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!