If you don't believe....you gotta read this!!!

First of all...let me just say.....GOD IS GREAT!

Ok, here we go. Today, Wednesday, started off like we have all the other days prior at Dell Children's Hospital.  Vital signs, Cathing Mel, tired, definately not enough sleep for both of us, IV antibiotics, doctors rounding, etc......Mel actually slept in, kinda, until about 11 am.  We went and got lunch downstairs, we even made it back to quickly attend a little Halloween Party they were having for the kids....she got a new costume and goodie bag!  Today was the Urodynamic Study with the urologist...scheduled for 1:00 pm.  They come and get her at 1:15pm.  We were all expecting to see how bad her bladder really was.  After getting her all hooked up....urologist shows up, he wanted to see the test in person (love him).  Let me explain how this test works a little:  they put a catheter in her bladder and leave it there.  Then she is hooked up with EMG electrodes.  Contrast dye was injected at a rate into her bladder.  They take live pictures of her bladder and kidneys during the test itself every so many milliliters.  As her bladder fills with the contrast dye, it is measuring the pressure in her bladder and it also uses EMG to see what her muscles are doing, basically seeing if the brain is signaling the bladder like it should...even though there is a break in the transmission process due to her spinal injury.  Anyways....her bladder last week was only able to hold 40 ml, a "normal" 9 year old bladder should be able to hold about 300 ml.  Her bladder showed to be very small and didn't give like it should, which caused a Grade IV Reflux in her kidney.  Well, we watched and waited.........and waited.....and waited.....and watched.  As they continued to fill her bladder to 100 ml, then 150 ml, then 200 ml.....NO REFLUX is showing up!  I asked...."what does that mean?".  He said I'm not really sure...."there is no reflux and her bladder is able to hold 240 ml of fluid".  He wants to do the test again....we start it all over...all the while Mel is watching Marley and Me on the DVD.  We do it again...wait and watch, etc.  The bladder again is able to fill to over 275 ml and still NO REFLUX into the kidneys.  He says that is not possible.  He then calls for a renal sonogram right then.  He looks at the kidneys that were both filled to dangerous levels of extra fluid, "hydronephrosis".....and it's all gone, except for a very small amount.  No reflux, hydronephrosis gone....nothing!  He can't explain it medically!  I again ask him...."what does that mean?"...he says that means she may not be having surgery tomorrow!  WHAT?  No surgery???  He wants to talk to his partner and the neurosurgeon about these new findings, but he really feels no reason to have the spinal surgery....her body is basically fixed the hydronephrosis and reflux on it's own.  She still has high pressures in her bladder, no biggie to fix probably. 
Soooooooo....we go back to our room and wait patiently for the neurosurgeon to come by and give me the official word on surgery.  He does!  Nope, no one sees a reason for why this happened and no reason to have a big procedure like this at all!  Can you believe it????!!!!  He actually says the words to me...."let's see what we can do to get yall out of here!"  What?????????  OMG, really?

So we have gone from needing a big spinal surgery, losing all hope for future mobility, losing a kidney, down recovering for another month and another 7 more days in the hospital to.......WE ARE GOING HOME! 

Whatever higher power you believe in.....it is alive an well in Melanie!  She is again proving that God has a special plan for her!  He isn't done with her!  We are spending the night at Dell tonight, not sure if tomorrow is really the day of departure...but we definately will keep you posted.  Thank you for all of your prayers!  The Power of Prayer, so God Story, is sleeping well right in front of me....can't wait to get her home!  Love to all!  God Bless!

Hospital Update.....day 13!

***late post, only went to draft and not to blog, sorry!***

Yep....still here.  Today marks day 13!  Whoohooo!  In the last 37 days we have spent about 25 days of them in the hospital!  Anyways....here's the latest!

We are on "coast mode" for right now.  No fever in several days, all lab work is within normal range, coloring is better, feeling better too!  We are still on two IV antibiotics.  The specialists have found that Mel's spinal cord has retethered in a small section.  That is probably what is causing her bladder not to work right than in turn is messing up her kidneys....the spine bone is connected to the bladder bone, the bladder bone is connected to the kidney bone...lol.  Anyways...they have decided to go in to her spine for another tethered cord release this Thursday, day after tomorrow.  That will mean that she will be in ICU or IMC for one day or so after surgery, then flat on her back for about 4 days and hopefully home about 7 days after surgery!  So we could be home by the next weekend!  whoohoo! 

Some things that we are facing right now....the doctors are assuming that her bladder is very high in pressure that caused the problems with her kidneys.  Because the problems are so significant....there is talk of an augmentation of her bladder to Botox injections to her bladder!  We aren't sure the route we are going to go...just trying to save her one good kidney!  Here is the most pressing decision we have to make.....there is an option that the neurosurgeon is considering.  He wants us to think about disconnecting a part of her spinal cord at a level that she already has no feeling at.  This may decrease her chances of becoming re-tethered in the future, thus causing problems with the bladder and the one good kidney that's left.  However.....he is very hesitant to go this route because we he did this surgery on her 3 years ago, he stimulated her nerves below her spinal cord injury and was able to make her legs move.  This would mean that she would be a great canidate for medical technology to increase her mobility in the future!  If we decided to disconnect the spinal cord, the opportunity for medical technology to increase mobility would be not be there.  Basically, we needed to decide are the risks and benefits of disconnecting the spinal cord worth the possibilty of saving the kidney....increased mobility or kidney transplant list some day!  Wow.....Mike and I decided to talk to the urologist further on how bad her kidney really is.  She is ONLY 9 years old.  What a huge decision. 

Ok...so the doctors decided to do a Urodynamic Study on Wednesday.  This would give them a baseline to how bad her bladder was prior to the tethered cord release surgery.  Since outcomes of the surgery could take up to 6-12 weeks, they would repeat the study then and compare it to the one just prior to see if it really helped any.  Stay tuned!

Special Thanks....again!

For the last several days many of my our friends have been taking care of us!  From bringing meals to Mel and I in the hospital to feeding my family still at home every night this week!  The family at home thinks it's Christmas...they can't wait to see what's in the ice chest on the porch at night!  Thanks so much for helping us out in this very difficult time!  It is a relief, as a mother, to know that the family I can't take care of at home is being taken care of by people who care!  This situation has put a whole new meaning in the phrase, "It takes a village".

Want to say thanks to our family's Angels....you know who you are!

Hugs and love to all!  Thank you from the bottom of our hearts!

The Peters' Family

Hospital Update....day 11!

Ok.....as the end of day 11 at Dell Children's Hospital an update is in order!  We are STILL here!  We had a small surgery last night to look in her right and left kidneys.  Pretty much  unremarkable.  Which is good, I guess.  However, today we were visited by Dr. George (neurosurgeon) he has taken into account Mel's medical condition right now with her kidneys and looked at the MRIs of her spine.  He has decided that there is a small section of her spine that is tethered and needs to be released.  This could very well be the reason why the huge changes in her bladder that has caused the massive problems with her kidneys.  Let me explain a little more....Mel has a neurogenic bladder....which means that the nerves that go to the bladder and make it work properly were destroyed due to the spina bifida.....since her spinal cord isn't working properly again because of tethering (which can be common in spinal cord injuries) it is causing her bladder that already doesn't work right to function less right.....then causing her kidneys to suffer since they are all connected.  Sooooo, what that means is that we are headed for another surgery very soon!  Dr. George wants to do it "sooner than later".  When asked if it will be on this admission, he wasn't sure...he was going to need a blessing from the infectious disease doctor first....go figure, he doesn't want to open up her spine when she still has an infection!

On the infection front.....Dr. Fernandez came in shaking her head.  She is not too comfortable with what is going on with Mel right now.  She is not confident enough to know that she is getting better the way she wants her too.  We are currently still on 2 IV antibiotics.  Today, Dr. Fernandez ordered some more blood work.  Mel's blood test from day before yesterday showed inflammation in her body again, that had come down some what since she was first admitted.  This is being looked at that there might be more going on....boooooooo!  We repeated that test today and will have it repeated again tomorrow.  For now, it looks like our ideas of possibly going home this weekend is a far stretch!  Oh well...it is what it is!  On a good note, Mel is finally seeming to have longer and better days for the last 48 hours.  An uneventful night was our first night!  She felt good today too.  Her coloring is still pale, still dark circles under her eyes....but better overall. We will see what tomorrow brings!   HOOOOHUMMMMMM

One more thing....OU Still Sucks!  Just sayin'!  Hook'em!  \m/

Hospital Update....day 10! Part II

Hello...it's us again!  More to update you on!
Most of the doctors rounded today...Glad I politely suggested Mel not go home today...her CRP is up again which is showing that there is inflammation going on again.  Upper spine MRI done, no results yet.  Renal Ultrasound done, not much changed good or bad since the last one earlier in the week.  Scheduled for her next surgery to work on the kidneys is at 5:00 pm today!  I will update later tonight when we hear how that went!  Thanks again for the concerns, well wishes and prayers....keep them coming!

Hospital Update....day 10!

Well.....Mel is still doing her thing!  They have now done an MRI of her lower spine to see if her spinal cord is re-tethered again and that is what is causing the problems that is making her bladder and kidney act up.   At last report from Dr. George, he doesn't see that the spine is the problem.  The Infectious Disease doctor isn't pleased with Mel's progress.  She would expect to see Mel feeling LOTS better, better than she is right now, after 7 days of two IV antibiotics.  She has now asked the Urologist to go look into the "bad" right kidney to see if there is some infection just hanging out in there.  Soooooo, we are headed once again for another procedure this afternoon.  We also had an Echocardiogram done yesterday to see if her high blood pressures have caused any damage to her heart....no word yet from the Cardiologist.  Last night was another interesting one.  I was awaken last night to the awesome sound from the pulse ox machine telling us that her heart rate was in the 40s.  Come to find out, her blood pressure dropped to 80s/40s and heart rate was staying in the 40s.  AWESOME!  One more wrench Mel thought to throw in the mix!  Soooooo.....going home today is OUT.  Now we are working on going home later this weekend!  UUUGGGHHHHH!

Wait....they just came in and added another test!  They are going to do an MRI of her upper spine to see if her spine is tethered up higher!  That one will take an hour to do....wow, what this girl has to go through!  I think we must have set some record for the number of times one patient goes down to radiology in one hospital stay.  More to come once we know more!

We have a star in the house!

Mel just spent time with FOX 7 news anchor, Loriana Hernandez.  They filmed Melanie for a PSA for the Children's Miracle Network that will air sometime first of the year.  I will keep you updated!  Cool, huh?