He's a rockstar!

Tim:

"He's a rockstar!"  That's what our nurse said to me today, but she wasn't referring to the guitar player who came by our room and sang Michael a lullaby before naptime.  She was referring to Michael and his progress today. 

Liz went home to Fort Collins during the weekend so we've been concerned what Michael would eat while Liz is away.  He's been nursing and bottle feeding breast milk just fine the last few days, but there wasn't enough milk to last the whole weekend.  None of our kids has ever been willing to drink baby formula--not one!  So if Michael is anything like his older siblings, we were concerned Liz would either have to come back to the hospital a day early when the milk supply ran out, or we'd have to put the feeding tube back in.  This morning came the moment of truth.  We gave him a bottle of formula and...he guzzled the whole thing down like a pro!  I guess I shouldn't have been that surprised.  Every child has an innate desire to one-up their siblings. :-)

Michael has also earned the nickname of "Houdini" from the nurses.  A few days ago he yanked out his feeding tube, which we've so far convinced the nurses to keep it out.  Today he pulled out his PICC line, which is the special IV running from his arm to his heart where they've been administering his fluids, meds, and drawing his blood.  That one is much more serious.  The nurse couldn't believe it.  At first she seemed like she was trying really hard not to panic.  But as she thought about it, she thinks he's going to be okay without it.  Here's why.

One of the main uses for the PICC lately has been to replace the fluids that are lost by his EVD (the drain in his head).  A few days ago Dr. O'Neill (the neurosurgeon) told us that Michael for sure would need a permanent shunt running under his skin to drain fluid from his brain to his belly.  Michael had failed twice to drain the fluid on his own without the EVD, as evidenced by the cerebrospinal fluid leaks through his stitches.  We begged the surgeon to let Michael try one more time before ordering a shunt.  He said okay, but three strikes he's out.  The next day, Michael wasn't leaking any fluid, but it was clear there was fluid building up in the back of his neck.  The stitches had simply healed enough that it wasn't leaking any fluid.  Strike three.

The next day Dr. O'Neill said he still wasn't absolutely convinced Michael needed a shunt.  Perhaps that last strike was really a foul ball and Michael still had one more chance.  Liz overheard him arguing with the head neurosurgeon about it in the hallway.  The head neurosurgeon was asking Dr. O'Neill why he insisted on torturing Michael, that they had waited long enough, it was clear the pressure was building up in his brain and causing him pain, and that he clearly needed a shunt.  Dr. O'Neill reminded the head neurosurgeon that the fluid collecting at the back of Michael's neck could be blood gathering there from the surgery and might not be a sign that Michael wasn't draining properly.  He still wanted to give it one more try.

So Dr. O'Neill raised the EVD all the way up to 20cm, which is higher than Michael has ever had it and the highest level it will go.  At the first sign of leaking or hydrocephalus (too much pressure on the brain) he'd lower the EVD back down and go ahead with the shunt surgery.  That was yesterday.  As of today, there has been no leaking or signs of hydrocephalus, no need to replace fluids through his PICC line, and the nurse reported that Michael's ICP (intracranial pressure) looks completely normal.  So this morning Dr. O'Neill turned off the EVD completely.  If Michael continues to look good, he'll get a CT scan before Monday's surgery to make sure the ventricles in his brain aren't swelling with fluid.  If that's the case, Dr. O'Neill will cancel the shunt portion of the surgery!  (Michael will still have surgery on Monday to put in a medi-port for chemo.)

Dr. O'Neill reminded me that just because Michael hasn't failed yet there's still a chance he will need a shunt within the next few weeks since sometimes hydrocephalus takes a few weeks to manifest itself again.  But if he makes it a few more weeks, then it's likely he won't ever need the shunt.  A few days ago both Liz and I were totally resigned to Michael needing a shunt.  Now we're wondering if we dare get our hopes up that he won't need one after all.  We'll keep our hopes and prayers up and put it in the Lord's hands.