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.

 

A Life Update... Urology, UTIs, Attachment, and More!

I have no good title for this post, because it's going to be a hodgepodge of updates :).

First off, I talked to the urologist and because Madi is non-symptomatic for a UTI, he doesn't want to treat her.  I have learned over the years that you don't start antibiotics unless the urologist thinks you need to. Doctors and hospitals look for signs of infection often times without taking cathing, and the bacteria introduced there, in to account. There have been numerous times we were told to treat her UTI and then her urologist reviewed the results and said not to.  I figured as much, which is why I didn't fill the antibiotic prescription the hospital gave us when we are in on Friday after the seizure/headache/projectile vomiting from Madi. And on that topic, I really, honestly, just believe her getting better was a miracle.  Once when Madi was a baby, we'd gone through heck with her shunt.  We had an infection just a few weeks after we were out from the hospital that landed us back in the hospital for almost 3 weeks.  That cleared and the new shunt clogged.  That was another 3 day stay for them to revise it.  About two weeks later, Madi was showing signs of shunt failure again.  I took her in, Dr. Moss checked her shunt, and he said that it was definitely not working again and would need to be revised again.  We spent the night and Madi went NPO for surgery in the morning.  The morning came and revision time came, but when Dr. Moss checked her shunt (as he always does before surgery), it was working again, so we got to go home.  I really think that's what happened this time too.  Madi was so very miserable.  She had the seizure, she didn't want to open her eyes, she kept holding her head saying it hurt, she was projectile vomiting, and she kept drifting in and out.  Right before the CT scan, it was as if a light switch was thrown.  All of a sudden, she was her normal happy self.  It was crazy!  I really believe God cleared that shunt for us!


Today we headed back down to Phoenix Children's Hospital.  We were there twice last week (once for each girl) and will be there twice this week (for Ramya).  We are nearing the end of the testing she will need done (for now) and I can't wait!  PCH is an amazing hospital, and we are very thankful for the care they have given our girls, but I am growing weary of the 30-40 minute drive a few times a week, and the number of hours we spend there.  Today Ramya had a VCUG to check and see if Ramya still has renal reflux.  The good news is that it does not look like she does!  YES!  That means the surgery (well, half-surgery ;)) she had in India was not a complete waste.  It did correct her renal reflux.  That is awesome!  The test also showed that she did not have the augmentation surgery when they did her mitrofanoff surgery, which is a bummer.  If Ramya is going to be "socially continent", it's a surgery she will need.  It's not a fun one, and it is usually done with the mitrofanoff surgery, so it's too bad that it will mean another surgery.  Boo.  I am very thankful that when and if the time comes for that surgery, though, that I will be able to be with her and make sure she is comfortable and well cared for.  That is something worth celebrating for sure.  My little girl will never go through surgery alone again!


On Friday, Ramya and I head back to PCH for a urodynamics test that will give us a better picture of how much fluid Ramya's bladder can hold, if it is rigid or spastic, and how quickly it leaks.  After the test, we will see the urologist to go over our recent testing and get a better picture of what we need to do.  We know she may need the augmentation surgery, we need to deal with her granulation tissue on her belly button that is driving her nuts, and that the MACE procedure she had done in India isn't looking right (placed right) and needs to looked reviewed as well.

Attachment is chugging along.  I still hold Ramya quite a bit, though much less than in the beginning.  She still prefers to sit on my lap and have me feed her, so thatly is something we do most of the time.  She also still prefers to be rocked to sleep and sleep in our bed, so that's what we do!  I have been tired lately (and seriously need to go to bed now) and haven't been as cheerful and full of life with the kiddos lately and I need to get myself caught back up on sleep.  Thank God for coffee!

Ramya's time-ins and times where she just gets in a funky and can't get out of it have been decreasing, which is nice, though they can still be pretty intense.  Yesterday we had a melt-down that lead to a time-in.  She was very upset and yelling at me and told me "me no like you, momma!!".  I wasn't sure if I should laugh or cry.  I told her I'm sorry she feels like that, but I still love her very much.  She wasn't too fond of that answer, but it's the truth :).  I know she was just upset at me for enforcing rules she didn't want to follow, and I know that she does enjoy spending time with me, but it still made my heart a bit sad to hear those words.

Ramya's English is getting better.  She is understanding more and more every day and is expressing herself more and more.  She has just discovered a love for salad and asks for "tiny bites" of mine all the time.  She still loves eating beans and meat, and could eat them all day long!  She's also discovered a love for peanut butter and jelly sandwiches, which is really nice since it's a snack I can easily bring when we are on the go.


 I'll be back later to update with Easter pictures. All the kiddos loved Easter.  Conner told me that in Church he learned that Easter isn't about eggs and candy.  It's about Jesus dying on the cross for us because he loves us so much.  He talked a little about what exactly that meant too.   I was quite proud of him for expressing what he learned (we had talked about it at home as well, but I wasn't sure if anything sunk in), though he still woofed down the candy and was giddy about the egg hunt ;).  Madi loved the hunt but wanted nothing to do with any of the candy.  Ramya loved the hunt, loved the boiled eggs, and thinks the purple jelly beans are pretty nice as well. 


I think I about covered it all for now!  I'll be back with photos and more urology updates soon!
 

Whew... Only 2 More to Go!

We are almost done with our few weeks of appointments.  It's been a rough few weeks for sure!!  We've seen the orthopedic surgeon, the neurosurgeon, the urologist, the pediatrician, the dentist, and we've had multple tests.  Next week we get to pick up Madi's HKFOs and get her wheelchair adjusted and then we are DONE!  WOOO HOOO!

Conner had to get a spacer put in a spot he had an absessed tooth that had been pulled.  We went in last Thursday at 12:20 pm.  He did great and is very proud of his new silver spacer. 

The poor guy couldn't eat or drink 3 hours before his appointment, though, and was really hungry.  I decided to take him for his first visit to Sonic and he LOVED it.  He sat in the front seat with me and we ate together and talked.  We were there about 45 minutes because he kept deciding he was still hungry and ordering more food :).  I spoiled him and let him get a nasty cherry slush that was probably full of red dye, lots of sugar, and high fructose corn syrup.. YUCK!  He sure loved it, though.  He has decided that every time he has to go to the denstist, he and mommy need to have a Sonic date.  He's such a cute and sweet little boy!



The wait to get in to see the doctors have been long, and it's taken lots of creativity to keep Madi entertained.  Here we are checking Mr. Potato Head's head circumference.  He seems to check out ok ;).

Of course, we tried on his glassess too.

Although the waits stinks, I am very glad that Madi has a team of doctors who spend time with us and really care about her as an individual.  Seen here is Dr. Moss, her neurosurgeon.  He is really an amazing guy and has fought for Madi since before she was born.  He is happy with how Madi (and her shunt) are doing and doesn't need to see her for another year!  He feels her seizure was most likely caused from the MMR vaccine and does not recommend further testing at this point, unless the seizures continue.  I am also happy that he has a special place in his heart for Ramya and is eager for her to come home.  His daughter has two adopted boys from Korea, and he is one proud grandpa!

Madi wasn't too fond of the urodynamics test to see if she still has renal reflux.  She actually did great during the test, but walking in the room and seeing that big machine just did her in.  Poor baby.  She wasn't fond of the wait for that test either.  Lukcily Child Life came with an iPad in tow and she lit up.  She layed completely still for the entire test while she watched Mickey Mouse Clubhouse.  I've decided iPads are the BEST!  I'd love to get one some day!  It would sure make our appointments go smoother!

Today we saw the urologist and we discussed Madi's urodynamic test results.  Madi still has grade 5 renal reflux on the left hand side, which I already knew (I saw it on the screen during the test).  I'm bummed about it, but it is what it is.  He isn't ready to try and correct it yet and wants to watch it a bit longer before doing anything.  He did say her bladder was holding a good amount of liquid and he was very pleased with that.  Yeah!  The wait for urology was actually pretty short, thankfully.  Child life also came back with the iPad to entertain Madi, which made her VERY happy!

We seriously need one of those things!!

I've tried to have lots of fun with the kiddos when we aren't at our appointments.  We've seen movies, gone out to yogurt, gone on treasure hunts, finger painted with pudding, and lots of fun things like that; it seems to help.

(such a goofy little guy)

In other news, Kyla, the ntee we have staying with us for a bit, officially graduated highschool... YEAH!  We are VERY proud!!











We are still waiting to hear back on our NOC and hope to have it soon.  We have our little gifts for Ramya all packed and ready to go.  Once we get our NOC, we can send them off to her.  I can't wait for her to know we are here waiting for her!  My awesome friend, Kimberly, gave me a code for a free shutterfly book, so I made one for her all about our family with lots of pictures in it.  We also are sending some books on adoption, a book about plane flights, some knee pads, leg warmers (her poor knees were so sad looking :(.  Hopefully these will help!) a stuffed animal, a little blanket, and I think that's it for now... Oh, and a photo album.  We only have a set amount of space to send things in, so we have to limit what we send.  There is one thing I know for sure...

That's all for now!  Stay tuned for photos of Madi's new up-ups (HKFOs) next week, and please keep praying for that NOC to go through.