A Quick Medical Update

Let's see, where to start....  A few weeks back I had to take Ramya to Thunderbird hospital outpatient center for some hormone testing.  She needed an IV (boo...) but did well with it.  With her dark skin and skinny squiggly little veins, they had a bit of a hard time getting started, but were able to only poke once, and numbed the area first so it wouldn't hurt too bad.  She held my hand and snuggled in to me and did well.  The whole test took about 2 hours, from set up to completion, so not too bad.  We watched TV, played ipad, played with toys, etc... We will have the results next week when we go see the endocrynologist.  All her blood tests have come back good so far, so they aren't sure why she's developing so early.  Hopefully this test will give us some more answers.

Last week Madi went in to be casted/fitted for a new set of HKFOs.  She got her last pair about 1 1/2 years ago and they just can't be adjusted any more for her, so it was time for a new pair.  She picked plain old pink, with ladybug decals.  We go in the second week in September to pick them up.  It's great timing too because then... we are off to Disneyland!  Wooo hoooo!

 

 

 

 

 



Thursday we head down to see the urologist.  Madi's vesicostomy is getting very tiny, and I'm afraid it might close up.  I want to have him look at it and make sure he doesn't want us putting a cath in there a few times a day to keep it nice and open.  Thankfully it seems to be working well and it doesn't bother her.  She's figured out how to SHOOT urine out of it when she's sitting on the potty, though, kinda like a squirt gun.  She thinks it's hillarious.  Oh the joys of 4 year olds :). 

 

Oh!  I also got a call today that our shower chair will be delivered on Thursday!  I'm so excited!  It's been a really long wait to get it, but I know it will be worth the wait.  I can't hold Madi (or Ramya) in the shower any more, due to their weight and being slippery, so this will allow them to take showers again.  Yeah!  I'll post pictures as soon as we get it I'm sure :).

 

That's all for now!  I'm beat and off to bed.  I hope you are all having a blessed week!

A Quiet Week and a Cute Video

This week we had a much needed quiet week at home.  We had no doctor's appointments, no dance, no karate, and only our 2 in-home therapies.  It was wonderful!  I got so much organizing done and even caught up on a little bit of work that I was behind on.  Wooo hooo!

Madi's vesicostomy is healing up nicely.  It doesn't seem to bother her any more, and though she has asked me a few times why she needs it, she is ok with having it and being in "normal" pull-ups again.  I am very thankful for that!

Here's a little video I took of the girls singing today in the car.  They are so cute.  I love when they get along this well (notice they are holding hands).  Though it's very obvious that they love each other, they are true sisters, and do their fair share of arguing as well ;).  They sure do love to sing!

 

A medical update for Ramya and Madi

Earlier this week, I took Ramya in to see a general surgeon about the MACE surgery she had done in India.  Dr. Zuniga, our urologist, wanted to see if Dr. Bae (the general surgeon) could get it working, or if he even thought we needed to.  Dr. Bae reviewed her files and the MACE site and said he believes that the MACE isn't really usable. Normally the MACE would go in at the very beginning of the colon so that you could flush the entire length of colon.  Ramya's was put in at the very end of the colon, though, which doesn't really help her much.  If we decide to try and do surgery on her bowels to help her empty them, she will need a cecostomy tube.  He reviewed some of her past x-rays and said that, while she is not distended or impacted, she does have a lot of stool throughout her entire colon.  If that is her "normal", then he thinks she will likely need the cecostomy.  My goal this month is to clean her out and try to keep her cleaned out so that we can see if we think it is necessary for her to have a cecostomy tube inserted or not.  If she does, we would wait until we do her bladder surgery and do it all at once.  I'm trying not to be bummed about all of these wasted surgeries from India, but it is so hard.  Her MACE isn't usable, her mitrofanoff isn't usable, and they did a bladder neck tightening that isn't helping at all.  I hate that I couldn't be there advocating for her, but I am so thankful that I am now!!

Madi went in to Dr. Zuniga, our urologist, today.  He said her vesicostomy is working well, but it is swollen more than he thinks it should be, so we have an appointment in two weeks to go back and have it checked out again.  Other than the swelling, he is pleased with how it is all working.  Yeah! 

I have been thinking about Madi's kidneys lately and am just so thankful that her right kidney is big and strong and is taking over for her left kidney.  God is so so good and I am SO thankful for His protection of my beautiful girl! 

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!

Vesicostomy Surgery Success

Today was Madi's vesicostmy surgery.  Check-in was at 8:30 and we were actually on time, which is big for us!  We got checked in, got taken back to pre-op, talked with our urologist, Dr. Zuniga, and talked with the anesthesiologist, then went back for surgery at 10:30.  I told the anesthesiologist I'd like to go back with her until she feel asleep and he happily obliged.  Some make you put on your tough momma look first, but he said it was my choice and that he was fine with it.  I was so relieved!  I had to wear shoe covers, a full suit, and a hat, so I was pretty styling ;). 

 

 

I was so glad I was able to go back with her.  Once we got back to the room she took a look around and said, "Momma, I'm scared!"  I reassured her that everything would be ok, held her hands, and sang to her.  She was out in just a few minutes.  I always hate the part when they start flailing their arms while they are falling asleep and you have to hold them.  I was glad to be the one to be there to do it, though.  I told her I loved her, gave her a kiss, and walked to the waiting area.  Man that walk is rough!  I hate having to leave. 

 

They came and got me about an hour later to let me know that the surgery went well.  There were no complications or anything during surgery, and Dr. Zuniga was able to quickly accomplish what he needed to.  They were also able to get the IV in her foot, which is always wonderful, since she doesn't feel it there, so it can't hurt/bother her.  He told me there was a temporary tube draining the vesicostomy site that would come out the next day, then warned me that it would be leaking around the tube and not so pretty.  He was right ;). 

 

When I went back to see Madi she was not a happy camper.  At first she was sleeping, but then she woke up and started crying a lot.  She was angry because I wouldn't take her home and kept hitting me and yelling at me.  They gave her something to calm her down, along with pain medication, and then she fell asleep for a bit in my arms.  After she woke up, I got her to drink some water, eat some snacks, and we got her a movie.  That helped a ton!  We waited in post-op for a bed for quite a while, over 3 hours.  We could have technically left sooner, but there was just no open bed for us yet. 

 

We finally get settled in a room at almost 4:00 and it was nice to be in a bigger place with a nicer bed.  Madi was really hungry, so we ordered her favorite meal here; gluten-free noodles with marinara sauce and a tiny bit of cheese.  I put on a movie for her and she went to town on her noodles, then all was right in the world again.  We limit tv time at home, so she's in Heaven having it be unlimited here!

 

 

 

Ramya, David, and Conner came to visit, and Madi enjoyed that a lot.  We also had visits from some of our friends; Our friend Leslie and her daughter Riley, Our friend Charles, and our friend Kim, her mom Lynn, and her two little Mayzie and Dutch (Mayzie is a inpatient a few floors down from us and we were happy they let them escape to visit!!).  Madi enjoyed the little gifts they brought her and she also really enjoyed the company.

 

Madi is recovering pretty well.  I think she feels some pressure/spasming in the bladder, as she tells me she has to go potty and starts getting upset.  This is usually about the time when the pain medication is starting to wear off.  They have her on morphine and/or Tylenol with codeine when it hurts.  We try the Tylenol first (per my request), but then give the "big guns" if that's not enough to help her. 



 

Tomorrow at 1pm they will start the kidney test.  They will put the dye in her IV (you know, that fun radioactive material ;)), and then 2 hours later, they will see how her kidneys are doing with it.  We also need a modified barium swallow study (for something totally unrelated, but that's a whole different post, and more radioactive material.. woot! ;)) and we are hoping to get that done while we are sitting and waiting for the other test.  After testing, we get to go home... wooooo hoooo!  Oh, she will also get the tube out tomorrow so that the vesicostomy is just open.  It looks a little gnarly right now (I've been changing her gauze, so I see what it looks like under the gauze, and it aint a pretty sight!), but it should start looking a lot better soon.  There is still some blood coming out of the tube, but more urine now.  Madi is sleeping next to me in bed, and I think I'm about to join her.  She seems quite peaceful right now!

 





We are thankful for the peace we have in knowing that God is in control.  He takes great care of our girl!  A big "thank you" for all of your love and support for Madi and our family during this time.  Your calls, texts, messages, and prayers mean more than you will ever know!  We are so thankful for our village and we love each and every one of you!  I'll update more once we know the results of tomorrows testing. 

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!

 

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.