[MotherWhimsey]

Since they seem to be the thing to do these days. just kidding. We do have several kids who have just gotten them though.

We might be getting a port or line soon so we can do IV dextrose at night instead of GI feeds because of neuropathy of the intestines. We'd just make up for the feeds during the day with longer pump time. I'm fine with that as long as he's not in so much pain at night.

But in thinking about our options as far as access goes, and I want the opinion of those that have just gone through it. Why did you get the line you did? I want a portacath so that we can just deaccess him during the day and not think twice about it. I know if your kid is going to be hooked up 24-7 this isn't a benefit so a line is easier, but why a picc over a central? Don't central lines have less risk? What about care, is it really that big of a PITA? Does anyone have a portacath and how do you like it?

Just trying to get other people's experience before we move ahead with anything.

 

[pixiekisses]

Funny you should mention this right now. We just discussed doing a line on little miss cotton ball button on thursday. Her doc called. And we're meeting him to discuss it further next week.
So I'm just going to "stay in this thread" and see what people say.

 

[irangel]

Let's see. We've had our PICC line for not even 72hrs and I started regretting the decision to do that over a central about 8hrs after the procedure.

The way it was pitched to me was that with a PICC the actual procedure to have it put in is much less complicated. Here in our hospital it's done by the "PICC team" which is a group of nurses. the procedure is performed in a procedure room off of the PICU and the intensivist is the overseer. There's no surgeon and no anesthesia involved so coordinating it is much simpler. There's also no need for intubation because they just use a sedative. When there's a problem with the line we have 24/7 access to the "PICC team" who can handle the situation and work closely with our home health infusion company to resolve the issues before we need to come to the hospital.

That sounds all nice and peachy and far preferable to a central line (or at least it did when I was being bombarded by this information less than 12hrs after our admission). The reality is that in our case, Dakota was not a candidate for conscious sedation because of her ASA classification of III. No one felt comfortable with it and thought she'd be better taken care of in the OR. So while we didn't have to get the surgeons involved, we did have to coordinate with anesthesia, probably should have had her intubated, but instead squeaked by with just gas and an oral airway.

The PICC itself is very exposed and for a 3yr old I can already tell you it's going to be hard to keep it clean. We'll be doing far more than one dressing change a week and I think if it were in a better location, say had we gone with a central line on the chest, that would have been easier. Dressing changes are pure hell though I have nothing to compare it to and I'm sure a central line would be just as bad in this department.

There is a higher risk of infection with the PICC and while they can stay in for as long as needed, often times their life span is shorter rather than longer.

When/if this sucker needs to go, we'll be in the OR getting a central. But what's done is done. It is functioning beautifully, is clean for now and our attending just came in to discharge us! I have little to complain about.

 

[supervee]

DD has a portacath. It is not a "power port"--I don't know what that is, but apparently it's something new? Anyway, hers is just a regular port, a lump of silicone-like-stuff under her skin that is hooked to a tube-like-thing that goes up into a major artery. Basically.

It is a piece of cake to take care of. She can even go swimming (not that she has yet) because it is self-sealing when the needle is out. It is pretty easy to access, using EMLA (or in our case LMX) "magic" cream she doesn't feel the needle stick much. It can be poked a lot of times, several years I think... before you have to replace it.

Cons: if she gets a fever, we have to go into the ER/clinic to get IV antibiotics b/c there is a risk of infection inside the port.

I don't have to access the port...they do it in clinic. If I had to give her some medicine every day/night, I think I would prefer a Hickman (that's kind of like a PICC, I think) so I could just screw on the meds. I might get used to the needles (do you do that already?), but not sure. The Hickman requires daily cleaning, but from what I've heard it's not bad once you get in the routine. They make special "pocketed" clothes to tuck the line in, too.

btw, before she was dx'd, they thought it was a bone infection & were going to send her home with a PICC line and 6 weeks of antibiotics... they tried several times to put the PICC line in *unsedated* -- looking back I can't believe I allowed it. Her veins became so constricted, they couldn't place it. I wouldn't allow anything like that without sedation now. Not sure if your PICC line would be placed similarly, but something to ask about.

Good luck!

 

[preemiemamarach]

We got L's picc yesterday. I asked for a pic, but the team here felt a picc would guarantee better, longer access.

We got ours mostly because of frequent lab draws. Since ds is still undiagnosed, he is having draws every other week, minimum. We'd reached the point where outpatient lab draws required an md or nurse practitioner for arterial sticks, and everything took hours and a ton of trauma for him.

We did heavy sedation, but they gave him enough ketamine to drop a horse and he was still wide awake. He ended up needing a ton of fentanyl, too, which depressed his respirations enough that he was on o2 for the rest of the day and night. Had I known he would be so hard to sedate, we would have gone straight to general anesthesia and I would have asked about a central line.

If we discover that he needs long-term access, I will definitely insist on a subcutaneous port. I hate the infection risk with the line sticking out, but we don't think he'll need it for more than a month or two.

 

[2boyzmama]

Quote:

Originally Posted by preemiemamarach We got L's picc yesterday. I asked for a pic, but the team here felt a picc would guarantee better, longer access. We got ours mostly because of frequent lab draws. Since ds is still undiagnosed, he is having draws every other week, minimum. We'd reached the point where outpatient lab draws required an md or nurse practitioner for arterial sticks, and everything took hours and a ton of trauma for him. We did heavy sedation, but they gave him enough ketamine to drop a horse and he was still wide awake. He ended up needing a ton of fentanyl, too, which depressed his respirations enough that he was on o2 for the rest of the day and night. Had I known he would be so hard to sedate, we would have gone straight to general anesthesia and I would have asked about a central line. If we discover that he needs long-term access, I will definitely insist on a subcutaneous port. I hate the infection risk with the line sticking out, but we don't think he'll need it for more than a month or two.

I'm sure you know this...but we had a slight scare with lab work drawn through Connor's PICC line last summer. They did a basic CBC because the abx he was on were so strong, and his hemaglobin came back 7.2!!! When the dr called with the results, he told me to get Connor to Children's *immediately*. We were eating dinner and I was in the middle of infusing Connor, but the dr said GO NOW. Turns out that the nurse who did the draw didn't discard enough residue, so that basically diluted the blood. A few hours later, we had an accurate CBC from a venipuncture and all was well.

 

[MotherWhimsey]

to knock Linden out for something like an MRI they have to use enough sedation to knock out a horse. But we have found one that works really really well for him and doesn't seem to mess with his respiratory issues. It's called Presedex. I don't know if you guys have tried that Rachel, but it's a good one for mito. He has to have a continuous drip after a couple of boluses, but stays out until they stop the drip. We didn't know he was so resistant to sedation till they tried to do the muscle biopsy. They gave him a spinal and ended up basically just holding him down and doing it because they couldn't get him to go out. We avoid gas at all costs. I don't know if something like the Presedex would work for a port though since it's surgical placement.

 

[Jessmomto2]

My youngest son (13 months) has a mediport also called a portacath. We've never had any problems with it. He was under general anesthesia when he got it though because he was also have a g-tube placed and a dialysis cath placement. We also use EMLA cream when the access it and he still cries but that's because of being held down. We don't access it ourselves though, they do it at the Nephrology clinic or lab. They wanted to put it in because he is expected to have lifelong frequent labs and because he's a dialysis patient they want to save his veins in case he ever needs hemodialysis. Having not had one his first 5 months, I LOVE his mediport. Before he would be tormented with needle sticks because he's a hard stick. Now it's one stick. But, we're not accessing it ourselves so I don't know if that would make a difference long term.

 

[Lkg4dmcrc]

We did a PICC line because we did not think he would have it for very long and a central line would have been surgery. He was not in a state to handle that at the time. He had it for almost 5 months (he did need it replaced once).

Good luck with your decision. I am actually thinking about putting his back in for a while. Who knows what tomorrow brings on this journey though?