New Developments

I took Lily for some scans/xrays last night to see how things were looking from the inside. They call it plumbing, and in so many ways it is. They were specifically looking to make sure that her kidneys, mainly the left one, were draining urine down through her ureters and into her bladder.  With the contrast they are able to watch the fluid move through the organs.  We got all the pictures they needed and sent us on our way. We were almost out the doors when Coty, Dr G's admin assistant, called me and asked me to come back.  We had to do it again and get a better look. Ugh. So we did it again, and what it showed was that her left ureter wasn't draining into the bladder.  It was either blocked with scar tissue or it was just too tight.  They re-implanted her ureters into her bladder at surgery, and it may just be too tight.  Ugh Ugh Ugh.  I was not very happy to hear this news.  I was told that they would need to see Lily the next day in Radiology and they would need to do a procedure to fix the ureter. That meant yet another round of pre-op, anesthesia, and post-op. I was pretty bummed last night after finding this out.  What they will be doing is getting a better look to see how small of an opening there is and if any urine can get through. Then they will take a small wire and push it through to see if there is a blockage of scar tissue.  If there is scar tissue, they have a way of breaking it up and they would try to fix it that way.  This is the least invasive way of fixing it because it isn't surgery (no cutting), just doing it with small wires through the tubes that are already there.

I didn't sleep great last night.  My mind wandered to the worst case scenario, so I tried to pray that this would work.  So this morning came, and they called with our check in time- 1:00. Which meant no eating till then. Great. We spent the morning in bed, then finally got dressed and played some games down stairs. Lily beat me at Air Hockey every time. But I schooled her at pool. ;-) Finally we headed over to the hospital, checked in, and were back in pre-op.  It's kind of getting to the point now where the nurses look at us like "what are you doing back here again?"  Yep we're back with another issue. Today I wasn't as smiley and nice as I usually try to be.  I looked tired and over it, and frankly was just expecting the worst case scenario in the end.  All the docs came by to chat and told me their plan. I just said, sure ok.  Just do what you need to do.  I walked with her down to radiology and was there when they put her out.  Then I raced to get some food before they would be done.  They said it would be an hour.  

Sure enough, an hour later Dr Sundi, the head resident that has been with Lily through this whole journey came out.  He said he had nothing but good news for me.  I was a little surprised! He said it was the best case scenario!  He said that there was no blockage of scar tissue and that there was a small opening there.  It was just a little tight, and still just a little swollen from a few weeks ago.  So what they did was put a small tube through the ureter to hold it open until the swelling goes down.  We will prob need to keep it there until we go home.  But, not the worst thing at all. Phew! I could breathe.  

I went back to be with Lily coming out of anesthesia, which is never fun. She is super duper cranky and doesn't want anyone to touch her. We can usually get her to sleep for awhile which is great. Today she slept for an hour and then we finally got going.  By this time it was dark and raining outside, so we treked back to the Children's House just exhausted.  

I did talk to Dr G for a little in post-op, and he is ready to get things moving along.  He thinks she'll be ready to start cathing this Friday! WOW! That's a little scary to me, but ultimately the goal so we need to start making it happen.  Tomorrow is Lily's birthday!  I hadn't really thought about what to do, so I texted my sister in Caitlin in Pennsylvania to see if she wanted to come down.  She is! So we will have fun with them and try to make it a great day.  Joanna, my sis-in-law, gets here on Thursday night, so that will be awesome. Can't wait to show her around and do some fun things with Lily.   

I'm happy to be done with today, with a good outcome, and will definitely sleep better tonight!