And again

The past two days have been two of the most stressful days in recent months.  Everything seemed to be going great after we got home from the hospital last Friday, but everything went down the crapper Sunday night.  Sometime around midnight or 1 AM, Bill went in to pick up Stephen from his crib and rock him a bit and soon after I got a panicked, "Lindsey come quick!"  Bill and Stephen were both soaking wet because his catheter had literally fallen apart.  In the middle of a dwell, his catheter came apart at the seams.  There's is a connection between the catheter tubing that comes out of his belly and the connector piece and some how that connection came apart so all of the fluid that was dwelling in his belly had come out and he was now open to the air and germs.  I tried as best I could to patch it up and we called the doctor to find out if we should take him to the ER.  Because he was already on antibiotics from the peritonitis, she didn't have us bring him in, but we stopped dialysis and I was told to bring him to see the dialysis nurse in the morning to get it repaired.

Monday morning his dialysis nurse repaired the catheter and gave me the news that I'd need to get Stephen home and hook him up for dialysis for the remainder of the day and night; 18 hours.  That meant that Stephen was "chained" to his bed and surrounding area for the next 18 hours.  Not an easy feat for a 10 month old.  Lucky he wasn't feeling good again yesterday and took a really long nap and Bill's Mom came over to help me occupy him for the rest of the time. 

But then lightening struck twice today.  This morning I checked in with nephrology and was told that Stephen would need to be on 24 hours of dialysis today to try to get rid of the extra germs he got from the catheter breaking. But when I connected him again this morning at 10AM, his catheter line was full of bubbles and air; signaling to me that something wasn't right.  I searched and searching and finally find it....a small hole in catheter.  AGAIN!!  That's what caused his peritonitis back in April!  But because we repaired his catheter once before, repairing it again would really shorten it and I was sure they were going to admit him to the hospital to replace it.

Luckily his dialysis nurse was able to repair it today with an extension, but it's only a short-term fix.  The catheter needs to be replaced and that means another surgery for my little man.  We're hoping that they'll be able to fit him into Dr. Kim's (Stephen's surgeon) schedule next week, but the big caveat is that he can't have any kind of infection.  And it might take a week or so until we can get all of the infection cleared out of Stephen's belly.  So in the meantime, we're back home, Stephen's on dialysis and playing on the floor next to his crib, while I finally grab a few minutes of "peace" in his rocking chair (if that's even possible). 

But I made it crystal clear to his doctors today that this surgery better be done in time for his to be home for Christmas because there is not a chance in hell that I'm going to let him be in that hospital for another holiday, and especially not Christmas!!

We got back to see the nephrologists tomorrow, so hopefully they'll have conferenced with the surgeon and come up with a solid game plan.