After the shunt was turned down on Wednesday, Nicholas was immediately fussy. He wasn't tolerating his feeds very well. He just wasn't acting like himself. We put a call in to his nurse and she said this was typical behavior for someone who just had the pressure in his head changed. It's a big change and it makes them feel yucky for awhile. Basically, he could be agitated and he probably wasn't tolerating the feeds as well because his belly was full of the cerebral spinal fluid the shunt was rapidly draining from his brain. If it continued past the weekend, let them know.
We had previously noticed a slightly hard spot on Nicholas's belly right between the two incision spots (one from the shunt placement and the other from the g-tube placement and nissen). We had mentioned it to his pediatrician the previous Friday, and they agreed it was slightly abnormal but that they weren't concerned and we would keep an eye on it.
Friday, Nicholas had his speech and occupational therapies. We had noticed the spot on his belly had grown and was now protruding. Mike felt Nicholas's belly after therapy and discovered it was rock hard. Nicholas had been inconsolable all night Thursday night and most of Friday morning. Since the neurosurgeon was in the same office building as the therapy, Mike decided to head up to the fifth floor and see if they could take a brief look at him. Both Nicholas's neurosurgeon and his partner were in surgery, but the medical assistant came out and looked at Nicholas. She became very concerned about his belly and asked Mike to take Nicholas across the street to the emergency department immediately.
Mike got into the ER very quickly (our hospital has a separate children's ER) and I left work to come over as well. A CT scan, shunt series, and abdominal ultrasound was ordered. As soon as I got to the room, Mike and Nicholas left for radiology. I stayed in the room with Zach and Emily. The CT and shunt series came back normal and showed the shunt is continuing to work very well. The abdominal ultrasound showed what appeared to be a cyst in his belly and the decision was made to admit him to the hospital to see if the cyst could be drained. They also ordered a CT scan of his belly to get a better picture of what was going on.
Mike ended up staying Friday night with Nicholas while Emily, Zach, and I went home. Not much happened overnight except that he did not tolerate his feed at all. Mike only got 60 ml (half of his normal feed) in while he screamed. After midnight, he was not allowed to eat anything in preparation for the cyst to be drained in the morning.
This morning, we received a visit from the PA in the neurosurgeon's office. She felt confident that the shunt was not the root cause of the issue and wanted to consult in general surgery to see if they felt the catheter of the shunt that lays in Nicholas's belly needed repositioning or if they felt the problem was something else. After awhile, the surgery resident came in and told us that after further review of the belly CT, they felt it was a pocket of CSF that had gotten stuck and appeared to be subcutaneous and therefore shouldn't be causing pain or the intolerance of feeds. He stated that his gut indicated that it was something else and he wanted to get the surgeon to review the tests and they would be back, hopefully with a plan. We were prepared that he may be scheduled for an exploratory laparascopy.
The surgeon came in and examined Nicholas. He agreed that the spot on his belly was likely not the cause of the pain and feed intolerance and ordered an upper GI scan to make sure that there wasn't a blockage somewhere in his digestive system. Nicholas was whisked away to radiology again. He was given barium with contrast through his g-tube and pictures were taken. Then they waited a half hour to complete some more pictures - they were trying to see how well the contrast moved through his digestive system. The answer came back that he has no obstructions in his digestive system. But...we still don't know what is causing the issue.
When he came back, his nurse came in to complete vitals and asked us if we had ever noticed his pupils were different sizes. We had not, and were pretty sure if they were, some medical professional would have noticed by now, as many as he had seen. The floor attending was called in to look and confirmed that one pupil was significantly larger than the other. The neurosurgeon's office was paged again and he was placed on full monitors. They weren't overly concerned, because he had no other symptoms that indicated potential neurological problems, but they wanted to watch him on full monitors just in case.
We asked about getting him fed, because at this point it had been 18 hours since he last ate. The nurse asked the floor attending who said we had to talk to the neurosurgeon who said that we had to talk to the general surgeon. The general surgeon approved him for feeds but suggested that we slow his feeds down from 4 ounces every four hours to a very slow continuous feed over 24 hours. We said okay, sounds good to us and the nurse laughed. She said that order has to come from his pediatrician so we have to page them. Finally, he was started on a continuous feed of 30 ml/hour for 24 hours.
That's where we stand right now. We don't know what's wrong with him, though there have been plenty of ideas tossed around, from a kink in the shunt catheter to the idea that perhaps the shunt catheter has grown into the scar tissue from the surgeries he's had. The honest answer is that he will likely require surgery again for them to get in there and figure out what's wrong. And that sucks. That sucks so bad for our little guy. It sucks that he's had to endure so much in the short 4 months he's been here. The good news is he's little enough that though the memories of this will be forever burned into our minds, he won't ever remember this. Hopefully we'll have figured out the big issues by the time he is old enough to remember and hospital stays and surgeries and radiology will be something he knows very little about.
I'll update when we know more.
Praying they can figure out what's wrong!
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