I feel as though I've explained Ashley's central line issues and lack of remaining central line access hundreds of times over the last year and a half. I'm not sure if I haven't done a good job of explaining the situation or if perhaps those asking again missed those explanations. Either way I'm going to give it another go today.
Just this past weekend as I was sitting at a volleyball tournament a physician overheard a conversation I was having with a friend about Ash's current infection and asked, "Why does your daughter have a central line?"
Its something I get asked repeatedly on the blog and it happened to be the fourth or fifth time that week. I don't know a good, short version answer for such a question. It seems that the answer leads to another and another and another question and before the conversation is done I'm asking myself if perhaps I should have answered the original question differently. You would expect I'd be good at this after 6+ years of central lines, but I'm not.
Ashley Kate receives all of her nutrition via a little plastic catheter called a CVC or central venous catheter or central line.
She requires a central line because she never had a small intestine that functioned, absorbed, or moved food adequately enough to sustain her life. At this time she doesn't even have a small intestine. If you add up all the weeks of her life that she has been free of a central line it totals just over 1 year.
She was born at 28 weeks gestation with only half of the normal length of bowel that a full term baby would be born with. ( The length of bowel doubles in the last trimester.) 13 days after her birth she developed a condition called Necrotizing Enterocolitis. Referred to as NEC. Basically her small intestine was not developed far enough along to digest food. Part of the intestine died as a result and had to be surgically removed. They removed 32 cm of small bowel that day. On September 27, 2006, at 13 months old, weighing only 11 lbs, she had a small intestine transplanted. On July 31, 2010 that small intestine had to be ex-planted from her very sick body due to severe rejection of the organ.
Ashley Kate is not able to eat, absorb, or grow from food like you and I do. She must be fed a soulution of liquid nutrients called TPN(Total Parenteral Nutrition). It is infused into her veins through her central line.
A central line must be inserted into one of 6 access sites in the body. You have 2 jugular sites, 2 sub clavian sites, and 2 femoral sites. Once those access sites are used up(usually occurs from repeated access from central line placements) life gets very difficult and surgeons are forced to get creative with placement options(such as the hepatic vein placement Ashley came home with in Aug of 2010. Not ideal, very dangerous, but worked for a short time). Eventually there are no options left and the only outcome is the patients demise from lack of nutritional supplementation. I could go on and on trying to explain how they place the catheter, tunneled, non-tunneled, etc. but I won't. Trust me it gets complicated and pretty boring if you don't live in the world of "central lines". I'll just say that all of Ash's sites are used up, collapsed, not passable by wire, or no good.
Because she has been left without another access point for a new central line to be placed we are not able to pull out her current line with each infection. Instead we choose to treat it with IV antibiotic and so far we have been blessed. Even though we have been told she's had infections that are not treatable she has managed to survive each one to date and bounce back again and again.
Her current line infection is being treated with vancomycin over a 10 day course. At the end of 10 days we will draw blood cultures(if the line is working that day) and see if they come back clear or not. Its the best we can do.
It seems to us that she is doing well with this infection. I believe the meds are working and that her central line and her blood stream is being cleared of the bug. I base that opinion on her overall demeanor and appearance. As of today we do not have blood return in the infected lumen of her central line. It comes and goes as of late. I never know when its going to work and when its not.
Ash is happy. Feeling good this week. Sleeping well. She has gone to lunch with Dave and I a couple of times and attended one baseball game. She is holding her own with this infection. She loves to be out of the house and on the go. I'm hoping as we complete this course of treatment that she will be able to get out more and more.
Thank you so much for your prayers and your concern. I'm still so humbled with each and every comment that lets us know you are walking this path with us. What a journey we are on!