Snow days and hospital stays

We got to be home for ten days. 10 DAYS.  That is our longest stint since post-transplant when we were home for 11.  People keep asking, "Did you do something extra special or fun?"  Honestly?  Not really.  We got to be a family for the first time in what felt like forever.  We got into a real routine.  I felt like I got to know Jenna, Brody and Bowen again.  Sounds strange, but it's true. 

 

Everything was going so well last Wednesday at our clinic appointment!  Dr. Jetton was happy.  I was happy.  Blake was happy.  Then, Thursday happened. 

On Thursday, I noticed that his urine output was a little less than normal, but not terrible. Overnight on Thursday into Friday it was even less. I texted the doctor at 6:30 AM Friday morning to let her know what was going on. We were having labs drawn on Friday. Blake's kidney function number went up slightly. At 5:30 PM, I talked to the doctor and she said if Blake didn't pee by 8 PM we would have to head to Iowa City. Of course he peed. A little. Dr. Jetton wasn't really telling us we had to come for sure.  In the end, I just thought it was the right thing to do.  So, down we headed at 9 PM and arrived in Iowa City at 11 PM.

 

Long story short, Blake started to pee again in Iowa City during the day Saturday. Then he stopped peeing overnight. Two ultrasounds and a contrast test later on Sunday, it was determined that his one ureter to his one kidney was blocked. It took less than an hour for them to take him into surgery to have a nephrostomy tube (tube directly into his kidney that drains his urine into a bag on the outside of his body) in.  And for those of you with a good memory, yes, he has had one of these before.  

You all should have seen the pee. It was crazy! He just kept peeing and peeing and peeing some more. I'm quite certain that kidney must have let out a huge sigh of relief that the urine could actually go somewhere!  Blake's kidney numbers dropped so nicely.  On Sunday morning, they said his creatinine (kidney function) number was up to 1.9. Hearing that I thought I was going to be sick to my stomach.  It went from 1.0 to 1.9 in a day.  As I type this, his creatinine is 0.6 (0.3-0.4 normal for a kiddo)!

 The big question for the doctors on Blake's teams are - do we fix the ureter now or wait?  There are pros and cons to both.  Infection, is obviously the scary part for Blake having a foreign object in his body.  Getting him stronger, letting the kidney and everything else become decompressed and inflamed is a positive. 

 What we learned today is that Blake will got back to IR (Interventional Radiology), the folks that did the nephrostomy tube on Sunday.  They are going to try to get that needle from Blake's kidney, through his ureter and into his bladder so they can place a stent.  On Sunday, they were unable to get through his ureter, so hopefully everything is less inflamed and they can get it done.  The positive to doing this is that everything will be internal instead of external and Blake won't have any bag hanging off of him again. 

 Dr. Kieran (our urologist) said they have three months to fix his ureter.  Obviously, they don't want to wait that long because of the infection risk.  When they go back in, they will have to open up his abdomen, yet again (sob!).  Poor, poor kiddo.  I thought the third time was the charm, but I guess not.

 

The good news in all of this?  Blake is happy, happy, happy!  All the nurses keep saying they have never seen him in such good spirits.  Also?  We were here and we got this problem taken care of and quickly.  As far as we know, we avoided damage to his kidney. One more thing?  This is fixable. That's awesome.  

 

And, we got to do this at home.  Outside.  All six of us.  It was great.  We are looking forward to more time together very soon.  Thank you ALL for your continued support!!!