious. It's not like they allow rough-housing during recess, so he should be fine.

 

[mag6125]

My doctors always told me I could do pretty much whatever I wanted with a PICC in. I've played softball games and gone through a hockey practice with a PICC in so I don't really see the problem. If you wrap an ace bandage around it that'll keep it from getting caught on anything.

 

[hmw]

I would also think that this time of year, the addition of long-sleeve shirts and coats to cover it up would help when it comes to recess, too. I'd suggest even offering to have the dr ask Aidan personally if he knows what he can and can't do with a picc in place (i.e. if you are on the phone with him.) if Aidan can tell him on his own what he knows he should avoid, that might help> some drs don't give our kids enough credit and Aidan has proven to be pretty responsible for quite some time already.

I hope you can get this worked out. I agree, he has been through a lot and having to sit by the sidelines while his friends play for a long course of iv's would be really hard on him.

 

[mneville]

SOOO frustrated! I just spoke to CF nurse and they will not give us a note saying it's okay. Last year when the teacher made him sit out, Aidan was SO upset when he came home. I spoke to them and they finally agreed to it. It was fine. But the CF nurse claims they had no idea he was participating in sports with the PICC. She said it could separate if pulled on and since it's attached to his heart, it could cause major problems. This will devastate him. He hates CF so much right now and this will send him over the edge. I think we just won't send him to school. I am just sad. Right now he is on a schedule of IVs every 3 months with sinus surgery. I never imagined this would be his life..

 

[hmw]

I am so sorry. I can definitely understand how devastating that would be to an active little boy!! How long will this course of iv's be?

 

[Mommafirst]

Oh Megan, I'm so sorry. This makes me so sad and you can tell Aidan I hate CF too, right there with him.

Do you think you can negotiate with the CF nurse a bit. Like agree to let him sit out of gym as long as he can participate in mild recess games. You can even put one of those arm restraints around the picc site at his elbow, so that there is a rigid thing that will keep him from beding and/or catching the picc in any way. I would appeal to their reasoning that there needs to be a balance between normalcy and Cf life.

This sucks and answers my own concerns about this for Alyssa. ((((HUGS)))

 

[TonyaH]

Well, first of all, the picc line is not "attached" to his heart, and even if it is pulled out a bit it would not be an emergency situation. However, the end of the piccs are placed in a certain location so medication can be delivered effectively. It is important that they stay in the right place and that the end of the line does not occlude the vein, making flushing nearly impossible and medication infusion very difficult.

Some hospitals still stich the line into place at the insertion sight to keep this from happening. Ours does not. Aside from the stat-loc and dressing cover, the line could be pulled very easily.

I do understand your point, and kids need to be kids. Andrew's clinic also says no PE and we follow their advice. Contact sports involve alot of bumping and pushing. However when Andrew is at home he runs outside with his friends and plays anything that does not require physical contact with others. Oh, and he stays off the trampoline. In face, he's outside running around in the yard right now and currently has a picc.

There has to be some middle ground for your son. Maybe agree to follow the no PE rule, but ask his teacher if there are recess activities that do not involve contact with other kids. Or, make sure you provide him plenty of opportunity at home to play outside with friends in a way that is safe for his picc, but allows him the physical activity his enjoys...and NEEDS!

Good luck!

 

[ekleary]

I don't mean to be negative, but I don't think that "negotiating with the nurse" is the best solution. She is looking out for your son's best interest. You certainly can make your own decisions, but trying to sway her to change her decision doesn't make it any safer. I'm sure her reasoning has to do with the fact that trauma to the PICC can cause dislodgement, sepsis, or pulmonary embolism. Keep in mind, your healthcare team may be the bearer of bad news, but they're not the bad guy.

 

[TonyaH]

Erin,
That is an excellent point!

 

[mneville]

I know its best for him. I guess it took me by surprise because he always did recess/gym before. Apparently the CF center didn't realize that. It's just been so emotional for him,he is the kind of kid who NEVER sits down. He goes to school for gym and recess.I always told him he could do everything but swim with a PICC line. I was wrong. He needs IVs every 3 months now so this looks like it will be a struggle for a while. Just bummed.

I was just asking the nurse what he could do? If a modified gym would be okay? But I think he'll just stay home for a few days..Thanks!

 

[hmw]

With needing IV's so often, would a port be a better option for him?

 

[biz]

awweee megan i am soory you and aidan are goin thru this. i think keeping him home is the best thing for you and him. maybe you can find something "special" for him to do to make up for this. my aidan just got his second picc line put in on wed and hes only in school 3 days a week for 3 hours i asked if he can still go and they said yes. ofcourse aidan knws the rules with his picc. everyone keeps his hands to themselves and his doc said he can do everything but go on trampoline.

i dont knw if you do this or if you can ask but i have aidans picc lines put in his chest. its so much easier then his arm. he is also very active and never stops. its always covered and i usually double up on the shirts. and a nurse told me to buy tank tops a size smaller and put that on first so its a snug fit.
----------------------------------------
Elizabeth
mama to Aidan 4 w/cf

 

[crickit715]

Originally posted by: ekleary

I don't mean to be negative, but I don't think that "negotiating with the nurse" is the best solution. She is looking out for your son's best interest. You certainly can make your own decisions, but trying to sway her to change her decision doesn't make it any safer. I'm sure her reasoning has to do with the fact that trauma to the PICC can cause dislodgement, sepsis, or pulmonary embolism. Keep in mind, your healthcare team may be the bearer of bad news, but they're not the bad guy.

I totally agree with Erin...unfortunatley i think that often we as a CF community and we as CF parents tend to "push" the mentality that CF'ers arent "any different" (i hate to say it that way..) than anyone else and they can do EVERYTHING everybody else can AT ALL TIMES. i also understand never wanting to limit or unnecessarily restrict our kids from doing and participating in normal childhood activities. But the fact remains that things are "different" for our children and there will be times when they cannot do the same things as other children. hopefully these times will be few and far between, but the sooner we accept that this will be a reality and help our children to accept that this will be a reality the better off i feel they will be able to cope in the future. Good luck!!

 

[theLostMiler]

Well I would think the factor of staying active would come into play... exercise really is sooooo great for cf'ers. When I had piccs I didnt everything I normally did. I went camping, I played games (soccer, ultimate frisbee, bowling). And secondly the picc isnt attached to the heart at all. My home nurse told me once that the location of the tip of it isnt as important for antibiotics as it is for things like TPN, granted thats all I have for evidence. If its his 6th one, he knows his limits, you can wrap up a picc line so easy with the netting, a shirt, the ace bandage like said.


I hope he doesnt take it too hard, and Im sorry he has to be on ivs so much. If you do look into ports, they are sooo nice b/c you can take it out and actually take a shower once a week if you want b/c you arent accessed. and if your doc wants to just do a 2 week thing, and then see what happens symptoms wise then you can be deaccessed and normal instead of lugging a picc around "just in case".

good luck

 

[theLostMiler]

oh and my very first picc line I had, I was doing my ball and I had a laundry basket in my hand and kinda just let it go, instead of bending over to set it down, you know kinda dropped it on purpose. Well the line got caught on the basket and yanked on my line. I was freaked, but it was sutured in and only bleed a little bit. My home nurse checked it out and I think the sutures may have been a little torn, but otherwise I was fine. Im not sure if a stat locked one would have done the samet hing but I feel like it would have. if nothing is hanging out, how can it get caught and pulled out?

 

[mneville]

Thanks everyone. I kinda shudder to realize what we had been letting AIdan do with the PICC line. He is just SOOO active, having him take it easy is kinda torturous for all of us. So now we're just taking more precautions and playing quieter games. Although tonight he already forgot he was dragging around the ball and the whole thing got stuck on something as he pulled away quickly. He just can't slow down. The 3 year old and crazy dog don't help the matter!

But I have it covered with a sock and the attaching line ( which is really long) this time taped down. So we should be good. I appreciate all the feedback and will let him continue on with a balance of exercise and precaution! He is going to miss school this week and will go back next week. Maybe take the IPAD during recess and gym to play with!

Thanks again.

 

[lilywing]

I just want to add my experience with PICC lines (before I got my beloved port!):
I tried to work out once, and by the end, the insertion site was leaking blood and obviously required a new dressing. The picc was still working, but I was kinda freaked out by the blood.
Also, the line can move without a great deal of activity. The nurse measures the length of the line outside the arm, and if that length "grows", the picc is no longer in the right place. I was VERY protective of my Picc lines (especially after the bloody-workout!) and they would still move over time.
I know it sucks to have to cut out recess and phys-ed class, but it might be a necessary sacrifice.
I know this might sound weird/harsh, but I wish that my parents didn't make me think that I could do anything/everything just like everyone else. I believed that, and so I found it harder to cope when things didn't work out for me because of CF, like when I couldn't keep up in gym class, or when I missed my high-school graduation. I wish that I had learned to accept my differences/limitations so that I could embrace my CF to a better degree, so I could live with CF, not in spite of it.

 

[LouLou]

Originally posted by: hmw

With needing IV's so often, would a port be a better option for him?

Wondering the same thing...

 

[mneville]

Thanks. We already had an episode this morning when an adapter piece fell out and blood was leaking all over the place. Good thing he wasn't in school!

I think about a port and our ENT thinks we should strongly consider it. With Aidan, it is his sinuses that give us the worst problems and I just keep hoping that something will work and they will get better. His infections start again 4 weeks after a surgery and orals don't work because the polyps block everything and the infection is too massive. So he has to get IVs to feel better,break the infection up and then a surgery. Sinus surgery 7 is next week.

I hate the thought of a port just for sinuses. His lungs are 156%FEV so he's great in that area. But the sinus disease does greatly impact his quality of life so I don't know what to do? I just keep thinking they'll get better as he gets bigger. Thanks.

Megan