Noah's supra-pubic catheter change was in and of itself uneventful - thank you for praying! When he was in the O.R. the anesthesiologist lifted Noah's arm to apply a blood pressure cuff and I realized that there was petechial hemorrhaging on the back of Noah's hand all along his forearm. I spoke up right away and they found more on his other arm. His nurse had given him a bath before we came to the hospital and it wasn't there then.
Since he didn't have any other symptoms there was no reason to postpone his cath change and he did just fine during the entire thing. Everything seemed fine in PACU until I stepped out to go get his glasses. When I came back in a couple of nurses were clustered around him - they had unsnapped his gown to remove the cardiac leads and saw that his central line site was looking very bad - angry red with considerable pus draining from it. His nurse and I had noted the line looking a bit worse a day or two before and a little more worse that morning, but this was a pretty significant worsening.
Unfortunately ALL of Noah's specialists are at the hospital in Greenville EXCEPT for the surgeon who places his central line so there was nothing that could be done about the situation while we were right there. Our nurse called Dr. B who ordered a bunch of labs to be done at home and who said he'd call Dr. A (line surgeon) to help formulate a plan. Our hospice nurse met us at home and did all sorts of labs.
Except for the petechiae Noah seemed to feel pretty good, so it wasn't surprising that his basic initial labs all looked just fine. We got 2 different I.V. antibiotics and an I.V. antifungal started within just a few hours of arriving at home.
Since the labs were OK and since Noah's not running a fever, we are taking a conservative approach here. We have an appointment in Columbia tomorrow with our line surgeon. The bottom line is that except for one short break (about 2 weeks) Noah has been on multiple I.V. antibiotics and antifungals since the beginning of October. We'd stopped them again about a week ago. Each time we stop, his line site starts looking much worse as does his supra-pubic site. Changing out his supra-pubic catheter isn't a very big deal and only rarely even involves a scalpel. Changing out his central line has become a very big deal. His life very literally depends on having a working central line and he is running out of places to put one. We can no longer use either subclavian artery and cannot use his left jugular either. We may or may not be able to put another line into his right jugular. There are a few other vessels that can be used but none of them are good choices, so it's really very important that we keep this line.
On the other hand, it's dangerous to continue keeping him on powerful antibiotics. Dr. B said that we may have reached the point we've been dreading - that after this course of antibiotics, we may need to keep Noah on a daily dose of antibiotics. This would be a low dose - for example, if it was a drug usually used 3X daily we might just use it once a day. The main problem is that this is how superbugs are created and it could absolutely hasten the day that Noah gets an infection that we can't treat. The other problem is that it can create serious problems with fungal infections . . . and I just found out that Noah's urine culture is growing out yeast. Sigh.
Noah's supra-pubic site is looking about as bad as it's ever looked as of today. It looked great Monday - they'd obviously put some effort into cleaning it up while he was under general - but today it's bloody, oozy, and swollen. We're just praying one of these antibiotics kicks in and helps out there.
I truly have no idea what Dr. A is going to say tomorrow. I'm taking a suitcase just in case they admit him. I'm not sure that pulling/treating/replacing the line could do. I hate the thought of putting him through considerable trauma and risking only to have the new line do the same thing. I hate the thought of keeping the line and eventually having the infection hit his bloodstream. We have no idea why he was having petechial hemorrhaging - he's clearly not septic nor does he appear to have a virus. Maybe we just nipped something in the bud by treating rapidly and aggressively. I just don't know.
I do know that I have enormous respect for Dr. A and believe that he will make any decisions with Noah's best interests at heart. We've had a wonderful four months of Noah having great quality of life, but we are fully aware that those four months were purchased for us at the expense of all of those antibiotics being pumped through his little body day after day. We knew we couldn't do this forever and just kept hoping and praying that we could stop and everything would be OK . . . that there wouldn't be any worsening in his site and that we could just keep on with this wonderful streak. I don't know if that is realistic any more. I just can't make sense of it all.
The great news is that I don't have to make sense of it all (or even make sense of any of it). I don't need to be able to figure out if we can fix this or manage it. That's God's job and He is more than faithful. It is So. Stinking. Hard. sometimes because I'm Noah's MOMMY. It's supposed to be my job to kiss things and make them better and it breaks my heart that I can't make any of this better. I don't know what on earth I would do if I didn't have the confidence that God is intimately involved and is more powerful than any drug or surgical technique or even any superbug.
I'm also thankful beyond words that Noah feels just fine. This is not in his bloodstream and he is not sick. In fact, when I came into his room to give him meds and tuck him in last night, I was shocked to see tiny scraps of paper all over the floor. When I walked closer to his bed, he yelled, "I'm Mount Vesuvius and dis is Pompeii!!!" and proceded to throw (errr, "erupt) more scraps of paper (errr, "smoke and lava") all over the place. Stinker. Don't even ask me how he got his hands on that paper or how he knew about Vesuvius. I'm pretty sure he must have roped a big brother or sister in as an accomplice! He was at it again today but forget the word "Vesuvius" and was therefore yelling that he was the Titanic LOL. He is such a funny, funny little boy. He's also just so unbearably sweet - when I went staggering in to his dark room early this morning to give him some meds, he woke up, looked at me, sighed, and told me that I was beautiful. Granted, he wasn't wearing his glasses but it was an awfully nice way to start my day. :-)
I need to run - he's still playing Mt. Vesuvius/Titanic but with his little sandbox this time. We wouldn't want THAT to explode all over his room . . .
I will update tomorrow at some point once I know what's going on. We treasure your prayers.
Blessings,
Kate
P.S. Hannah just read this over my shoulder and said that we have Doctor Who to thank for the whole Pompeii thing. I have no idea where the Titanic fits in . . . :-)
