A Kidney Update

I forgot to update on the blog yesterday, but WE ARE HOME!!!  We spent last night in our own bed, and it felt wonderful!  Wooo hoooo!  I slept from 8pm until 6 am straight, which is a lot of sleep for me.  Here's a little update, then on to the kidney news :).

Monday night was not a fun night.  They couldn't get her tube to drain, though it was draining around it well, like Dr. Zuniga said it likely would.  Starting at about 1 a.m., they kept coming in about every 30 minutes trying to get the tube (that was draining the vesicostomy site) to work.  They kept trying to flush it, thinking it was clogged.  It was hard to sleep with them coming in and out, but we got some sleep here and there.  Dr. Zuniga came in at 6:30 a.m., checked her vesicostomy, and saw that the tube was out, which is why it wasn't draining.  He said he was going to take it out anyway and so he wasn't concerned at all. 

We had two different tests that needed to be done, and they were scheduled for 3:00 and 3:30.  The first test was to check her kidney function and the second was a swallow study.  We hung out, did crafts, visited with friends, then we went off to the studies.  The swallow study went well and we saw that Madi is not aspirating on her food, which is great!  It also doesn't seem to be getting stuck in any little pockets in her throat or anything, so that is great news.  She coughs quite a bit when she eats, and it's reassuring to know that it's not anything too problematic.  We went back to our room and were discharged about an hour later, getting us home at about 5:30.  Our friends Ryan and Leslie brought us a very yummy dinner and it was great to rest and eat a yummy meal as a family!

This morning I got a call from Dr. Zuniga, our urologist (I say "our" since every one of my kids has seen him; even Conner!).  He wanted to check on Madi, we chatted a bit about Ramya and her urinary stuff, and then he checked Madi's kidney scan so he could give me the results from that.  Her left kidney should be functioning at about 30%.  The results of the scan said 1.5%, but he said you really can't even measure that low, so it's likely some where between 1.5 and 6%.  So, basically her left kidney isn't really working at all.  My heart sank a tiny bit when I heard that, but then came the good news.  Her right kidney doesn't look like a typical kidney of a child with spina bifida (which is often times smaller, shaped differently, etc....).  Her right kidney is actually larger than normal for a child her age, but it's a good thing!  It functions super well, and makes up for the lack of her left kidney function.  He said her blood labs showed completely normal kidney function and that you would never know her left kidney doesn't function, because her right functions so well to compensate.  I asked what that meant in the long-run, and he said as long as her right kidney stays healthy, which it should, that she shouldn't ever need a transplant or dialysis or anything because it functions so well.  He compared it to what he sees with kiddos born with only one kidney.  He did say, though, that if the kidney doesn't grow/start functioning better with her having a vesicostomy, we may want to think about removing it.  He said since it's not really doing anything anyway, but still runs the risk of getting an infection, if we are in there for another surgery anyway, we may want to remove it and then not have to worry about it getting an infection or have to worry about the reflux that was on that side.  I'll have to research that a bit more but we don't have to worry about that right now anyhow. 

Madi is healing pretty well.  She had some pain this morning but felt better when I gave her some medicine.  She also has some pain when I change her diaper, but other than that, as long as she is sitting or laying and resting, she doesn't hurt too much any more.  I'm so glad!  She really is such a trooper and such a sweet little girl!

Thank you so much for all of your prayers for my little gal.  We really appreciate you!

Our Kidney Answer

We went to see Dr. Zuniga, Madi and Ramya's urologist, today and got some answers about Madi's left kidney. 

(Just as a refresher, Madi was having an ultrasound done and the tech stopped about half way through, looked at me, and said, "so what's the story on her left kidney.".  Well, other than the fact that she has renal reflux and her left kidney is smaller than the right, I wasn't aware that there were any problems with her left kidney.  Our appointment with the urologist wasn't for a few weeks after the scan, so we waited to find out what was wrong)

Dr. Zuniga said that her left kidney hasn't grown at all this past year.  In fact, it may have gotten smaller.  Her scan from a year ago showed it was bigger than this years scan showed.  It could be due to an error in the scan that it is showing up smaller now, but either way, it still hasn't grown and that is an issue. 

Because Madi hasn't really had many UTIs, and hasn't had any that were symptomatic, he doesn't feel it is due to damage from that.  He thinks it's likely due to the fact that the renal reflux (she has grade 5) is keeping the blood from flowing correctly and her system from working correctly, and is basically keeping it from growing correctly.  We go in for another test tomorrow (urodynamics) and then will talk about surgery options to fix the reflux based on the outcome of the test, and possibly another test as well.  Dr. Zuniga said he may want to do a test where the inject radio-active material in through an IV (sigh) and then watch what happens when it gets to the kidneys.  This would tell us how her kidneys function, instead of just knowing the size of her kidneys.  There is always the chance that her little kidney functions really well, even though it's much smaller than it should be.  Or, it may be that her kidney hardly functions at all.  

As far as surgery goes, we have a few choices, but reflux surgery for a child with spina bifida is more complicated and there aren't any "easy" solutions.  The first option would be to go in and inject a bulking agent to try and bulk up the ureter and keep the urine from refluxing.  This is an out-patient, minimally invasive procedure, but it only has about a 40% chance of helping, at best.  It is, however, something worth trying.  The second option would be a vesicostomy.  This surgery would relieve the reflux and pressure to the bladder/kidneys, but is not a long-term solution.  Whenever it is closed up, there is a great chance the reflux will come back.  It's also not typically done with children Madi's age, due to the fact that it means the child will have to use a diaper, and they start moving towards "social continence" for children approaching school age.  For Madi, however, because she will be homeschooled, we don't have to worry as much about social continence and can focus more on doing whatever we need to get that kidney growing, so I do see this as an option for her.  The next option is one I don't love.  It would be the mitrofanoff surgery.  I am not against the surgery in general, and think it can be a great thing to bring freedom to kiddos and adults, however, it is a permanent surgery where many things are reconstructed.  If Madi were to have this surgery, it couldn't be undone.  That means if another, better, treatment option came available, she wouldn't be able to try it.  I would really prefer to wait to do this until she is older and could make that choice for herself.  With so much coming up on the horizon, in terms of medical advancements and new surgery options, I'd hate to make a permanent choice for her if it wasn't completely necessary.  If it was what had to be done to save her left kidney, though, then it is something I would obviously consider. 

Please be praying for David and I as we make some tough choices about how to help Madi.  It looks like she will have another surgery headed her way, and we are praying for clear direction on how to proceed and best help her.  We'll update everyone after our next set of testing and appointments.