Happy Easter?

This weekend was hectic and frustrating, to say the least. It was a roller coaster of emotion as we thought we would get an answer and then someone else would be consulted in. It seemed that both the neurosurgery and general surgery staff members were certain the other was responsible for fixing whatever was wrong, and nobody wanted to make an official decision. Late Saturday night, Nicholas was moved to a different, much larger room on the same floor. We no longer feel like sardines, and Mike had an actual couch/bed to sleep on rather than a recliner. Still not comfortable, but slightly more.

Easter Sunday, I took Emily and Zachary to a friend's house for her annual Easter egg hunt and brunch. It was a nice break and Zach got to play with his friends and not be in a hospital for a few hours. While we were enjoying our egg hunt and brunch, the Orange County Sheriff's office came around the unit and brought the Easter bunny in to meet Nicholas. He got a stuffed bunny and they also left a coloring book and some crayons for Zach.

When we got back to the hospital, the speech therapist we had initially worked with when Nicholas was in the NICU was in the room working with him. Mike had spoken to the nurses and asked if we could get speech and occupational therapy involved in his care since he would be missing the appointments while in the hospital and it happened very quickly. The speech therapist was impressed with his improvement since leaving the hospital.

We didn't see anyone from the neurosurgeon or the general surgeon's office on Sunday and everything seemed to be at a standstill. The occupational therapist came in and also expressed happiness with the level of improvement Nicholas had since leaving the NICU. She said with the exception of his not being able to hold his head up consistently, he was advanced for his age.

Around 6 p.m. Nicholas started screaming and became inconsolable. His heart rate increased to the point of tachycardia - at one point, his heart rate was above 200. His nurse rushed in and gave him some more Tylenol. After about an hour he finally calmed down, though he continued to whimper until he fell asleep. His pain is clearly still not manageable and we told the night nurse when she came in that we needed to make sure the Tylenol stayed on board. Mike came home to sleep Sunday night since I was going back to work this morning and he needed to have the other two kids. We felt guilty leaving him there at the hospital, but his night nurse assured us she would check on him every two minutes if she needed to.

Yesterday, Nicholas's pediatrician came in to check on him and was very angry with the way that things had been handled over the weekend. He assured us that we would have at minimum a care plan today and was going to try and find us answers about why Nicholas was in so much pain and not tolerating his feeds. He was angry that the solution to his pain was not to figure out what was going on but to change the feeds to continuous. He felt that was treating the symptoms and not the problem. He consulted with the PA who works directly with the neurosurgeon who put Nicholas's shunt in and also the general surgery department. It was decided neurosurgery would take the lead since the issues started when the shunt was turned down.

The PA came in and they turned the shunt back up slightly to see if this would slow down the drain into his belly and relieve some of the pain. The pediatrician also ordered his feed to be turned back up slightly. Mike took Zach for some lunch and when he came back Nicholas was crying again. Mike asked the nurse what happened and she said "they turned his feed back up". The PA came back in and felt that the protrusion from the belly was larger again. 

When I got to the hospital after work, mike left to go to work and Nicholas was asleep. He woke up and started screaming again. It was time for his next Tylenol dose on the dot. The day nurse left and the night nurse came on. Nicholas's nurse from his pediatrician'so office texted Mike and told him that the neurosurgeon would be by in the morning to examine Nicholas and go forward in some direction. 

Around 7:30, I was packing up to leave and Nicholas became hysterical. I found his nurse and we were both worried because it had only been two hours since his last round of Tylenol. He couldn't have more but he was obviously in pain. She called the doctor and got permission for a one time small dose of ibuprofen. She also felt like he was straining when she picked him up so she called for a suppository. That must have been the issue. Once the suppository worked he calmed down immediately and fell asleep. I packed up the other two and we headed home. 

We, along with the pediatrician, will be demanding answers today from the neurosurgeon. And action.