Some Venting

This is gonna be detailed, just a warning.  I feel like I'm living in a nightmare.  And I'm confident Lily does too, but an even worse one.  First, if you are wondering why we even did this surgery, Lily has been struggling with bladder infections/kidney infections for too long.  This major surgery was something that needed to happen for her to get continent, but in most cases the kids get it a little older.  They did Lily's, who is almost 6, sooner because this surgery will help get rid of infections and protect her kidneys for good.  Not to mention that she will get to wear underwear finally.  However, it major stuff with scary recovery, which I thought I was prepared for.  Not even close.

Ok, so fast forward and here we are, surgery done, and on day 6 of recovery.  We have all reached our breaking point, and it happened today.  The last two days Lily's two sites, where some tubes are coming out of her skin, were leaking.  Like a lot of leaking. They realized that it was urine coming out, and the left stent was not draining anymore.  Not good.  Last night through the night we were changing her dressings every hour to keep them dry.  Also because of the wetness, she has gotten a rash under her bottom area.  So we were also having to lift her up and put cream and powder under there.  This morning when the docs came around to check things, they knew something had to be changed and fixed.  Its never fun when your surgeon has to stop and think of what the next best step is.  I get that he's thorough, and he is the best at this, but he sat down with us in our room and went over every possible pro and con of the situation.  I really didn't want to hear that there could be a leak in the brand new bladder that he just made and sewed together.  This last week has just felt like dagger and dagger going into my heart.  He also said a few other options too, but of course the only one I really heard was the worst possible scenario.  The conclusion they came up with was to go ahead with diverting the urine from her left kidney by putting a tube directly into the kidney and get it to come out that way.  This would mean ANOTHER time going under anesthesia, third time this week.  I was sick.  I was almost shaking with frustration and hopelessness.  But at the same time I knew it had to be done.  She has to get better and this has to succeed.  Over Lily's life, I've had to be strong.  I've had to put on a tough face and power through, even though deep down my confidence is shaky.  This week I've been strong, but I've also had more breakdowns than I can count.  It's unbearable to see Lily in pain and misery.  With each day our patience has been tested.  Today hearing that we'd had another set back was too much to take.  They said they would do the procedure around lunchtime, and hope that they can get to the bottom of it.

I went back to the Children's House to get cleaned up, but when I got there I just sobbed.  I went through some pretty morbid things in my mind of all the bad things that could happen if this doesn't work.  I know I've said that Lily's condition isn't life threatening.  But it's life changing and life altering in so many ways, and with how delicate her situation is, it's scary.  After getting that out, I got dressed and came back ready to do this.  I put on my tough face, knowing that at any minute I could crumble again.  We went through all the steps of prepping her for going under again.  The team went over all the things they will check while she's out, and hopefully fix the problem.  I was holding my breath.  Me and Benny headed back to the waiting room for the 3rd time this week.  We freaking hate that place now.  It was over pretty fast and they brought us back to her.  They did put the tube in her kidney to drain it, and said that went very well.  They did not find any leaks in the bladder (small victory)! They said that this should help the urine to empty now and hopefully get everything to dry up and go the the right direction.  Ok. We'll see.  I'm still sort of holding my breath.  Sweet Lily slept off her anesthesia like an angel, and got some good rest in.  But we knew she'd feel some pain when she woke up, so the pain meds were flowing good.  She's been doing pretty good so far.  But tonight I also noticed how much weight she has lost, her little wrists are much skinnier (more daggers straight into my heart).  I lost it again.  The nurse was here being so sweet to me.  Her name is Rachel.  My friend who told me what to expect did warn me that she'd lose weight, but I still just hurt from it.  We are patiently waiting for the NG tube to come out, which could be any moment now.  We are literally waiting for her to fart and have some stomach sounds.  But that means her stomach can tolerate food.  Tonight they are giving her a supository to make some things happen down there.  I'm really really hoping and praying for this. She cries for juice everyday and I can only keep distracting her for a little longer before I scream at everyone and demand her to get it.

So it's been one thing after the other and I needed to write this all down to vent and get it off my chest.  We just need a couple victories now.  We need to move to the next step, and not go backwards anymore.  The nurse chatted with us tonight and gave us some good encouragement.  She also told us how impressed she was with Lily, and how good she is at coping.  Lily is our hero in every way and she deserves the world after this crappy, no good, terrible experience.  I'm really hope that my next post has better things to report.