Our Crazy Life

Soooo...as of this moment, surgery is scheduled for October 23rd at 8:30 a.m.  We met with neurosurgery last week, and Toby does need the detethering done before they put the rods in.  We looked at the MRI results, and he has a huge syrinx (fluid filled cyst) in his spinal cord, which could be as a result of too much fluid in the ventricles of his brain (i.e. still needs a working shunt) or the need to be detethered. After much discussion, we have decided to also do a shunt revision with the de-tethering.  We will never know whether the issues Toby has had are related to the ETV not draining enough cerebrospinal fluid from his ventricles, so this is our opportunity.  Essentially he will have two surgeries in one - #13 and #14 - but same anesthesia time.  

I'm nervous to say the least.  I realized later that twice after Toby's had surgery on his spinal system his sodium has dropped and we've had issues.  I really don't want to experience another 4+ hour convulsive seizure - I called the NS nurse on Friday and expressed my concerns.  She assured me that they will monitor his fluids really closely, and I'll probably push for getting his sodium checked after he's released from the hospital just to be sure.  I feel like if something happened, it will be on my shoulders, because I was the one that asked the doctor if we could do the shunt too.  He just hasn't been the same kid - after thinking through it, he ultimately made the decision to go ahead, but it still makes me nervous. 

After all of that, I have been considering what will happen to this scheduled surgery next week if the orthopedic surgeon decides not to do his back surgery by the end of this year.  If you remember he's been on vacation, and has no clue what has transpired these past few weeks.  It doesn't make sense to de-tether the spinal cord if we delay the rod surgery because scar tissue will form and he'll just need the detethering done again. 

SO, after all this planning, etc. everything could change.  I'm hoping/praying that it doesn't.  I have grieved through these surgeries, and now am ready to have them done, complete, and for Toby to be able to heal and move on - so pray that everything continues to fall into place.  We are moving forward as if surgery is October 23rd.  We'll see!

So, we have a lot going on right now.  Toby had an appt. with the his regular surgeon today - to get a new feeding tube.  It's called a Mini-one Balloon Button.  It's smaller, flatter, and skinnier than his other Mic-Key button, and hopefully will be better for him.  After the appointment we went to the lab to get blood drawn for all the pre-op stuff.  It was tough - they couldn't get the vein on the first try, and Toby was a crying hot mess!  He had an autonomic response - ears turned red, face, sweating profusely.  Thankfully, they got it on the second try, but afterwards he was exhausted and fell asleep in the van on the way home.  I think this is because his blood pressure drops when his autonomic system is under stress, and then he just fell asleep.  He is better tonight.

This week Toby also has a pulmonary appt., a complex care appt., and we are trying to stay healthy through all of this.  I also have to take Caris for an orthopedic appointment.  I think she might have a leg length discrepancy, and so we are just getting it checked to make sure her hips/legs are okay.  

Sunday, is the Nationwide Children's Hospital Marathon/Half-Marathon.  We are making all the plans for Toby to cheer the runners on, and my sister Shauna and myself are running the half-marathon (it will be her first and my second).  I'm excited for most of my family to come in for a visit, but we have a big week, a bigger weekend, and an even bigger week next week.  Did I mention that Toby's IEP meeting is Monday?

Whew - we surely covet your prayers through all of this - and for mommy to stay healthy and sane! :)