Surgery Scheduled and Mysteries Solved

Whew, what a week!  I have so much to catch everyone up on! 

First off, I found a grey hair today.  Ah!

Ok, ok, that's not very big news.  At 32, I guess I can expect to find a few grey hairs here and there.  I wasn't very happy, though!

Now for the real news....

On Saturday, Dr. Zuniga, our urologist, gave me a call about Madi and upcoming surgery.  We talked through some questions I had, and we chatted for quite a while.  I always appreciate a doctor who will call you on the weekends and not rush you; it speaks volumes about the kind of doctor they are.  Basically, before I completely commited to surgery for Madi, I wanted to make sure there was no way around it.  I talked to him about a few different procedures and medication and whether or not they would work for her.  He really thinks, for her situation, the vesicostomy or augmentation are what she needs.  He is very conservative with surgeries, so I know that if he is recommending it, it is really needed.  We opted for the vesicostomy for now.  I scheduled her surgery this week for July 1st (Monday).  We will likely only be in the hospital one night, but we shall see.  We will also get her dye study while we are already in the hospital with an IV in place.  I need to order some cloth trainers, but want to see the positioning of the vesicostomy first.  I'm thinking custom waterproof trainers with a "t" absorbency and a high waist-band.  Now to find someone to make them for us without charging a million dollars.....

On Monday PCH called us to schedule Ramya's dye study, and wanted us in that day, so we headed down.  I know I already blogged about the dye study, so I won't repeat that part.  The doctor called me to talk about the study on Wednesday, and answered some of our mysteries for us.  He said he wasn't worried about the urine getting in to the vaginal cavity.  Apparently it's pretty common and not a big deal. Whew!  Sounded crazy and scary to me, so I'm glad he's not worried.  Sadly, the tubing for Ramya's mitroffanof is just all wrong.  He really thinks it's not fixable.  He said he thinks we are going to have to go in and re-do it all :(.  I'm trying so hard not to be angry, but this is the surgery I asked them not to do on her, but couldn't stop because our adoption wasn't finalized yet, so she wasn't officially ours.  She went through all of that for nothing, sat there alone in pain for nothing, because it's all wrong.  Grrrrr....  The momma bear in me wants to fly to India and yell at someone really badly.  I suppose it's not all for nothing, as it did fix her renal reflux, so I am actually thankful for that.  He also thinks she will need the augmentation surgery, and would do both at the same time, but I don't think I'm ready to do something so big, so I think we will wait a bit, as long as he feels it is safe to do so.  He also wants us to see a general surgeon about her MACE surgery that isn't working correctly, so we head there in a few weeks.  The good news is that he feels we can try to take her off of her prophylactic antibiotic.  We are going to try just our more natural methods and see if it's enough to keep UTIs away.  I'll have to do a seperate post one day about all of the natural supplements we use with the girls.  Anyhow, she is officially off of her antibiotic for now... wooo hooo!

We also saw our naturopathic doctor this week, Dr. Vitaro.  We love Dr. Vitaro and I'm glad, after over 4 months of having Ramya home, we were finally able to get in and see him.  Conner informed Dr. Vitaro that he is like a naturopathic doctor, because he tells me to put on my amber necklace for headaches, instead of using Tylenol.  He thinks he may want to be a naturopathic doctor when he grows up.  He's not sure, though, if he wants to do that, be a karate man, or be a stock or bond trader.  Such big decisions ;).  Dr. Vitaro thinks that thyroid testing for Ramya may be a good idea, because of her early breast development (but normal hormone levels) and lack of weight gain over these 4 months.  I had to drop off some paperwork to the pediatrician so I wrote him a note about this and we'll see what he says.  Dr. V also told me how to try and get the wax out of Ramya's ears (the drops the pediatrician told me to get weren't working), so that's my next adventure with her.

Next week we have two plays we are going to, a few play dates, and some doctor's appointments.  Madi also gets a feeding therapy evaluation to make sure that her pickiness is pickiness and not a feeding/muscle issue.  Hopefully we will get some answers there.  That's all for now; please keep our little Madi in your prayers as we prepare for her surgery.  The doctor says it's a simple one, so we are praying for no complications and a fast recovery!

Our Plan of Action

Today Madi had her urodynamics test and we saw Dr. Zuniga again.  We got a few more answers to the Madi urology mystery and now have a plan of action.  Madi's bladder starts to become high-pressure with very little urine in it.  Although her bladder holds a decent amount, she has a lot of pressure in it most of the time.  Cathing more often won't help, because we would basically have to cath every 30 minutes or something crazy like that to keep her pressure low enough.  She doesn't leak, because her muscles work well, but this actually works against her because that means when the pressure gets high, there is no where for the urine to go and it doesn't leak out, so it goes back up.  This is also explains her kidney damage on the side the reflux is on.   Because of this, the bulking agent to fix the reflux won't actually solve her problem.  Even if we did that surgery, she'd still have the high-pressure bladder.  He said the two options we have are either the vesicostomy or an augmentation (they could do the mitrofanoff surgery then as well so she could cath through the belly button).  The vesicostomy would take away the pressure and reflux (hopefully) for now, but it's not a long-term solution.  It is generally a pretty easy surgery with not many negative side effects.  The augmentation is a permanent solution, however, it can't be undone.   It also carries a little more risk as there is more risk for stones, etc..., once it's done.  Usually the augmentation surgery is done when a kiddos is a little older than Madi, and he has never done the surgery in a child Madi's age (4), but he would be open to doing it if it's what we wanted.

David and I have prayed about this decision and both feel that starting with a vesicostomy is the way to go for now.  Unfortunately, Madi will have to go back in to diapers (right now she uses reusable cloth trainers) or pull-ups (we will most likely get pull-ups, and will try to find some cloth ones that still fit her or try to find some cloth ones that can be made larger to fit her), but we feel that choosing this surgery, until she is a little older and can decide for herself, is what is the best for her.  She will likely have the vesicostomy for a few years, and then we will go from there.  Hopefully there will be some better surgery options then, but if not, that's ok to, because at least Madi can help be part of the decision making process. 

The surgery scheduling people from the hospital will be calling us within a few days to schedule Ramya's dye study and Madi's surgery.  They also still want to do the dye study to examine Madi's kidney function, so we will see if they can do this while we are in-patient for the vesicostomy surgery.  The nurse said she thinks the surgery will be July 10th, but she's not sure if the hospital has that date open, so at this point we aren't really sure what the surgery date will be.  Dr. Zuinga thinks we will only have to be in the hospital for a day or so after the surgery, so that's not too bad.

Thanks for praying for us and our sweet little gal, and please keep her upcoming surgery in your prayers as well!  We know God has a plan for her to give her HOPE and a FUTURE and we are so thankful that these options are available to help her little body!