The Answer to Our Mystery... is a Mystery!!!

Today I thought we were going to have a day off (boy doesn't that sound nice!?!?!?).  We had therapy planned from 10-12, in our home, and then Conner had Karate at 5:30, but the rest of our day was nice and open.  We thought we would go visit a friend who is in the hospital that we have really been missing and wanting to see. Our plans changed, though, when I got a call from Phoenix Children's Hospital (PCH) this morning asking us to come in at 3:15 for Ramya's dye study.  We headed down, got there, and they couldn't find her time slot.  I worried a bit thinking that I brought the wrong girl for the wrong dye study, as I got a call about both girl's dye studies today.  Thankfully, though, they were able to find her appointment and they got us in quickly.

The whole point of the dye study was to find out what that mystery cavity was through her mitrofanoff.  When I try to cath through it at home, I only have success about once a week.  Of course, when I cathed her through the mitrofanoff for the study, it went straight in the bladder.  go figure!  We filled it up with dye, then they had me take the cath out and try again, so we could see if we could get some dye in the mystery cavity.  Well, that's when things went South.  The catheter went down past the bladder.  They thought it came out through the urethra, but it didn't.  Somehow it entered her vaginal cavity through some mystery passage way.  Well, that, or urine was refluxing  in to the vaginal cavity.  We turned Ramya every which way, but we really couldn't quite figure it out.

After that, I slowly removed the catheter through her mitrofanoff as they put in the dye.  We didn't find any mystery cavity, however, we did find a big gap that explains the oddness we have been having.  There is a section of the tubing material (I think they used a piece of intestines) that is much wider than the rest.  One section of it goes off to the side.  So, when the cath goes in, it's easy for it to go off to the side and not down to the narrow part it needs to.  Here's kind of what it looked like, for a visual...

(and yes, I really did draw that on paint... be jealous of my mad drawing skills ;)).  So it was wider at the top, went off to the side, then got narrow at the bottom.  Where it goes off to the side is where they think the cath keeps coiling and why it's hard to get it to work correctly.

 

I'm glad to have that mystery figured out, though I'm really not sure how it can be fixed and I'm curious to see what the doctor says when we see him.  I'm also a little stumped on our new mystery, and am anxiously awaiting what the doctor says about that as well. 

 

Ramya did very well for the test and everyone thought she was just the sweetest little one (she is).  They said they are surprised I've only had her home for 4 months because she seems so comfortable and I seem to know so much about her already.  I really do think she's doing well so far.  She still loves sharing a bed with us and being rocked and held, but she  is starting to get very independent too, and I hear "I do myself!" quite a bit.  Her English is really coming along and she is learning quickly. 

 

So that's that for now.  I'll update again when I hear from the urologist.  I'm praying we can find a way to fix it or manage it, other than surgery, so please join me in prayer for that as well.

 

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!
 

A Crazy Testing and Happy Birthday Kinda Day

Today was a crazy day, but a nice day too.  We woke up, did our morning routine, worked on homeschooling, went for a walk, then it was off to the doctor for Ramya and I.  Madi's respite worker, Amy, came to help out with the other two squirrels for a bit while I was gone and before David got off work at two to take over.  First was an ultrasound, followed by an appointment with the urologist (more to come on that soon).  After that we hustled out a CT scan and x-ray series to check her shunt.  The last two tests are in preparation for her upcoming neurosurgeon appointment, where we will make sure all is well with her shunt.

There was some good news and some bad news at the urology appointment.  The good news is that her kidneys look good.  There were no abnormalities or anything found, and her kidneys seem to be working well.  The doctor said her mitrofanoff is open and working, but the reason I can't get anything out of it is because of her constant leaking.  Madi is cathed through the urethra (what I call the "normal" way, since it's normal to us ;)) four times a day.  She pretty much stays dry between cathings.  Her bladder is very slightly spastic, but mostly is not.  It grows on it's own little curve and holds a decent amount of liquid.  Ramya is a whole new story, though.  She leaks like crazy and I get almost nothing out because she leaks so much.  I feel like I constantly change her and she is constantly wet.  She seems to hold very very little urine.  For example, today I cathed her "the normal way" in the morning.  She was soaking wet and I got very little out.  I skipped her early afternoon cathing as I was trying to keep her full for her ultrasound.  I just changed her and left for the doctor.  I gave her tons of water, as she was supposed to drink a ton for the ultrasound.  When we got there, she was wet again, but the tech said there was almost nothing in her bladder.  We cathed her a little later so the doctor could try her mitrofanoff, and we got almost nothing out.  Apparently this isn't really what they like to see, as we can't really achieve "social continence" like that.  The urologist wants her to be on dithropan (which she was on in the orphanage) to see if we can get her leaking under control.  Madi had terrible reactions to dithropan and is doing fine without it, so we have kept her off and just monitor her closely.  Looks like Ramya seems to be one of those kiddos who needs it, though.  He said we also need to do a urodynamics study and a VCUG to see just how much she can hold, to see if her muscles are just too week to hold things in, and to see if she still has renal reflux (among a few other things). 

He's a little confused at the motrofanoff surgery she went through.  Normally they go in and attach part of the intestines (I think that's what he said ;)) to the bladder to help it not be spastic and also to help it hold more liquid (again, I think that's what he said, I am sure some of you out there can help me explain this a little better ;)).  He doesn't think that part was done, and he has no idea why they wouldn't do that part too.  He said he needs to do the other two studies, in addition to the reasons posted above, to help him figure out exactly what they did do, and why they did what they did.  Basically he's stumped and thinks she really needed that part of the surgery and will need another surgery since that part wasn't done.  Drat.  He's also stumped by her MACE surgery.  He said it isn't in the typical spot and he doesn't know why they put it where they did, or if it will even work right how they did it.  Double drat.  He's going to take a better look at that later, but said not to use it for now.

Ramya did well with all of the testing and I think it also helped our bonding.  I stayed close and held her hand during the tests, assuring her that they would not hurt.  She seemed to trust me and want me close, so that made my momma heart happy.  I, of course, carried her around the hospital for all of her testing and she sat on my lap while we waited.  She seemed to enjoy the one-on-one time, though it wasn't for a fun reason.  They also realized it was her birthday and let her pick a little gift.  She picked a Littlest Pet Shop set with a girl doll in vintage clothing and a spider pet with a vintage hat.  She was very excited about it all!  They also gave her a little snack (goldfish crackers and fruit snacks) which she was happy about.  Overall we were gone quite a bit, from about 11:45 am until about 5:30 pm. 

Poor Conner isn't doing well with having me gone so much.  He now has my cell phone number memorized and calls me a lot while I'm away.  I don't mind and happily take his calls when I can, because I know it helps him feel better.  Today was a call about a big scratch he found on his foot that he doesn't know how he got.  He thought I needed to know and would want to look at it when I got home.  I assured him I would examine it and kiss it when I returned home, and I did.  He called about 3 other times, but I was only able to answer 1 other time.  He played with Amy and Madi a bit, but mostly said he wanted alone time and sat in the garage.  When I got home he told me he prayed for God to bring me home faster :(.  Poor little guy.  He did have fun going to the movies with David, so that is good, but I think I'm going to have to figure out a little mommy/son date this weekend.  He is seeming to really need some time with me.

Now to the FUN part of our day!  After dinner (thank GOD for leftovers that came from amazing friends who have been gifting us with yummy food!!) we gave Ramya her presents from us and did cake.  I am the lamest mom ever and she got a piece of pre-made, individually sold, cake from the store.  She loved it, though, and, literally, devoured every single bite!  I am throwing a family party on Sunday that will be the princess and the frog theme, so she will get a nice birthday party soon.  I am thankful that she was happy with her little party this evening, though, since I felt like I didn't do a very good job celebrating.  She enjoyed being sung Happy Birthday so much that she started singing it to herself too!  She loved all her gifts, but especially loved her baby doll and the outfit for it.  I had purchased it for her at a little toy shop by our house that was going out of business and was clearancing everything out.  I've been saving it for her and I'm so glad she loved it!  Both she and the baby are happily sleeping in our bed as we speak :).  I'm not sure if she's ever had her birthday celebrated before, but I am thrilled that she was able to come home in time for us to celebrate her!

 

Opening gifts is so fun!

 

Sister, what did you get???

My favorite birthday gift!

 



 

We had to change the clothing right away ;)

 

Blowing out her candle (she didn't want to go to the table and wanted to stay sitting with her baby in her lap, so I complied ;))

 

Finger-licking-good!

 

 

Many people have asked how I'm doing, so I thought I'd just tell everyone at once.  If you see me, you will likely think I look tired.  It's for a great reason... I'm tired!  Ha!  I don't think I've slept amazingly for, say, 6 years or so (wait, how old is Conner again ;)).  It's more than that, though, (because actually my kiddos are pretty good sleepers, thankfully!!).  I'm just tired because our days are busier right now.  Even just being home is busier.  There is more holding and lifting and more emotional "stuff" lately.  There are more phone calls to figure out appointments and insurance and all that fun stuff in there too.  There are adoption reports due and meetings with our post-adoption agency.  There is lots of running around and appointments, though I put off anything I can.  Conner and Madi have regressed a little and are needing more momma time.  And, amongst all of that, there is the typical hustle and bustle of life and housework.  There is also time with my hubby, which is just so needed and important, and worth every second!  I am thankful, though, that being a mom, and especially a mom of a child with special needs who needs occasional ambulance rides and hospital stays, has well-prepared me for life's busyness.  I have this supernatural ability to run effectively on minimal sleep, to go abnormal amounts of time with no food, water, shower, bathroom, etc..., and be able to manage a household and retain information (mostly ;)) from the doctors.  I am, of course, exaggerating a bit, as really, I am taking pretty good care of myself.  I make sure to sleep 7-8 hours a night, eat healthy(ish... lately I've been not doing very good in this area) meals, exercise, and get some "me" time in once everyone else has gone to bed.  However, I am still drained.  A second cup of coffee in the afternoon (if Starbucks wasn't so expensive, I'd have a major addiction going on there) has become part of my new routine and keeps me going.  I have started biting my nails again and am back down to sad little stubs.  I am happy to say, though, that I am still going, mostly with a smile on my face, and that is what matters!

 

Another question I get a lot is how people can pray for us.  Here are some ways you can pray...

1. That we can find peace and joy amongst our doctors appointments and the things taking us out of the home
2. For Conner and Madi as they adjust to me being gone a little more (thankfully this should taper off a bit after we get over this first hump of appointments)
3. For our bonding and attachment as a family as we try to balance it all
4. For grace for ourselves, as well for all of our kiddos, as we travel this journey together
5. That we can get Ramya on long-term care

 I'm sure I have lots more, but I'm getting tired and can't think of them all right now!  I want to update everyone on how our attachment is going too, but that will just have to wait for another night :).