We came in for our follow up neurosurgery consult on Tue. We’ve noticed that his skull plates are more visible now and his soft spot was more pronounced. His doctor noticed as well and being concerned, ran a CT Scan that day. He determined the shunt was working TOO well and allowing too much to drain out of his head. He scheduled Cole for Surgery for Wed (the next day) to externalize the shunt and actually install two additional external drains (after seeing some bleeding in the scans). He sent us home that afternoon to come back the next day for surgery. We went home and things went well - or so we thought.
He had a great feed at 10PM and then began to get fussy which escalated to crying - something pretty unusual for Cole - he's such a mellow baby. He ended up crying and fussing for almost 2 hours. During that time we tried everything - more food, burping, pacifiers, swinging, standing, walking, ride in the car, swinging in car seat, laying on his stomach on our arm, stroking his forehead, singing to him - everything. At about the ~90 min mark, we decided he needed to go to the ER based on possible other possible complications. At the hospital they found all of his levels (white cell count, temperature, etc.) were elevated but within 2 hours his levels were down in the normal-high or low end of the high range - not so scary range. They admitted us to a room and began to run more cultures. Before surgery, they found an infection - which was good they found it before surgery so they could begin also begin antibiotics – but ultimately complicated some things, the least of which being a prolonged stay the greater being potentially more surgeries. He was in surgery a little longer than normal because his tiny veins which tend to create problems for anyone wanting to take blood or administer an IV. The doctors indicate that he did well with the surgery. They proceeded with their original plan by taking out his shunt and installing three drains.
They're treating his infection pretty aggressively. In the mean time, he developed a high fever and a few episodes of apnea (stopped breathing) - scary. His fever broke late on thursday and he began eating again - finally. They attempted to install a pic line (into his arm) yesterday to help with the administration of fluids, antibiotics, taking blood, etc. - in fact made several attempts - but those darn veins wouldn't allow it. So, we're exploring other options - potentially a central line. He's already had multiple IV spots fail. 
Amidst all of this one of the saddest things for me and Shawn in all of this is they had to cut off all of his beautiful long locks on the top of his head - but I guess now we'll get a chance to watch it all come in again. But of course the bigger issues involve these new drains and the infection which requires a tight isolation - especially during RSV season. We've had to restrict EVERYONE from coming up to see him for the immediate time - family, friends, Bishop, especially children - yuck for all of us. The doctors have said they won't even consider installing a new shunt until 10days AFTER the infection has past. And we don't want to risk the extending that time by having a reoccurrence with the infection. We'd like to get back to a 'normal' life (as normal as life can be with anew baby). As you can see with the pics, we had to put the feeding tube and oxygen back in - although we were so close to getting rid of both. But, he was having too many episodes where he was desating (Oxygen level dropping two low) and no one, including us, wanted to take a risk or have another episode of apnea - so back in it went. And, while we were excited to get rid of the feeding tube - it seems like a small price if he'll keep getting food. It may just mean more time working on getting him to remember to 'suck a bottle' again. Thank goodness, Shawn has been able to administer several priesthood blessings immediately and on numerous occasions over the last few days.
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