Somone recently told me that I would begin forgetting the details of Steven's journey as the years go on...so now I'm going to record every detail!
Steven had a "routine" surgery on February 22nd to remove a tumor/cyst from the right hemisphere of the cerebellum.
Background:
The tumor has been there since the early years. It did the usual plodding growth that all hemangioblastomas seem to do in Steven's brain...a millimeter here, a millimeter there.
In December 2016, during his routine MRI at the NIH, a small cyst was noted on the tumor. I'm not sure if the small cyst was noticed by me or by the renowned radiologist in Building 10, but it was noted none the less.
In December 2017, during his routine MRI at the NIH, it was noted that the tumor/cyst was pushing and half occluding the fourth ventricle. Surgery was recommended to prevent hydrocephalus. Steven was given a broad window of time, and he booked this surgery for the end of January, 2018.
January also happened to be a month for a 6 month followup with the amazing Dr V here in Tampa. Dr V has always kept Steven on a yearly schedule of MRIs and clinic appointments, but this appointment was scheduled for 6 months because Dr V noticed this cyst on the scan the previous July. Steven scanned early in the day and met with Dr V during the afternoon of the 16th. He presented the information from the drs at the NIH to Dr V, and Dr V concurred. Because of the partial occlusion of the 4th ventricle, this tumor needed to be removed.
Steven chose to do the surgery here in Tampa with Dr. V. The date set for the surgery was February 22nd.
Surgery:
The surgery was early in the morning of the 22nd. We met Steven in admissions at TGH, and we all trudged up to the 2nd surgery area. The nurse there told us to wait in the 3rd floor waiting room, as Steven needed a pre-op MRI, and that was where the MRI machines were. We were still sitting there at 6:45 am, unattended and seemingly unnoticed, and the surgery was scheduled for 7:30!! Steven was becoming very agitated, so I went back down to the 2nd floor surgery area. The nurse there promised that people knew that Steven was waiting on the third floor. Sure enough, by the time I got back up to the third floor, someone had come to get Steven.
We were all able to see him in the pre-op area. Poor Mary had to leave for a presentation in her political science class!! Steven was taken away around 8 for his surgery.
My parents, Dale and I returned to the third floor waiting room. It is more calm and serene and less crowded than the second floor. Around 1 or 1:30 Dr V came in to tell us that our sweet boy was being stitched up and doing fine. He had few words, other than that the surgery went as planned.
We were told that in about an hour or so we could see Steven in the recovery area. We all trudged back down to the second floor waiting room...and waited...and waited. While I'm not sure of the exact timeline here, I believe it was around 3 or so before we were able to go back and see Steven in recovery. He was, understandably, groggy and not very responsive to us. The nurse tending to him did mention that he had stopped breathing several times, but he was able to get Steven breathing again by rousing him. I am beginning to think that this is Steven's "go to" behavior after anesthesia. Because of the breathing issues, the nurse held off on early pain medicine. Our sweet son was hurting! We were also told that there were no beds in Neuroscience ICU, and Steven would have to remain in the recovery area until a bed opened up. (I didn't realize, but certain areas of recovery are considered an "intensive care unit".)
A parent from my school walked past us, as Mary and I were standing over Steven, and asked if I was a teacher at her son's school! Small world!!
My parents, Renee and Dale all had a chance to go back into the recovery area and see Steven, then they were ushered on home. There was no point staying. We did not have "easy access" to stay with Steven and tend to his needs as we do in the regular ICU.
Mary and I hung out in the 2nd floor waiting room...making camp so to speak. I was getting very "teary" about the possibility that I would only be able to see Steven for 5 minutes every hour that night...and only after asking for an escort back to his bed!
Thankfully around 6:30, a bed opened up and Steven was moved to the Neuroscience ICU.
4 Days
The Neuroscience ICU is a strange and frightening place. Beeps are going off everywhere, and since the glass doors to the rooms are often open, you can hear every machine beeping within a 20 foot radius.
Steven's first night was filled with horrible pain and a nurse more occupied with bowel movements than pain control. He was on a morphine infusion every two hours. The nurse tried each time to get him to take an oral medicine (not sure which one...) and an oral laxative, because she was worried about morphine causing constipation. I told her many time that Steven has a 90% chance of vomiting after brain surgery...she kept trying.
Finally around midnight, Steven took the oral pain medicine, smashed and mixed with a small amount of applesauce. He kept it down.
About an hour or two after that, the nurse mentioned that Steven had a swallow test in the morning. This tumor, while not on the brain stem, was deep in the cerebellum and was pushing the brain stem. At the mention of the swallow test, I told the nurse that Steven would only use morphine infusions to control pain, and nothing else would be offered via mouth until he passed that swallow test.
He passed the swallow evaluation the next morning.
Steven had an MRI around 3:30 a.m. I remember the neurosurgeon on duty pulling the pictures up on the bedside computer, and I remember smiling in my sleepy daze, at the sight of a missing tumor.
Friday (day) was spent with more visitors (Nana and Renee), more evaluations (swallow, residents, the ICU critical care doctor), some sweet patient care from a woman named Morgan, sitting in the chair, and several medicine/fatigue induced naps. Dr V came to see Steven. He again mentioned that the surgery was "by the books". He also mentioned that this tumor was "a beast" under the microscope. Steven talked to Dr V about some vision problems. He was having severe double vision at this point and nystagmus. Dr V assured him that the vision issues were likely a result of the swelling in the brain around the cranial nerves, and it would resolve with time. Steven managed a few very short walks on the ICU floor as the day went on. It was a crazy busy day for the nurses, so I managed the walks.
Friday evening I came home to shower, change clothes, and hurry back to the ICU.
Friday night was a much more peaceful night. While sleeping in the ICU is never robust nor prolonged, Steven and I both managed a decent nights sleep.
Saturday morning I watched the Gasparilla 15K and 5K from Steven's window. The finish line was just off to the right!! He was a bit dizzy and didn't make it over to the window.
Physical therapy and occupational therapy came to do some evaluating. They noted some weakness/lag in Steven's right leg and face and the general stumbling when walking. They also noted the nystagmus. A social worker came by. I believe her main objective was to make sure that Steven had a safe place to go to when he was discharged. She may have also been checking that he had someone with him and wasn't going to an empty apartment. I am not sure! An ophthalmololist came by to check Steven's optic nerves. All was well in the eyeball, but he did get a good reminder that he needs to schedule a complete retinal check with Dr Paven at USF. He was now chair bound because of the dilated pupils.
Around 6 pm or so the day nurse mentioned a transfer to the regular neuro-floor. Steven was moved to the 9th floor, west pavilion, soon after. He had a nice private room and a television that required watching several medical infomercials before any other channels were accessible.
I went home to sleep.
Sunday morning was routine...visits from nurses, the neurosurgical nurse practitioner, dietary, and odds and ends.
Steven was discharged sometime around 2.
These are the details that I never want to forget!!
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