October 25, 2010



 i like gross things but recognize that not everyone shares my affinity for all things gross. so i'm giving you fair warning.if you are not particular to blood, or if the site of it makes you queasy, woozy or faint you should just stop here and
pray for parker's PICC, raymond.
he's bleeding a lot. and we need him to STOP IT ALREADY!

we've been battling with raymond, parker's picc for the past 10 days. seems he's decided to misbehave.

he's bleeding. a lot. a picc dressing is changed once a week. so far we've got 6 under our belt in the past 10 days. pretty much had to have a nurse here every 2nd day. some days it's been twice in a day. he just won't stop bleeding. and we're not sure why and this has become a real (additional) source of stress.

raymond is nearly 4 weeks old. he should be well on his way to adult hood by now - meaning the incision site should be nearly healed by now. why now he has begun to bleed so much, no one knows. yes, PICC's can do this - but generally just in the first week or two after surgery. this is not characteristic behavior for raymond. in fact, he only bled minimally post-operative. i was surprised at how little blood there was. and relieved. now he's making up for lost time maybe. whatever the cause it is very disconcerting and worrisome.

it's not so much the bleeding itself that is the real problem right now. it is the problems that it can cause.
a warm moist environment under the inclusive dressing is a breeding ground for bacteria - the bacteria can travel up the line or into the line and cause a blood stream infection. which is not something to mess with at all. any wetness under the sterile dressing also can cause skin irritation which, in turn, can lead to infection.

parker now has the start of an infection.

big sore just above purple 'wing' - multiple smaller ones above that

last wednesday, (on visit #3 of the week), both the nurse and i noticed that his skin was starting to look irritated and a bit rashy. 2 days later, raymond had bled out again and required another dressing change. in those 2 days, parker's skin was now raw and weeping a bit. initially, it seemed that it was just in the area that is covered by the stat lock. so we decided to leave the stat lock off in hopes that this would give his arm a bit of breathing space and keep the skin from further deteriorating.

white stat lock

the purpose of a stat lock is to hold the PICC line securely in place. the PICC line can begin to slide out of the incision in the arm, especially if the body is rejecting it. the shape of the stat lock reminds me of a soother...and it is very much like a security device for raymond and it's use brings comfort and peace of mind to parker. the nurse replaced the stat lock with steri strips. steri strips serve the same purpose as a stat lock in that they secure it in place however the lock is just a better, more secure choice to use on a child. parker had incredible anxiety over losing the stat lock. my PICC is secured (and has always been) secured with the steri strips. i explained that to parker and the nurse tried to reassure him that they would be just as good as the stat. but he was still very much upset that we had to take raymond's soother away from him.

the nurse was here again monday morning as he bled out already since it was changed on sunday (which was visit #6). the rash on his arm has not improved and unfortunately has gotten worse..should it not improve over the next couple days than the nurse will have to take off the inclusive dressing and just use a guaze wrapping around the site. that is so far from ideal, especially with a kid and puts him at a much higher risk for infection.

right now, the worst part for parker, is that the dressing changes really, really hurt. he still has the standard post-operative tenderness but now he is also having to undergo dressing changes every 2 days.
the cleaning solutions sting. they get inside his incision and irritate little nerve endings. these continue to sting for several hours after the dressing is complete. i HATE that he has to keep enduring these every other day. i know how tender and sore it is for him. he is so tough and so brave but this whole drama is just plain upsetting.

all bloody again just 3 hours after a dressing change

graham and i are trying to present a calm front but it is hard to do. this PICC drama is a constant source of concern. we're worried that he'll end up losing the line. this would mean another trip to SF. another PICC surgery to undergo. more bills to pay. or far more worse than any of that, is that he could acquire a major infection.
we are grateful for the excellent care he is receiving from his home care nurses. we know that we can call them at any time. and he is being closely monitored for signs of that. his arm is not swollen. he is not running a fever. and his IV meds are being administered with no problem. that is all reassuring. as well, i have a friend who is an IV educator/nurse and she has graciously been taking our phone calls, answering our questions and pretty much been talking us down at all hours of the night. more than once, she has peeled me off the ceiling. thank you, you know who you are. :)

however, the cause of the bleeding is still undetermined and we wish we knew why or what was causing it. on top of everything, the not knowing part of this is a hard place to be.

we were in more than just a bit of a panic on sunday nite - so we called DR H's cell and left a message. he is away at a conference until tomorrow however his nurse practitioner quickly returned our call. she will be getting in touch with the surgeon to see if he can provide any insight. as well, she wanted blood work done. parker's red blood cells can be greatly impacted by his babesia infection. the excessive bleeding would make sense than if his babesia is out of control again. thankfully, parker's canadian doctor was able to phone in a requisition to the lab yesterday. we'll get the results of them when we see the doc tomorrow.

both graham and i are trying to present a calm front but this is all very stressful and upsetting. and it is just all too much for parker. he broke down the other nite. being horrendously ill, having a picc line, dosing with iv meds everyday and enduring painful dressing changes is a lot for anyone to cope with. let alone a 10 year old. on top of it all, he began herxing sunday nite. really bad. he's nearly at the 4 week mark of IV, so we knew to expect it however expecting it and living thru it are 2 entirely separate things. the first sign of it began with a migraine. than his never ending joint pain went from bad to excruciating. all accompanied by bouts of shortness of breath, chest pain, back pain. there were periods of time where he wasn't even able to speak. it is horrendous to live thru. i know, i've been where he is. i can't even begin to explain how horrendous it is to watch your child endure that. it nearly ripped my heart out. i'd gladly bear it for him. i just want it to STOP!

we all just want it to STOP ALREADY!
we all just want raymond to behave himself and STOP IT ALREADY!

we've all had enough.
please pray for us.


Renee said...

I will put Parker on my prayer list and ask my Lyme prayer group to pray for him tonight during our conference call prayer session.

Jennifer said...

Hey Shannon .. I wanted to comment on the type of dressing you're using. I discovered I was highly allergic to the typical dressing for PICC Lines (the tegaderm). We wound up having to use what I believe was called Medipore. Also we found I was allergic to the cleaning solution. So we wound up cleaning the area with only alcohol (from the PICC line cleaning kit) and letting it "air out" for a couple of minutes so it would dry completely. Then putting a piece of gauze over the insertion site and covering the gauze with the medipore.

Also I don't know if you're on Facebook, but there is a group (i'm in charge of actually) called the PICC Line Club. There are several of us patient experts there and also several nurses that insert PICCs for a living. It's not that active, but ... check it out, post your photos if you want.