What a week!

After we left Hopkins in early January, the plan was to wait 6 weeks and then go back to get the nephrostomy tube out that's in her kidney.  So until that time came, we were home and tried to get back to normal. Life was pretty good for the most part.  Lily went back to school which was so great and super hard at the same time.  She was behind and not used to the schedule, but after some time she started get the hang of things again. We also met with the school district, and our school nurse is now helping Lily cath at school everyday. Big milestone!
         Over the last two months, well since we got home in December, I've been keeping my eye on a little scab that was supposed to close up.  This was the where her SP tube was coming out of her skin in her lower hip area.  Once removed, it should heal up and look like nothing. The weird thing was that it wasn't healing.  It's about the size of an almond.  It was looking good for awhile, and then one day it was blistering up like a bubble.  I was super worried, and then it popped! A bunch of light green goop came out and that was it.  It didn't hurt Lily thankfully, but we were really concerned. I had called the docs and they said that sometimes when you have a tube in there, it's like a long narrow space that needs to heal.  It was probably just some leftover stuff pushing to the surface and it would eventually close up.  It did close up and was fine for a little while, until it happened again and again and again.  It just was not getting better.  It was one more thing we had to deal with, always having to make sure it was clean and covered.  I told Dr G that we needed him to look at it when we came back to get her tube out and he agreed.
             Then last Tuesday afternoon I had Lily with me at Benny's office getting work done. Her blister thing wasn't looking good that day and leaking some gunky stuff.  We were changing the gauze when I noticed there was some brown stuff coming out.  I thought "that's weird" Is it dried up blood? Is it just getting darker?  Then for some reason I thought to smell it.  Immediately I knew . . . it's poop!  Poop is coming out of the side of her body! What the what!!!!! I literally froze for a minute and was brought back to the night before her big surgery in October.  The resident was going over all the possible risks  . . "there's a possibility of leaks in her bladder, there's a possibility of leaks in her colon and bowels . . ." I remember thinking, ok but that's very rare and probably won't happen.  However, all I could think was, there's this little hole on her hip, and if there's poop coming out, that means there's poop on the inside of her pelvic area.  Poop floating around in her body.  I panicked!  Right away I emailed Dr G.  I called the hospital to track down the resident on-call. Dr G emailed back pretty quickly and said "I'm in Jamaica, but we're on it. Big worries" Ummmm, that did not make me feel any better.  The doctor that usually sugarcoats things has said big worries! I then soon after got a call from the resident. We chatted for awhile.  I told him everything that I had seen up until that point. We already had a flight to come out there in a week, but there was no way I could wait that long to see them.  We needed to know asap if there was a leak or if it was something different.  I was really scared this time.  He said that she definitely needed to be evaluated asap. So the options were to take her to a local doc (nope) or to fly there soon. I said I would go start looking for flights and figure it out. We'd be there sometime tomorrow!  Benny was on it and found us a red eye that night. We packed in 3 hours, and I had no idea how long we'd be staying.  Thank heaven for my parents.  My mom is a saint! She came over to help with the boys that night.  I dropped everything and so did Benny to make this work.
            Before we knew it we were already at LAX.  It was a whirlwind. That night was torture.  I thought I would sleep but got maybe an hour.  It was brutal arriving in Phillidephia at 6am, really 3 am our time.  Lily was a trooper and slept most of the way.  We got to Baltimore around 9am and just drove straight to the hospital to be admitted.  It was so crazy.  The nurses and docs were all ready for us and knew we had flown all night.  They were really great. Since Dr G was out of town, we would be dealing with the chief resident who I talked to the day before, and Dr Dicarlo.  They knew the situation and came to check things out.  As much as I'd like things to move quickly, it just never does.  It's a lot of waiting, and consulting, and examining, and more waiting.  But after they looked things over, they were not too worried,  Lily was not showing signs of having poop in her body.  She was actually feeling fine, where she'd be really sick if there was poop inside. There was no mass, and nothing hurt to the touch. This was reassuring. We met with another doctor who is a general pediatric surgeon who works with cases like this. He recommended we do a couple tests to start looking for the issue.  We started with a CT scan on Wednesday, followed by a fistulagram on Thursday. The answer was clear. She has a fistula. What's a fistula?? I really didn't understand or get what they meant.  Well a fistula is when a hole forms between two organs, like bowel to bladder.  It can happen lots of ways.  When Lily got that SP tube pulled from her hip, it was like a hollow tube for awhile until it healed.  Somehow in all that, her bowel attached to it and formed a hole between them.  Almost like another little pathway for her poop to come out.  He said it's very small and very encouraging that it's not like pouring poop out constantly.  And there is NO poop getting into her body. Phew!! That was a relief. But it does need to get fixed. He said it's not an emergency, but since we are here, its a good time to take care of it.  It does require a surgery, which is more cutting and the whole thing.  UGH! So frustrating! We are just checking off every risk on the list from this surgery.
           Now back to the other issue - the kidney.  We still have to deal with that back tube coming out.  We did a test on Friday for that.  We tested to see if the tube could come out, and it looks really good.  They said it looks like the tube we kept in for 6 weeks did the trick! This was really good news to hear, but we knew we had to test it over the weekend to see for sure. Dr G is back this week and we meet with him tomorrow to go over the plan for the week.  We'll see how her kidney is looking and figure out when to fix the fistula.  I'll update more soon!