Noah really needs your prayers right now. We FINALLY got his central line site to stop oozing and bleeding a month and a half after surgery. (For those unfamiliar with what I'm talking about, Noah has a large 3-way I.V.-type line that is surgically placed in his chest and threaded right to his heart. From a medical perspective, his life depends on this little piece of plastic as all of his nutrition, hydration, and meds are given through this line.)
He got a new line in October and it should have stopped bleeding within a day or two of surgery, but didn't. We've been battling bleeding, oozing, swelling, and skin breakdown almost non-stop since this line was placed. After MANY weeks of very heavy antibiotics and several trips to the wound clinic, his line started to look great so we stopped antibiotics at Thanksgiving.
Right at two weeks without antibiotics, the line started bleeding.
Yesterday it started oozing. I.V. antibiotics and antifungals were restarted.
Today it looks considerably worse.
He's in quite a bit of pain, but isn't running a fever.
Simply put, we can't afford to lose this line. Aside from the surgical risks, he's running out of places to put these lines. His veins are scarred and many are now unusable.
Over the last several days his supra-pubic line (which had also finally started looking great) has started oozing and bleeding as has his g-tube. It's been suggested a few times by one of Noah's doctors that maybe his little body is just no longer capable of dealing with the constant presence of indwelling plastic, but I simply can not even consider that. I just can't go there.
The "best guess" is that the weeks of powerful I.V. antibiotics are what got everything doing better, but we can't continue them indefinitely. They could destroy his liver and/or his kidneys and eventually he'd develop resistance to these "end of the line" types of meds, leaving his doctors powerless to fight the next infection.
I just can't believe this is happening. He was doing SO WELL. I had several happy, picture-filled posts all set to post. We had a great combination Minecraft/Hobbit party for Matthew and Timothy on Saturday, and I will get a post up. Today is Matthew's actual 17th birthday and Timothy turns 15 on the 23rd. I just have to believe that this is nothing more than a bump in the road and that all will be well after a couple of weeks of antibiotics.
Please pray that this will clear RIGHT up and that he will be well and happy for Christmas. All of his cousins are coming and he is so excited as are we all. If the line gets worse, we'll need to call the line surgeon in Columbia and see what he wants to do. That would almost certainly result in his being hospitalized.
We also have an appointment with Sleep Medicine tomorrow in Greenville. We'll be talking about his last sleep study and where to go from here. This is another area without any great options and the visit may be very difficult.
On the upside, Noah doesn't really feel bad except for hurting more than usual. He had a great P.T. session today and is having fun doing Christmas crafts and projects with his siblings and I each morning. He can hardly wait for Christmas to get here. :-)
I'll try to update tomorrow. Thank you so much for your prayers. We need to get out of this place of infected and bleeding lines and back to a place of him doing better and making progress!!!!! We are trusting that the Lord's grace is enough even when it is so hard to understand why he faces setbacks like this. Every time my mind wants to race ahead to all of the "what if's" and possible outcomes, I remind myself that there are no uncertainties with the Lord. He's known the end from the beginning and His plans for Noah are good, even if we can't see it from here.
Blessings,
Kate
