We have been using subcutaneous remodulin since December 2016. We had a 3 day stay in the PICU to transition. Ironically 2 weeks later on Christmas eve 2016 we were back in the PICU for our third Christmas in a row with a double lumen central line infection. That was treated for 10 days and the central line was removed 1/3/2017.
There is a pretty responsive Facebook group called "
families of children with pulmonary hypertension" that is a good resource for families with questions.
I think the problem that comes up so often is "Is
this site still OK?" and it's tough sometimes to decide to change it
because it's 3-5 days of pain and sensitivity and irritability. We have done 4
sites so far, the current one being on his lower back, but to the far right
near the flank. I wasn't sure if that was going to work OK, but so far
so good, but with a code brown and a GI bug, sometimes it requires some TLC. I
have some ideas though. For instance, the site on his back, I have the tubing
looping once around the site, exiting the tegaderm at the 9:00 position and
then going across his back secured with another IV300 as a stress relief. What
I should have done was have the tubing loop around the site and exit at the
12:00 position to keep it farther away from the poop zone. Pic:
Here is a more recent picture with the just the Cleo 90 with the extra IV3000 over it. You can also see the marks where the tubing was run across his back and then a stress relief loop:
I want to try using the silhouette catheter/sites and we
are supposed to be getting training on those soon.
These are good to have:
I can get them from pharmaquip, I think they are
better than the Kendall skin barrier wipes, but using that is essential to the
site lasting and staying in place.
We had less luck with the Accredo trained method of Cleo
90, then covering with gauze and the tegaderm/IV3000 over that. It was too much
of a pain to get to it without pulling out the site or pulling on the tubing.
The basic method we adopted for the back of the arms was to prep the site with
the numbing cream, wait 30-45 min, clean with alcohol, skin prep, place the
cleo 90, hold for 30- 40 seconds, release
carefully. Once the cannula is in, we take a IV3000 (~2”x3”) fold in half and cut out a diamond
hole in the middle just big enough to go over the Cleo and put that on as an
extra securement, but it’s clear so you can see what’s going on. Next we put on
the tubing set, and loop the tube once around the site, over this I fold up a
4x4 gauze. Next we use a type of tubular dressing, either spandage or tubigrip.
I cut a piece to fit from the elbow to armpit, fold it in half, pull it up like
a sleeve and with my third hand hold the tubing in place and the folded 4x4
gauze, pull the tubular dressing over the gauze to keep it in place. With the
spandage, a few times we just used that by itself and kept long sleeve shirts
on him. The problem is there is little protection if he gets his fingers in
there. The other thing we have done is wrap Coban tape over the tubular
dressing, being mindful to not wrap it too tight, but tight enough to keep it
protected. One additional protection we do is run the tubing down his back and
secure it in 2 places with tape or IV3000 as additional sacrificial stress
relief points. Here is a site on the arm like that:
Our original site was on the right arm. We lost that one
I think because he got his hands on it and pulled the IV3000 off (this was when
we were doing the Accredo trained Cleo, gauze, IV3000 only method) and the
cannula was out of the skin and the adhesive lifted – it lasted 3-4 weeks. The
second site was Left arm, pictured above. That one lasted 4 weeks and we
noticed the dressing all in one day started coming up, so I thought maybe we
could remove the IV3000 and re secure it. The site was leaking and red and
burned the skin and left white crusty deposits on the skin. Pic:
The 3rd site we went back to the right arm and
this one only lasted a week or 2 and was bleeding, red and leaking. It looked
flat to the skin like the cannula was still in place so I gave it one more day
and then decided to try taking the IV3000 off and cleaning around the Cleo, but
as soon as I got that off I could see the cleo adhesive was not adhered and it
smelled bad. I looked under the cleo and it was oozing yucky pus like material
so I started prepping the 4th site and considered upper back because someone on the families of children w/PH facebook said he had success with that.
I decided no because William is pretty muscled up there. We thought about the
thigh, but felt like diaper zone and access to his hands was maybe not best so
I tried the lower back flank area. Bleeding site pic:
I could not do a tubular dressing, so…I modified my
method and the Acreedo method. I applied the numbing cream, wiped off with
alcohol, skin prep, placed the cannula and it failed to stick and pulled out. I
tried again and it worked. I still used an IV3000 with the diamond hole cut,
but I cut down the overall size to about 1.5”x2”. After that was in place, I
folded a 4x4 gauze to cover the IV3000 and the tubing and used a big 4”x4”
piece of tegaderm. Once it sticks, you are stuck with that position, so I also
cut a few 1”x4” strips to secure the edges if there is not at least ½” of
tegaderm bordering the folded gauze. As in the pic, we then run the tubing to
the other side, make a stress relief “U” in the tubing and secure with an
IV3000.
What else?
We don’t always change the tubing set every 3 days. I would say I change it every other
pump/syringe change but I think we have let it go 3 changes. Justification – It’s
not IV and we are not in the PICU with scary germs. With the arm sites, we
tried to peek at the site every day and get a good look and rewrap it every
other day. With the back, I decided to look at it every other day or if soiled,
and change the tubing every 6 days. So far the back site has looked great. We changed
the dressing after a big blow out poop mainly because the line got soiled and
the line is the path under the tegaderm
We usually give Tylenol around the clock for a few days
following a site change and also Benadryl.
Some days I miss IV. I know there is greater risk but in
some ways it seemed easier. Possibly it was familiarity. I don’t miss the big
pump or the longer mixing procedure every 48 hours.
The belt clip case that Accredo provides will easily
break, the stress points on the pivot for the clamp are plastic and they just
break off. We are on our third one. We did find another case and belt from Etsy
we have been using. We have a chest strap/belt we got for his vent tubing so
usually we put the case on that belt, not the one I got with the pump, but here
are the links:
PUMP CASE - The T:slim fits the Cadd ms 3 pump.
BELT - The belt for the case
Ventilator Securement band – This is the vent holder belt. I got her to add some elastic to it so it fit
better and had some give to it. It’s nice because when he pulls on the circuit
it pulls from the belt first, and not his trach right away. We have been using this with the pump case also.
