This wasn't a small victory, it was huge!

Stress is what started this day.  We were already stressed thinking about the upcoming ultrasound.  The nurses had stopped feeding Josh at 4am in case he had to go to the operating room for a shunt.  When we walked into the NICU, we could hear him crying from the door.  He was miserable.  To further complicate his misery, the central line, which is what they implanted in his chest to substitute for an IV line, came loose during the course of the night.  They noticed that his entire blanket was wet after his IV fluids (for the possible surgery) were started.  His chest looked swollen and sore.  The surgeon from the operating room had to come up to pull the line.  However, he needed to have an x-ray to make sure it was really out of place.  After the x-ray, the surgeon pulled the line.  Then finally the ultrasound technician came up to do the ultrasound.  The little guy hadn’t eaten for seven hours, was given a bedside x-ray, and had a tube pulled out of his chest.  Keeping him still for the ultrasound seemed like it would be harder than it actually was.  After the ultrasound tech finally left, it was a waiting game.

About an hour later, Matt and I were changing Joshua’s diaper when I looked up and our nurse was on the phone.  She came over to us with a smile on her face and tears in her eyes. She heard from neurosurgery and they told her that the ultrasound showed that his ventricles were normal and that they were going to begin transitioning us to go home.  We were overjoyed and can’t believe we’ll be going home shortly.  On Sunday they will do a sleep study on Joshua since his last sleep study showed that had some apnea.  On Monday he will do another ultrasound to make sure everything is okay before letting us leave.  We will spend the night with him in a room at the hospital and probably end up leaving on Tuesday or Wednesday.  We’ll be going back to the doctor every Monday so that they can do an ultrasound to check his ventricles.  There are many reasons that we don’t want Joshua to have a shunt but here are the cold hard facts: 80 – 90% of kids with spina bifida get a shunt.  After getting a shunt, it usually will fail or become infected within the first 6 months.  On average, they need to be modified 2 to 3 times before a child is 18 years old.  Typically if a child needs a shunt, it will show in the first 7 days.  After that it’s most likely to occur within the first month.  If you make it out of the first month, the chances reduce drastically again.  If you make it out of the first year, the chances are much smaller yet. 

Today was a huge victory!  I can’t believe our time has finally come.  We felt like we were perpetually “2 weeks away” but finally the end is in sight.  It felt hopeless towards the middle of the process.  I think back to when the CSF was leaking out of his incision 11 days after the initial closure.  The doctor felt at that point that he needed to put the shunt in, but in the operating room the CSF was slightly cloudy so he wanted to send it to the lab to make sure it wasn’t infected. That’s when the neurosurgeon put the first catheter in his head.  A few days later, they figured out that the two ventricles weren’t communicating so they added an additional drain.  All of these things prevented the shunt from going in right away.  We know that God is and has been doing something spectacular.  We needed to persevere.  It’s not to say that Joshua won’t need a shunt, but we have high hopes.