...the rest of the story

From where I left off:

After the CT scan and the x-rays, a couple of things were determined. It did appear that his ventricals were a bit dialated and it also appeared that the tube for his shunt that runs down from his head to his tummy was broken. They weren't 100% convinced that his shunt was failing so they decided to do a little procedure to determine for sure if that was the problem. When they initially did the tap, his pressure measured 18 mmHg. After they did some draining and lowered his pressure to about 10, he started perking up. It was good to see him coming around. They drained his pressure down to about 3 and he was definitely feeling better. He was given permission to eat until midnight and it looked as though he'd be able to hold down the first food in more than 24 hours.

I called one of the awesome ladies we go to church with and asked if she could come to the hospital to hang with him while I ran home to get a change of clothes and pick up some dinner for the boy. She came with a friend and hung out with him. I completely appreciated her willingness and availability to relieve me for a little bit.

I got back to the hospital and he chowed down on the food I brought him. He ate until he was FULL. The ladies left and the anesthesiologist came to do his intake for the surgery. He'd just finished asking all of his questions and got ready to start his exam. It'd been about 2 1/2 hours since the shunt was tapped and just as he got ready to check my boy's vitals, Dude got a look on his face that sent me grabbing for the bucket. Lo and behold, he lost every bit of his dinner and started to feel the head pain again.

Within another hour, he was in a room in the PICU and hooked up to some serious monitors. Very quickly, it became quite clear that the shunt malfunction was very detrimental to his basic functions. His pulse was in the low 40's and his blood pressure had dropped into the very low range (70/35). She called for a neurosurgeon to come and check on him as well as to review the admission orders since no pain meds were noted on his orders.

Two residents arrived in short order and once again began to tap his shunt. They drew off about 5cc's of CSF. At that point, the resident began to struggle with the draw. He started manuevering around inside the shunt valve trying to get more fluid off, to no avail. At that point, my little guy said in perfect form, "uh...ya know...my head would probably feel better if you'd quit digging in my brain..." It was the Classic Middle Mann sort of comment and the residents stopped trying. His vitals recovered nicely with even the minimal release of extra fluid.

It was recommended that I get some sleep while I could. It was about 2:30 in the morning.

Around 5:00 am, his alarms started going off. His breathing had begun to slow to the point where he wasn't taking a breath once every 25 seconds. The monitor is hard coded to sound at that point. I think the sound of the alarm is intended to either wake the patient or the parent. Once I was woken, I sat up quickly and touched him - recommending he take a breath. He did and we slept this way for about 30 minutes with a reminder to breathe every couple of minutes or so. The nurse came in with some pain meds for him to try and take off the edge since he was really starting to get uncomfortable with the headaches again by this time.

Neurosurgery came through for rounds around 6:00 and examined him. His vitals were scary low and the shunt tapping was only relieving his symptoms for about 3 hours. He was scheduled for surgery at 1:00 pm which would have meant 2 additional taps before surgery. After their exam, the team met to discuss the plan. It was decided that because of his condition, it was in the best interest of everyone that the entire surgery schedule be shuffled and he was taken to surgery first at 7:00 am instead of last at 1:00 pm.

He made it through surgery with flying colors. It ended up that they only needed to replace the tube from the valve to his tummy, where the break had been seen on x-ray. This was the best possible outcome with the least risk for additional complications.

Because there hadn't been any invasion of his brain during surgery, the only requirement for his discharge was that he needed to pee. This turned out to be quite a struggle for the sweet, post surgical boy. He tried and tried and tried some more. Around 10:00 pm, the nursing staff finally agreed that he'd tried enough and they "went in" to relieve him. Just as the catheter passed through the place where success is no longer an option, he announced, "Whoa! It's gonna work!" We stayed that night, and apparently, while I was sleeping, the nurse came in the middle of the night and accompanied him to the toilet for his first successful pee since before surgery.

Upon waking, breakfast was served and discharge commenced. Wahoo!! We got to go home!!!!

My mom had arrived on Tuesday evening and greeted us nearly rested when we got to the house. She's definitely been a huge help and I'm so glad she was able to come and help me during this time.