Shunt Revision UPDATED

Sick little man, in the hospital bed with Daddy:( (can you tell this is my favorite outfit on him?:)

Well folks... we are THAT 50%... we were hoping that we would be the 50% that would avoid shunt complications in the first year, but alas...

I noticed something was strange on Tuesday Aug 4th.  Dad was in town helping us get the houses in top shape, painting and fixing odds and ends.  Jonathan was just being sooo good, TOO good.  He was sleeping all day long, and my child is a daytime "power napper".  I also noticed he seemed to "choke" on a burp and I thought I saw his lips turn bluish for a moment.  Later that evening, Caleb was holding him and he was just SO fussy, so he laid him down.  Jonathan just zoned... like asleep but with his eyes open, it was very strange.  I picked him up, and he vomited.  I didn't think too much of it, but then he did it again... I felt his head and it was firmer than his normal (fussy, sleepy, firm head) Caleb and I both thought, "oh no"  So off to the ER we went, and he vomited AGAIN on the way.  By the time we got to the hospital he was responsive but limp, pretty out of it and grayish.  He continued to vomit until it was just dry heaves.... ohhh my poor baby!!  Long story short, we were life flighted to Denver where we spent 4 days.  He would be himself for awhile and then he would have spells of vomiting and lethargy , never a fever, we tested him for UTI and bacteria... nothing.  He had a CT and a Shunt series MRI, everything looked normal.  His white blood was elevated in the 20's, but they couldn't find anything.  So, they discharged us at noon on Saturday.  Jonathan looked good, acted happy and hadn't vomited since 5pm Fri.  We got on the road, Jonathan slept in his car seat for 2hrs.  He started getting fussy, I figured it was time to eat.  We all took a potty/lunch break in Cheyenne Wy.  Then, like dejavu... he started getting fussy, sleepy, pale, limp and then vomited 4 times in about 10min.  We found the ER, they admitted him and sent us back to Denver by ambulance.  I called Mom and she flew to Denver.  So last night they kept us for observation, telling me he was having a drop in blood pressure when he vomited and basically passing out, and that the vomiting was probably a bug and BLAH, BLAH, BLAH!!!!  I was feeling super stupid by this point, thinking "I must be over reacting".  Neuro came and explained to me AGAIN how, everything looked good, and it wasn't the shunt... but just to be sure it wasn't an infection they would tap the shunt and send the fluid to lab.  So, they did the tap and there was no fluid.  So he tapped another point and still nothing, he said, "that's interesting."  I said, "What's interesting?"  Then he explained that there should be fluid and it should come easily and that the shunt probably had a blockage.  Well DUH!!  I told you something wasn't right with my son, Caleb and I both just knew.  

8pm is surgery time, in just about an hour Jonathan will have his 4th surgery.  Please pray for my little man.  

God is good, all the time.  He knows what we need and when we need it.  

UPDATE:

Well, Jonathan did indeed have a blockage.  Apparently the chorid plexus cells were clogging the proximal catheter.  These are the little wavy hair like "thingys" that actually produce the CSF (cerebral spinal fluid).  The surgery took less than an hour.  The Dr replaced the little tube that goes into the top of his head to the ventricals, checked the flow to the rest of the shunt and got everything working again.  I am so thankful for Dr. McNatt, he even told me, "Sometimes it's hard for the Dr's to diagnosis the problem, usually the parents are a good source of information and we really should trust their intuition."  THANK YOU!