Inpatient in Greenville

I'm exhausted so I'll need to make this brief.

Saturday Noah was complaining of some pain in his broviac area.  When I removed the dressing, the area was bloody and had some discharge and what looked like an abscess.  The pediatrician and the hospice nurse both felt that we should go to the ER in Greenville.  We did so and Noah was admitted with a suspected infection around his line.

The abscess drained on its own in the night and the area seemed to look better yesterday, so he was discharged and came home last night.  I did another dressing change later last night and there was more blood and quite a bit of thick green discharge as well as another abscess-looking area.  This morning when he got up there was significant discharge under his dressing and he was directly re-admitted to the hospital.

The area around the line has been cultured and antibiotics have been started.  It doesn't seem that this could be anything BUT an infection.  He isn't sick and I don't believe any of this is in his bloodstream - it seems to be an infection in the tract around the outside of the broviac.  The danger is that this could end up getting worse and entering his bloodstream.  It can be very difficult to clear these infections and last time we dealt with an infection like this he was in and out of the hospital all summer - he'd go in, get on IV antibiotics, go home, finish the antibiotics, and the infection would flare back up again.  He ended up finally getting sick and getting the line pulled.

I honestly don't know if Noah could survive a serious line infection (in his bloodstream) right now, and we need to get this taken care of right now while he is as strong and stable as he'll ever be.  No decisions have been made about pulling the line, but I should know something tomorrow.  Given the way things went last time we dealt with something like this, I want the line gone now.  I hate losing lines - absolutely hate it - but I hate the idea of him getting seriously sick even more.

He's still on the schedule for his surgery on Thursday and if decisions are made quickly enough he could get the line pulled tomorrow and replaced while he's already under anesthesia on Thursday - and we could still get home in time for our trip!

We need your prayers so much right now.  Both Friday night and Saturday night I only got about 2 hrs of sleep and I didn't sleep well last night.  I'm tired and discouraged and I have no idea what tomorrow will bring - will the doctors agree to treat aggressively and pull the line, or is this going to be a prolonged issue?  I'm honestly very worried at the thought of leaving the line in place, getting to Myrtle Beach and having this flare back up and get worse . . .

If his line needs to be replaced, we're going to push for one with 2 or 3 lumens.  Each lumen is like a separate portal at the end of his line and each lumen opens on the inside of him a few inches apart from each other - this means that we can run TPN, multiple drugs, etc. all at the same time even if they are not compatible with each other.  This would make life much easier for Noah and for Jeff and I and all of his caregivers.  We've never done multiple lumen lines before because they are a greater infection risk, but he hasn't had a line infection in more than 2 years so I don't see that being as great a concern as that was when he was getting constant line infections.

It was SO hard to get home on Sunday night only to leave again Monday morning to be admitted again.  It's discouraging for the children and for Noah and for Jeff and I.  It's harder on Noah too as some painful things like blood cultures from his arm had to be repeated since he'd been discharged and readmitted.  I am thankful for one semi-decent night of sleep in my own bed, but really sad that we had to come back.

Please pray for quick, decisive, appropriate action tomorrow, that if Noah gets a new line that we'll be able to get multiple lumens, and that we won't end up butting heads with anyone.  We had lots of that this weekend and we really need for things to go smoothly this week!!  It is exhausting, scary, and discouraging to have to push and push to get appropriate care and it makes such a difference when everyone can be on the same page and really hear what each other is saying.

Once again we're thankful for this hospital, for the state-of-the-art care and for wonderful, loving, compassionate nurses.  Matthew was watching a documentary about South Korea last night and was just horrified at the state of their "best" hospital.  He said now he understands why I'm always so deeply thankful for the hospital that we have and why I often say that there are millions of people who would do anything just to spend one night here - I really cannot complain!!

I've been updating on FB as things happen and will continue to do so with probably just one or maybe two quick blog updates tomorrow.  Feel free to shoot me a friend request at www.facebook.com/kate.estes and I will be glad to friend you if you want the more frequent updates.

Blessings,
Kate