Not the News We Were Hoping For

Yesterday Matt and I tried to get ready as quickly as possible so that we could see how our little guy was doing. It wasn’t long after we got to the hospital that the neurosurgeon came to do his rounds.  As soon as he took the gauze off of his back, we saw clear fluid leaking.  I could tell that the doctor didn't want to say it, but Joshua needed a shunt.  The doctor put another stitch in his back to tie up the area where the ceribral spinal fluid or CSF was leaking from and scheduled him for a shunt that day.  In preparation, they wanted a head CT scan to take a look at his ventricles.  The CT scan showed no obvious hydrocephalus had accumulated but it was obvious that he needed a shunt because the CSF was just finding another outlet.  Joshua went down to the operating room (OR) at 1pm.  The staff is great at making sure parents get consistent updates during the surgery.  They actually give you a buzzer like you get in a restaurant.  When it buzzes, you take it to the front desk and the OR calls you.  Not long after they took Joshua back, the neurosurgeon came out and told us that when he started taking out the stitches from Joshua's incision, there was CSF leaking in several places that weren't visible that morning.  If it was just leaking from the pinhole sized location that we initially found, they would have been able to do the shunt.  Since it was in several places, they wanted to put a catheter in his head ventricles (areas that store CSF in the brain) to allow the pressure that had been building to release and drain.  The doctor was concerned that Joshua could have an infection or meningitis from his insision.  The fluid that leaked out was pretty clear but he wasn't certain that there wasn't an infection.  Rather than simply closing the incision and putting in a shunt, they want the incision to completely heal on his back, give him antibiotics, and make sure that he doesn't have an infection.  The entire procedure took about 3 hours. Once the incision on his back is healed (about a week or two) they will take the catheter out and most likely put in a shunt.  After the surgery, waited for him outside the Neonatal Intensive Care Unit (NICU) to return from post-operation recovery.  When they brought him back, they wheeled him in on a adult sized bed.  His tiny body looked so sweet and fragile on that huge bed!  The catheter was sticking out of his head.  It is secured in place by a few small stiches that prevent the line from pulling out.  The neurosurgeon has still given me the thumbs up to breastfeed but I'm so scared to hold him.  He practically has something on every part of his body.  Plus, his head needs to be lower than his spine so that any pressure is reduced.

This morning when we got to the hospital to see Josh, I talked to the neurosurgeon briefly.  There was still CSF leaking from his incision.   The neurosurgeon wants his spine to be a little higher than it was yesterday to continue to reduce the pressure.  I fed him a bottle, but he continued to cry while I was feeding him.  He normally eats peacefully and maybe even falls asleep with the bottle.  Sometimes, he just looks at me in contentment.  I could tell that he was in pain.  As tears filled my eyes, I took a deep breath and told the nurse that I thought he might be in pain.  She checked his chart and it turns out that he needed a new dose of medicine.  He's such a brave little boy.  He's been through more in his 13 days of life than most go through in a lifetime.  We named him after Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."  He continues to show us his courage and strength through all of this. 

We certainly didn't want him to get a shunt, but Matt and I walked into this knowing that if he needs it, he needs it.  He needed this procedure.  The risk of meningitis or some other infection is too likely without it.  Again and again God is teaching us to trust Him.  We were hoping to bust out of this place a bit sooner than a month but it's looking like that may not be possible.  

On a positive note, the sleep study showed no significant problems.  His saturation level (amount of oxygen in his blood) dipped a little low at times but the pulmonologist wasn't concerned.  He wants to do a follow-up at some point but it's nothing to be worried about.

I forgot to mention before that when the neurologist saw Joshua's MRI she ruled out any problems with his brain.  Initially they thought he had something called migrational disorder.  However, she said that what she saw was typical of kids with mylomeningocele (the type of spina bifida Joshua has).  Her exact words were "This kid can do anything!"  We have high hopes of a bright future for our little guy!

-Kim and Matt