Hi all - we just got back from clinic. Jason is 7. His small airway numbers of his pft's have always been lower than they should be. He was dx. at 18 mos. of age. He was very sick at dx. and when a bronchoscope was done, pseud. was present. He has cultured pseud. maybe 3 times since then. TOBI usu. clears that right up. He has been pretty healthy all along. He is not usu. tired and keeps up with all of the other kids. He is big for his age so no problems. there. The dr. feels as though we should try 2 weeks on iv antibiotics to see if his number would improve. Depending on his culture results from today, they might also suggest a bronchoscope to see if something nasty and undetected is causing problems with the small airways. I understand the thought process - but right now I am really having a hard time with him looking and feeling good yet his numbers are bad so not to take any chances be aggressive with the treatment. As all of us do, I hate this disease! I figured the time would come that we would have to put him through this, but I hoped it wouldn't. The dr. said usu. they put the picc in on a Thurs. and you stay in the hosp. until maybe Sunday, then go home on home iv's. He said usu. for 14 days. How often and how long do the iv's usu. run? Can they still go to school? I know they cannot swim, but can they still play and run around when the iv's aren't running? Do the picc's hurt? Are you sedated when they are inserted? Do they sometimes need to go longer than the 14 days the dr. is planning on? Do you have to go in the hospital to have them removed? I should have asked the dr. more questions, but my mind sort of froze! I will email him tonight. I would welcome anyone's experiences to help to answer some of my questions. Thanks.
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picc line/tune up questions
- Thread starter JoAnn
- Start date
Emily65Roses
New member
My IVs have always run exactly 14 days, but I imagine they go over sometimes for whatever weird reason. Yes they can still go to school. I go to school, I work when I'm on IVs. You're right, they can't swim. They can play and run around as long as they're aware the line is there, and it can't get caught on anything. I would also make sure the teachers or whoever are aware that the line is there, and to be watchful of other little kids. They can be monsters. Haha. The PICCs don't hurt once they're in, really. It feels weird, but they weren't painful. Some people get sedated when the PICCs are put in, I did not. They just put numbing cream (Emla) on the spot, let it sit, and then go for it. You do have to go to the hospital to get them removed, but it's a VERY quick procedure. They just have to pull the line the right way so that the veins don't contract around the line and snap it off, because then you've got pieces of PICC line running around your bloodstream.
One thing you might want to take into consideration that no one ever really told me...
I got phlebitis with EVERY SINGLE PICC I ever got (there's nothing I could've done to avoid it). Basically the vein gets irritated with the line. There is chemical and mechanical phlebitis. Chemical is when the vein is annoyed by the meds. I always had mechanical phlebitis, which means basically the vein gets irritated that the line is just sitting there. My arms would get all sorts of sore, and after a day or two, you could actually see a red line along my arm exactly where the PICC sat in my vein. If you get phlebitis this bad, they need to pull the line and place a brand new one, so you want to avoid this if possible. The best way to avoid this problem (they tell you, but they never really go over it, because not everyone has this problem) is warm compresses. After my first problem with phlebitis, I kept heating pads on the PICC arm any and all times I could stand it. The last PICC I ever had before we resorted to a port was while I was on vacation on a beach in July. I spent 23 hours a day (allowing myself a one-hour break) all week with hot compresses taped to my arm. We bought those throw-away heating pads that require no electricity. And even with the pads on most of the day, I still had mild phlebitis. I was able to keep the same line in, but my arm was always sore. Not to mention it was July, so I felt like I was dying of heat stroke. I obviously had a VERY big problem with phlebitis and PICCs because no one should have to wear heating pads the entire time a PICC is placed. However, if your son's arm starts to get sore (further north than the entrance site itself), definitely try heating pads. Just place them on his upper arm.
Either way, I've had several PICCs and several problems (so in case you have what if questions, I may be able to help), so if you have any other questions, feel very free to ask. <img src="i/expressions/rose.gif" border="0">
One thing you might want to take into consideration that no one ever really told me...
I got phlebitis with EVERY SINGLE PICC I ever got (there's nothing I could've done to avoid it). Basically the vein gets irritated with the line. There is chemical and mechanical phlebitis. Chemical is when the vein is annoyed by the meds. I always had mechanical phlebitis, which means basically the vein gets irritated that the line is just sitting there. My arms would get all sorts of sore, and after a day or two, you could actually see a red line along my arm exactly where the PICC sat in my vein. If you get phlebitis this bad, they need to pull the line and place a brand new one, so you want to avoid this if possible. The best way to avoid this problem (they tell you, but they never really go over it, because not everyone has this problem) is warm compresses. After my first problem with phlebitis, I kept heating pads on the PICC arm any and all times I could stand it. The last PICC I ever had before we resorted to a port was while I was on vacation on a beach in July. I spent 23 hours a day (allowing myself a one-hour break) all week with hot compresses taped to my arm. We bought those throw-away heating pads that require no electricity. And even with the pads on most of the day, I still had mild phlebitis. I was able to keep the same line in, but my arm was always sore. Not to mention it was July, so I felt like I was dying of heat stroke. I obviously had a VERY big problem with phlebitis and PICCs because no one should have to wear heating pads the entire time a PICC is placed. However, if your son's arm starts to get sore (further north than the entrance site itself), definitely try heating pads. Just place them on his upper arm.
Either way, I've had several PICCs and several problems (so in case you have what if questions, I may be able to help), so if you have any other questions, feel very free to ask. <img src="i/expressions/rose.gif" border="0">
Hello JoAnn,
My name is Linda and i have an 8 year old daughter with CF. Kait has had 3 PICC lines in her 8 years, she does really good on them and actually she just got her line pulled almost 2 weks ago. This time her line was in for 3 weeks, in the past it has always been 2 weeks, Kait was positive for pseudomonas and MRSA. Kait was actually running around and playing, going to school and she did not look sick at all this time, which i thought was weird as well, but, she had more of a cough than normal for her so i had a feeling that something just was not right. She comes home with her line and she has 2 other siblings so to keep her down is not possible. She still played and attended school.( i kept her home from school most of the time) because i am one of those overprotective mothers!!!! but i think that is ok to a degree!!! After 2 weeks with the line the doctors thought about pulling it but i thought best to keep it because her PFTs were not quite back to her baseline. we kept the line in for another week and then she continued oral antibiotics for another 2 weeks. I honestly always want my daughter treated aggressively!!! She is not on antibiotics that much right now anyway. I would rather her to have a PICC line than to treat with oral antibiotics, they just seem to work much faster !!!!
I hope this helps you !!!
kaitsmom<img src="i/expressions/rose.gif" border="0">
My name is Linda and i have an 8 year old daughter with CF. Kait has had 3 PICC lines in her 8 years, she does really good on them and actually she just got her line pulled almost 2 weks ago. This time her line was in for 3 weeks, in the past it has always been 2 weeks, Kait was positive for pseudomonas and MRSA. Kait was actually running around and playing, going to school and she did not look sick at all this time, which i thought was weird as well, but, she had more of a cough than normal for her so i had a feeling that something just was not right. She comes home with her line and she has 2 other siblings so to keep her down is not possible. She still played and attended school.( i kept her home from school most of the time) because i am one of those overprotective mothers!!!! but i think that is ok to a degree!!! After 2 weeks with the line the doctors thought about pulling it but i thought best to keep it because her PFTs were not quite back to her baseline. we kept the line in for another week and then she continued oral antibiotics for another 2 weeks. I honestly always want my daughter treated aggressively!!! She is not on antibiotics that much right now anyway. I would rather her to have a PICC line than to treat with oral antibiotics, they just seem to work much faster !!!!
I hope this helps you !!!
kaitsmom<img src="i/expressions/rose.gif" border="0">
I usually do IV's for 14 days, unless I am not doing as well at the end of that time as my doctors want, in which case we'll go ahead and do 21 days. I never had trouble with PICC's, they usually lasted the entire time. If it starts burningor irritating him, have the nurse come look at it. I have a port now, but that's just b/c my veins are practically non-existant. No swimming with the PICC in, but other than getting it wet you can do just about anything. Since your son is only 7, just make sure he is careful and not too rough when he plays. I have never been sedated for insertion. You might want get some numbing cream if he doesn't like sticks. Just put it on about an hour before. If you are using home healthcare then that nurse should be able to remove it.
Also, I've had a broncoscopy, and it was fine. They put me to sleep and when I woke up I didn't remember a thing and several people had brought me presents! So I have happy memories of that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Also, I've had a broncoscopy, and it was fine. They put me to sleep and when I woke up I didn't remember a thing and several people had brought me presents! So I have happy memories of that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Emily65Roses
New member
Oh duh, Jenny is right. If you're using home IV care, the nurse from that company can take the PICC out. I forgot that. Hahaha.
Jo ann,
I am infusing at home right now, 1 day down 20 to go. I always go 3 weeks and I always go high dose. I like it when the pharmacy has to double check my orders because of my doses. I figure anything worth doing is worth doing right! I recently asked the PICC line question on the adult site and decided to just use regular peripheral IV's. Of course I am older and have my own personal nurse so peripheral lines suit me better. I do advise going to the hosptial first for three or four days to get in the swing of things. I have been doing these thing so long we can have a new line stuck and infusing in 5 minutes. It is sad to say but we are professionals at it!
good luck!
Luke 29/cf and tied down at least for another half hour
I am infusing at home right now, 1 day down 20 to go. I always go 3 weeks and I always go high dose. I like it when the pharmacy has to double check my orders because of my doses. I figure anything worth doing is worth doing right! I recently asked the PICC line question on the adult site and decided to just use regular peripheral IV's. Of course I am older and have my own personal nurse so peripheral lines suit me better. I do advise going to the hosptial first for three or four days to get in the swing of things. I have been doing these thing so long we can have a new line stuck and infusing in 5 minutes. It is sad to say but we are professionals at it!
good luck!
Luke 29/cf and tied down at least for another half hour
NoDayButToday
New member
I am always sedated for my PICC insertions. I haven't had any trouble with them, knock wood. I also do home IVs and am a pro now. Some meds are 3x/day, some are 4. If your son is up to it, he can go to school, provided scheduling works out. I prefer to stay home, rest and focus 100% on getting well. He can play when not infusing, within reason. Would I do hardcore sports? No. Would I play toss or something like that? Sure. I usually do 3 weeks of IVs, but when I was younger I did two. Good luck
PS: Yep, my line is removed while at home, by my homecare nurse
PS: Yep, my line is removed while at home, by my homecare nurse
My daughter has had two bronchoscopies. She never cultured anything with throat swabs, but was exhibiting a lot of breathing problems (rapid breathing, retracting). The first bronch showed pseudomonas, the second stenotrophomonas. She has still yet to culture pseudomonas with a throat swab, although the steno showed up on her last throat culture.
She's on TOBI one month on/one month off. The TOBI usually stops any of her flare-ups, but if it is not working, I.V.'s always do the trick.
Maria (mother of Samantha, 2 years old next month)
She's on TOBI one month on/one month off. The TOBI usually stops any of her flare-ups, but if it is not working, I.V.'s always do the trick.
Maria (mother of Samantha, 2 years old next month)
Hi - thanks so much for all of you responses. I always feel just a little bit better with the more unanswered questions I have. Kaitsmom - when have you told your daughter that she was going in to get the picc line ( the night before, the morning of, earlier than that? ) I know he will be scared as it will all be unknown. He really hates the blood work and even the throat cultures. I know I can't do anything to take away the fear. It is hard because he doesn't feel sick and he only understands what he can about cf at this age. I already know how I will explain why he needs this done, but am dreading telling him and really dreading watching him go through it. I love him so much that it hurts.... I Know you all understand. Thanks again!
JoAnn
The last time we were in clinic and i knew Kait was not so well so she was right there when the doctors told us, we stayed for 3 days and she knew that day that the next day she would get her line put in, she was nervous and stayed up alnight, i stayed in the hospital with her , the next morning they took her back at 8:00 a.m. it is real scary!!! I am not goiing to tell you that it is easy but it does get easier, they did sedate her and let her father and i go back until she was finally asleep, ( not long) and about 30 min. later she was back in her room, sound aslee4p for most of the day, she was tired from lack of sleep the night before. I am honest with Kait about her doctor visists and her disease, we are very open, i think that if your child can trust you then they will feel more secure!!!
Everything will be fine, try not to worry so much, i feel IV antibiotics are much faster and work much better!!!
Keep me informed, I pray everything goes well.
kaitsmom<img src="i/expressions/rose.gif" border="0">
The last time we were in clinic and i knew Kait was not so well so she was right there when the doctors told us, we stayed for 3 days and she knew that day that the next day she would get her line put in, she was nervous and stayed up alnight, i stayed in the hospital with her , the next morning they took her back at 8:00 a.m. it is real scary!!! I am not goiing to tell you that it is easy but it does get easier, they did sedate her and let her father and i go back until she was finally asleep, ( not long) and about 30 min. later she was back in her room, sound aslee4p for most of the day, she was tired from lack of sleep the night before. I am honest with Kait about her doctor visists and her disease, we are very open, i think that if your child can trust you then they will feel more secure!!!
Everything will be fine, try not to worry so much, i feel IV antibiotics are much faster and work much better!!!
Keep me informed, I pray everything goes well.
kaitsmom<img src="i/expressions/rose.gif" border="0">
LindseyRose
Member
I remember what my dad used to do when I would go in for tune-ups when I was younger. Just an idea since you said your son hates bloodwork and such. He used to give me a dollar each time I got stuck with a needle, a few more dollars for harder procedures, even when I cried. (Because it's okay to cry, it hurts!) I would keep a running total for the whole time I was in - and believe me, I didn't forget any<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then he would give me the money when I got out so I could buy myself whatever I wanted, as a reward for being so strong.
NoDayButToday
New member
I think it would be best to be honest with Jason about the PICC/IVs and NOT to spring it on him right before you go into the hospital. Try to emphasize how much better he'll feel afterwards, and that IVs are not a punishment type thing, but instead a good thing for him. I was first in the hospital when I was 5, and I was aware of where I was going well before I was admitted. My mom has always been open about CF, and I'm very grateful for that.
Hi Coll - We are always honest with Jason. One of the things that is hard to explain to a little boy that just turned 7 and feels perfectly healthy is how this is going to help. He is a worrier and I don't want him to lose too much sleep over this. It is always easier to tell him what has to be done after he has experienced it once. Not that I want to keep doing this, but I think you understand. Thanks so much for your suggestions. Jo Ann
NoDayButToday
New member
Hi JoAnn, I just wanted to clarify that I wasn't implying you were dishonest with Jason, sorry if it came off that way. It is a bit harder to explain to him how this will make him feel better if he feels alright right now anyway! Good luck-- and I understand what you mean about how it gets easier to discuss health things as you gain experience with them. <img src="i/expressions/face-icon-small-smile.gif" border="0">