Another surgery done

It wasn’t long after we were informed about the possibility of surgery that it was actually scheduled (Friday).  Again, unfortunately the internet is very patchy so we’ve not been able to update.  Our neurosurgeon handed us off to a colleague of his who specializes in spina bifida.  Joshua’s new neurosurgeon has performed this type of re-closure many times and was happy to take Josh on his caseload.  Therefore on Friday Joshua went in for surgery for the second time on his back.  They had the plastic surgeon on standby but weren’t sure if they were going to need him.  The skin where the CSF was leaking is very thin.  The doctors compare it to tissue paper.  To help prevent the CSF from leaking they reopened the entire incision and pulled tissue and fascia from the sacrum and the lower back.  The new tissue covered the area where the CSF was leaking.  I asked the doctor if he thought that this “was it.”  He responded by telling me that this was going to get fixed before we leave here and that we didn’t need to worry about whether or not it was going to get taken care of.  It could take just this surgery or it could be multiple surgeries.  Regardless, it’s going to get taken care of.  I don’t think I ever questioned whether or not it would still be leaking when we left.  However it keeps as a reminder to me that as long as we leave here healthy and healed, that is what’s important. 

Today they pulled the dressing off of his incision.  The incision is much prettier than the one before, if that’s possible.  The other incision was raised and made him look like a football.  This incision is flat.  The neurosurgeon looks at it everyday to monitor progress and is extremely happy with how it looks. 

They are continually monitoring how much CSF is leaking from his head catheters.  On Thursday, the nurse flushed out his right catheter.  When she did that, the fluid that she flushed drained out the left catheter.  Now remember, originally they only put one catheter in because the left and right ventricles are connected and the fluid should freely move between both.  Therefore usually there is no need for two catheters.  It’s awesome that his brain is now communicating!  There was a little CSF leaking from one of the catheters this morning so the nurse paged neurosurgery to come and take a look at them.  The neurosurgeon didn’t get there until after we left (NICU closes between 2pm - 4pm).  When we returned, they had taken the right catheter out! Yay!  He still has one catheter, but the fact that he doesn’t need both anymore is a huge victory!  Next the neurosurgeon wants to begin challenging the left catheter by shutting off the valve to see if Joshua truly needs a shunt or not.  If his ventricles begin to swell or fluid shows up in other places, we will know that Josh needs the shunt.  We are still praying for a miracle!

We sit by his bedside almost all day.  Most of the time, we’re talking about what we’ll do as a family and what it will be like when we finally get to take him home.  We’re excited about normal.  Midnight feedings and dirty diapers used to feel scary.  I would trade this for that any day.  Despite the difficult circumstances and hardships, words can’t convey how grateful we are that he’s here with us.