We will try to piece together what has been happening by starting with a series of emails. Steve and Orion left for an eye exam at 8:30 because Orion was complaining of double vision. We also planned to visit Sally's father with the little dog, Darcy and stop at a grocery store. We left the house as if we would be back by 2. Our appt. was for 9:30 and we expected it to be an hour. Two hours later at 11:30 I sent this to Sally:
"We are still At Dr. Wadmans. Orion seems to have optic nerve problems and we are going to be referred to a Hampshire neurologist. Given the time we might get lunch before seeing your father. The dog is in car for two hours so far."
By 2:30 we had visited Sam, had lunch at Amherst Chinese, gone back to the optometrist and been told this:
Dr. Wadmans exam went along until he looked and saw swelling of the optic nerve. Then he did this peripheral vision test which showed problems in both eyes and so pointed to the place where the optic nerves merge and cross above the pituitary. This suggested inflammation or a tumor of the gland. He called the neurologist that works with him and the neurologist recommended immediately going to Cooley and ruling out a tumor.
We got to Cooley and he was taken for a Cat scan.
Now I will do some research.
XO"
"He is in again having come out for a moment. He chose not to have me go in with him but they know I am out here.
I have done some checking and it is not pretty. If there is A tumor it Means surgery of one kind or another. Most tumors are benign."
On Dec 23, 2010, at 2:45 PM, "Waisbrot, Sally" wrote:
"Thanks. Let me know what you learn. It's creepy.
Xx,"
Steve: "Now in the ER room with him. The triage nurse kept getting worried that something might be wrong with me and it was unnerving them so they sent me in to see O. He is going to have a CAT scan. They have taken many blood samples. He is cheery. He says one Of the nurses said " oh, I had a pituitary tumor removed just recently"
XO
Don't forget you have Darcy."
On Dec 23, 2010, at 4:51 PM, "Waisbrot, Sally" wrote:
I will leave now, stop at store for something easy, feed ida, and start
fire. You can call anytime (except the next 1 minute when I'll be in the
bathroom.)
Xx,
S
-----Original Message-----
From: Steve Sauter [mailto:Steve@stevesauter.com]
Sent: Thursday, December 23, 2010 4:48 PM
To: Waisbrot, Sally
Subject: Re: Now at CDH
Well, yes, there is poor Ida, home since 8:30. Also the fire will be out
and we need wood. Also we never got to the store.
Steve Sauter
On Dec 23, 2010, at 4:39 PM, "Waisbrot, Sally"
wrote:
I guess it makes sense for me to stay here til you're done, right? Or
do you want me to go home to Ida?
Took 1/2 hour for CAT scan results to be read with D.
Xx,
S
-----Original Message-----
From: Steve Sauter [mailto:Steve@stevesauter.com]
Sent: Thursday, December 23, 2010 4:28 PM
To: Waisbrot, Sally
Subject: Re: Now at CDH
We are at cat scan now. They say it will be fast and then a doctor
will come and see us with a diagnosis and next step. This will
probably be the ER doctor and not a neurologist.
Steve Sauter
On Dec 23, 2010, at 4:13 PM, "Waisbrot, Sally"
wrote:
CAT scan for my father was very fast. So this is an ER visit, not a
lab referral? (I don't know how this stuff works.) Xx, S
On Dec 23, 2010, at 2:53 PM, "Waisbrot, Sally"
wrote:
Best to have just one of us there so it's not overwhelming. I'm glad
it's you. (Darcy is fine.) Xx, S
By 6 pm we had gotten the results of the cat scan- a 4 cm mass on the brain stem. We were told that CDH could not deal with it and he would be transferred to BayState in Springfield. An ambulance was called and I would follow. Meanwhile another doctor came in to tell us that he had heard that Orion was a Swarthmore senior and that he was an alum. He told us he had a recurring dream that he was back at Swarthmore and that he did not tell anyone that he was now a doctor. He did not want to leave. Then he would awake and be here at work.
"We are still At Dr. Wadmans. Orion seems to have optic nerve problems and we are going to be referred to a Hampshire neurologist. Given the time we might get lunch before seeing your father. The dog is in car for two hours so far."
By 2:30 we had visited Sam, had lunch at Amherst Chinese, gone back to the optometrist and been told this:
Dr. Wadmans exam went along until he looked and saw swelling of the optic nerve. Then he did this peripheral vision test which showed problems in both eyes and so pointed to the place where the optic nerves merge and cross above the pituitary. This suggested inflammation or a tumor of the gland. He called the neurologist that works with him and the neurologist recommended immediately going to Cooley and ruling out a tumor.
We got to Cooley and he was taken for a Cat scan.
Now I will do some research.
XO"
"He is in again having come out for a moment. He chose not to have me go in with him but they know I am out here.
I have done some checking and it is not pretty. If there is A tumor it Means surgery of one kind or another. Most tumors are benign."
On Dec 23, 2010, at 2:45 PM, "Waisbrot, Sally" wrote:
"Thanks. Let me know what you learn. It's creepy.
Xx,"
Steve: "Now in the ER room with him. The triage nurse kept getting worried that something might be wrong with me and it was unnerving them so they sent me in to see O. He is going to have a CAT scan. They have taken many blood samples. He is cheery. He says one Of the nurses said " oh, I had a pituitary tumor removed just recently"
XO
Don't forget you have Darcy."
On Dec 23, 2010, at 4:51 PM, "Waisbrot, Sally" wrote:
I will leave now, stop at store for something easy, feed ida, and start
fire. You can call anytime (except the next 1 minute when I'll be in the
bathroom.)
Xx,
S
-----Original Message-----
From: Steve Sauter [mailto:Steve@stevesauter.com]
Sent: Thursday, December 23, 2010 4:48 PM
To: Waisbrot, Sally
Subject: Re: Now at CDH
Well, yes, there is poor Ida, home since 8:30. Also the fire will be out
and we need wood. Also we never got to the store.
Steve Sauter
On Dec 23, 2010, at 4:39 PM, "Waisbrot, Sally"
I guess it makes sense for me to stay here til you're done, right? Or
do you want me to go home to Ida?
Took 1/2 hour for CAT scan results to be read with D.
Xx,
S
-----Original Message-----
From: Steve Sauter [mailto:Steve@stevesauter.com]
Sent: Thursday, December 23, 2010 4:28 PM
To: Waisbrot, Sally
Subject: Re: Now at CDH
We are at cat scan now. They say it will be fast and then a doctor
will come and see us with a diagnosis and next step. This will
probably be the ER doctor and not a neurologist.
Steve Sauter
On Dec 23, 2010, at 4:13 PM, "Waisbrot, Sally"
CAT scan for my father was very fast. So this is an ER visit, not a
lab referral? (I don't know how this stuff works.) Xx, S
On Dec 23, 2010, at 2:53 PM, "Waisbrot, Sally"
wrote:
Best to have just one of us there so it's not overwhelming. I'm glad
it's you. (Darcy is fine.) Xx, S
By 6 pm we had gotten the results of the cat scan- a 4 cm mass on the brain stem. We were told that CDH could not deal with it and he would be transferred to BayState in Springfield. An ambulance was called and I would follow. Meanwhile another doctor came in to tell us that he had heard that Orion was a Swarthmore senior and that he was an alum. He told us he had a recurring dream that he was back at Swarthmore and that he did not tell anyone that he was now a doctor. He did not want to leave. Then he would awake and be here at work.
I followed Orion's ambulance down where the drivers joked to him that they were glad to see he had Blue Cross insurance because they would be paid. This would become a recurring theme of our journey- who has insurance and who did not.
Arriving at BayStates OR all was confusion and crowds. We were instantly taken in and their OR doctors poured over his paperwork and images. An hour or so later Sally had caught up with us and we were told that Baystate lacked the skill for this and they were transferring us to Massachusetts General Hospital in Boston where a team of neurologists were waiting for us. I left my car in the garage and got in the ambulance with Orion for the one and a half hour drive. Meanwhile Sally went home to arrange for a house-sitter and to a pack overnight gear.
By 11:30 pm we pulled into MGH and the acute unit of their OR was waiting for us. Shortly after we started being seen by a steady stream of neurologists asking the same questions about double vision, headaches and history. A decision was made to give him an MRI. By 6 he was in MRI but they had already decided on surgery for later that day based on the swelling and pressure in his brain that they could see in the cat scan. They claimed that anyone else whose cat scan looked like this would be in a coma. They were dazzled that he was an "A" student at Swarthmore majoring in physics. He was transferred to Neurology sciences intensive care unit, the very place were Ted Kennedy had been. Same nurses, same doctors.
His surgeon, Ziv Williams came in and explained the procedure called "endoscopic third ventricularostomy". Sally asked him how many times he had performed this and he said a lot. Sally said how much is a lot and he smiled and said most neurol surgeons did one per year and he had done three so far this year. So this would be his fourth!
The neurosurgeon seemed competent and calm so Orion, who is an adult, signed the permission. We would be allowed to come along to the OR and sit with him during the room prep and the team run through. We could hear them discussing equipment, techniques and the order of the procedure. We had to wear Tyvek scrubs, boots and bonnets. There would be two neurosurgeons, two anesthesiologists and two nurses that we could see. After he was wheeled in we went off to wait for the next five hours.
When he was done and cleaned up we were allowed to see him. It was not pretty. He had a 12 lead harness flowing from his body, Strange tubes drained cerebral fluid from the top of his shaved head. He had a catheter.
Now it was Friday evening the 24th. We made the decision to take Sally's cousin Susan's offer of a room in her house in Jamaica Plain up. We were exhausted having been up now for nearly 40 hours. We both slept soundly for 8 hours and then on Christmas Day the 25th we were back in the NICU by 8 am. A long day lay ahead of visits from surgeons, neurologists, endocrinologists and our wonderful nurses on their 12 hour shifts, one in charge of Orion. Even though we had slept soundly, he was not allowed such a luxury. Each and every hour he would be awakened and asked who he was, where he was, what the date was. He was asked to identify such items as pens and watch and their parts and describe their function he was asked simple math problems and when he did them quickly was asked such things as what is the Pythagorean theorem . He was asked who the president was and when he correctly answered Barack Obama he was asked who the V.P was. He got all these correct most of the time but not all. He missed a few recall cues, sometimes got the date off by one day and remarkably, when asked what he was doing there he said he was awaiting an operation for a brain tumor. When we told him he had it he was stunned but relieved.
Each and every hour this was repeated and it was painful to hear any mistakes or hesitation in any of his answers. The doctors saw this and told us he was a great pleasure and one of the most capable patients they ever had. All were interested in talking about Swarthmore, physics and his plans for grad school. His main doctor, Fred Hochberg, even started talking about cooking German desserts.
His room is incredibly big. In the space where he at MGH was they were putting 30 patients at BayState. The view out the window, which he cannot see, looked right out onto the Charles River and MIT. Harvard lay in the distance.
When he was done and cleaned up we were allowed to see him. It was not pretty. He had a 12 lead harness flowing from his body, Strange tubes drained cerebral fluid from the top of his shaved head. He had a catheter.
Now it was Friday evening the 24th. We made the decision to take Sally's cousin Susan's offer of a room in her house in Jamaica Plain up. We were exhausted having been up now for nearly 40 hours. We both slept soundly for 8 hours and then on Christmas Day the 25th we were back in the NICU by 8 am. A long day lay ahead of visits from surgeons, neurologists, endocrinologists and our wonderful nurses on their 12 hour shifts, one in charge of Orion. Even though we had slept soundly, he was not allowed such a luxury. Each and every hour he would be awakened and asked who he was, where he was, what the date was. He was asked to identify such items as pens and watch and their parts and describe their function he was asked simple math problems and when he did them quickly was asked such things as what is the Pythagorean theorem . He was asked who the president was and when he correctly answered Barack Obama he was asked who the V.P was. He got all these correct most of the time but not all. He missed a few recall cues, sometimes got the date off by one day and remarkably, when asked what he was doing there he said he was awaiting an operation for a brain tumor. When we told him he had it he was stunned but relieved.
Each and every hour this was repeated and it was painful to hear any mistakes or hesitation in any of his answers. The doctors saw this and told us he was a great pleasure and one of the most capable patients they ever had. All were interested in talking about Swarthmore, physics and his plans for grad school. His main doctor, Fred Hochberg, even started talking about cooking German desserts.
His room is incredibly big. In the space where he at MGH was they were putting 30 patients at BayState. The view out the window, which he cannot see, looked right out onto the Charles River and MIT. Harvard lay in the distance.
Did the nurses come up with the Pythagorean Theorem question or did O suggest it?
ReplyDeleteIn a macabre twist of events, it is too bad this wasn't caught earlier so that he could dazzle the grad school admissions people with "I'm a physics major at Swarthmore with an A average and a tumor that would have put lesser people into a coma."
-C