Shunt the front door

After getting a rapid MRI last Friday, the team determined that Cameron needed his shunt reprogrammed. While his ventricles had contracted (good), there was some slight fluid build up around his brain (bad). The team decided to increase the shunt setting to slow the drainage of CSF. Cameron seemed fine on Saturday and most of Sunday. After playing with his brothers late Sunday afternoon in his hospital room, we saw that he was showing signs of fatigue. We were on the lookout for any significant changes due to the change in the shunt. After Cameron slept the whole day on Monday, we talked with the team about our concern and they decided to take another rapid MRI. The new MRI showed an increase of fluid in the ventricles and the team decided to move the shunt setting back to the original setting in hopes that it would help relieve the pressure build up. We were told that it would take a bit of time for him to feel better. Cameron then slept all day Tuesday and all day Wednesday.

On Wednesday, Cameron woke up for a minute to wave to Buster and Kristen Posey who came by the rooms to visit kids. That afternoon, we told the team that there still has not been a change and were very concerned that he was sleeping all day, and that his eye had deviated back to a similar position as when he was diagnosed. The team took another rapid MRI, which showed continued increase in the ventricles. They then took a look at the shunt again to make sure the programming was right at the setting they wanted. They even took x-rays to verify the correct setting. They were not sure if the shunt was at the appropriate setting when last adjusted or if the shunt had failed. Given the dramatic increase since Monday, they sent us to the ICU so they could monitor Cam with hourly neuro checks, because if things did not improve they would most likely need to perform surgery.

We spent Wednesday night with him in the ICU. He was NPO given the potential surgery in the morning. Good news was that he seemed to be feeling a bit better that evening. He asked to watch football (which was great for many reasons - especially since the NFL Network had a replay of the Eagles game). He had good night - except for someone's call for a midnight x-ray to re-check the shunt line to his stomach. The hourly neuro and vital checks were fine that night and all day Thursday. The Neurosurgical wanted us to stay in the ICU for another day, but we pushed back to get him back on the Onc floor. We were allowed to transfer out of the ICU and back to the Onc floor yesterday afternoon and Cam was able to get a better night's sleep with fewer interruptions. He was still on NPO, since he would potentially need surgery if the MRI Friday morning did not look good. This morning, Cameron had his 4th rapid MRI of the week to check on the ventricles. Thankfully, the MRI showed a decrease of the ventricles. He was looking and feeling much better for the rest of today.

Now we are just waiting for his ANC to climb to 200 and we’ll be able to be discharged. He was 20 today, but he usually has a nice hockey stick once his counts start to come back...fingers crossed for Saturday or Sunday.