Wednesday, August 19, 2020

That Wonky Port!

Kira Jean had a venogram/angiogram performed this morning, to see what is going on with her veins and her port. This port has outlasted many a ports I am told. She has had it in for 10 years, and though it has migrated to the fatty part of her armpit, due to her severe scoliosis, it was still working. Up until our last port flush. Once a month, we go in to have a saline flush and then Heparin pushed in, where it sits, trying to block any clots from forming. With Covid being out of control in our city, I have been scared to death to take her in, to have it flushed. I kept pushing it back, so I did not risk Kira picking Covid up at the hospital. I just know that if she got it, this would be the fight of ALL fights for her! So, what I ended up doing is possibly creating an issue with her port, making us have to go in to the hospital WAY more than her in & out flush. UGH! It "may" not have been me though. The line will flush, meaning you can PUSH things in, but you cannot pull back on it. This is definitely neccessary, as my child has like zero veins to get blood from, and so this port is our only hope when she needs labs. The first step was an x-ray to see if there is a kink, possibly caused by all of the internal shifting & dancing it's doing. I peeked at the image, and it did not look kinked. Which led us to today, the venogram. Afterwards, the Dr. told me that he does not see a DVT (blood clot) like she has had in the past, but the issue lies at the tip of the catheter. He said there are no clots in her superior vena cava or elswhere that was imaged, which is a great relief.. but something WILL need to be done with this issue. He wasn't sure if the tip of the catheter is pressing against a wall, so when they try to pull back, it collapses, or there may be a piece of fibrin sheath covering the tip. So now we wait. He will forward the results to her specialists and I will get notification on the next step. I would HATE to put her under, but if it needs to happen, I am hoping the entire line can be moved back onto her chest, where it SHOULD be and once was. It would mean much less pain for her and way fewer pokes, trying to get into that angled, wonky, ancient port! But oh what a GIFT this port has been! Now I feel bad for calling it names, it has been SO good to her and hung on when others would have given up years before! SO with that, I thank you sweet port! You aren't ancient, it just may be time for you to finally call it a day. Job well done.