Friday, December 31, 2010
On the road again
We are on the MassPike heading westward with the Prince himself. He is asleep in the back seat clutching a bottle of Powerade. We hope to be toasting the new year with champagne later tonight.
Proton vs. Photon accelerator
Ayal, a radiology fellow, came to talk to us and introduce the MGH radiology team. They recommend that Orion have his radiation treatment here because they have a proton machine ($155 million; one of about 8 in the country) rather than "just" a photon machine. The advantage is that photons go through the tumor and out the other side. Protons stop at the tumor and so protect more parts of the body from radiation. That's good.
He also told us that Orion will be treated by the pediatric radiology team since he's on the cusp age-wise and they have more experience with this kind of tumor.
He also told us that Orion will be treated by the pediatric radiology team since he's on the cusp age-wise and they have more experience with this kind of tumor.
The Neuro-Oncology Team, Chief amongst our weapons are chemo, radiation, and..
We just met Dr. Chi, today's Neuro-oncology attending. He talked with us about Orion's germinoma and gave a feel for the treatment plan. He said this is a very unusual cancer for an adult. Usually MGH has one case per year. There have been 3 this year. It's more common with children, so because of Orion's age, they will confer with the pediatric neuro-oncologists and may even decide to turn the treatment over to them. For now, Dr. Hochberg, whom we met earlier this week, will be the neuro-oncologist in charge.
Chi said the cancer is disseminated, so it needs to be treated more aggressively than if it were consolidated in one spot. (No definitive word on the spinal MRI from radiologists, but the oncologists say they saw no tumors.) They expect to do a mix of radiology and chemo over the next six months. The chemo will likely be 4 sessions requiring a 4-6 day stay each and radiation will be every day for a period of 5 weeks with unknown start. None of these treatments will start for a couple weeks. There will also be an endocrine team since the tumor is near the glands.
The appointments are starting to pour in. Orion's scheduled for 3 blood tests next week near home. We'll have an office visit (aka clinical visit) for more details on the treatment plan on 1/10 here in Boston.
Chi said the cancer is disseminated, so it needs to be treated more aggressively than if it were consolidated in one spot. (No definitive word on the spinal MRI from radiologists, but the oncologists say they saw no tumors.) They expect to do a mix of radiology and chemo over the next six months. The chemo will likely be 4 sessions requiring a 4-6 day stay each and radiation will be every day for a period of 5 weeks with unknown start. None of these treatments will start for a couple weeks. There will also be an endocrine team since the tumor is near the glands.
The appointments are starting to pour in. Orion's scheduled for 3 blood tests next week near home. We'll have an office visit (aka clinical visit) for more details on the treatment plan on 1/10 here in Boston.
Thursday, December 30, 2010
The verdict is in
Orion's neurosurgeon stopped by with the best of all possible tumor identifications- a germinoma. Prognosis is excellent after radiation and possibly some chemo. We will hear about treatment plans tomorrow.
http://en.wikipedia.org/wiki/Germinoma
XO
Sally and Steve
http://en.wikipedia.org/wiki/Germinoma
XO
Sally and Steve
Each team is wrapping up
The occupational therapist (Kim) said Orion did just fine. Her concern is not simple stuff like she has been asking of him, but the complex task of being a student. She wants him to meet with someone in our area twice before he goes back to school - and she clearly believes he should go back to school - to make sure he has techniques for doing his work successfully, e.g. taking notes.
The occupational therapist activity was followed by a visit from the physical therapist (Heidi). She says that Orion's record shows that they are planning to release him tomorrow. She wanted to do the tests to make sure he was ready from her standpoint. She tested his resting blood pressure, then took him for a walk, tested him, took him up and down a couple flights of stairs, and tested him again. She feels he's fine, but she reminded him that he just had an operation and at home, if he gets up at night, he should turn on the lights and make sure he's steady.
Next came the endochrinologist. She's also satisfied with his recovery, but wants him to continue on a low dose of steroids for the next 2 weeks and have lab tests to monitor progress.
Finally the neuro team stopped by. This did not include the surgeon we saw at lunch so no new information. But they, too, seem to be ready to let him go. Regardless of the news we get on the tumor, he needs to heal from this surgery before they do more stuff.
Still waiting for the surgeon (Ziv Williams).
The occupational therapist activity was followed by a visit from the physical therapist (Heidi). She says that Orion's record shows that they are planning to release him tomorrow. She wanted to do the tests to make sure he was ready from her standpoint. She tested his resting blood pressure, then took him for a walk, tested him, took him up and down a couple flights of stairs, and tested him again. She feels he's fine, but she reminded him that he just had an operation and at home, if he gets up at night, he should turn on the lights and make sure he's steady.
Next came the endochrinologist. She's also satisfied with his recovery, but wants him to continue on a low dose of steroids for the next 2 weeks and have lab tests to monitor progress.
Finally the neuro team stopped by. This did not include the surgeon we saw at lunch so no new information. But they, too, seem to be ready to let him go. Regardless of the news we get on the tumor, he needs to heal from this surgery before they do more stuff.
Still waiting for the surgeon (Ziv Williams).
Amongst our weapons are surprise, and fear, and....
Orion has ventured out with the occupational therapist on a mission to the hospital gift shop where he has been tasked with buying a card, a candle, a pack of gum , and a magazine. All must total under 10 dollars . Then he has to find his way back to his room. I doubt I could this!
As Sally and I had lunch I could see the neurosurgeon who did the ventricularostomy. The surgeon nodded to me. The surprise was when he walked over and said, "hey i will see you later with some sort of good news" . I asked if he was going to tease us with that and not say more. Yes.
So surprise and fear.
Always look on the bright side of life.
As Sally and I had lunch I could see the neurosurgeon who did the ventricularostomy. The surgeon nodded to me. The surprise was when he walked over and said, "hey i will see you later with some sort of good news" . I asked if he was going to tease us with that and not say more. Yes.
So surprise and fear.
Always look on the bright side of life.
We have moved out of intensive care
We just moved to our new digs after another cat scan. Now Orion has a roomy, a middle aged brain cancer patient on his last chemo round. Upbeat friendly guy.
New nurse seems great. Orion is free of all leads and tubes and his free to get up and walk anytime. We have retired to a lounge with view of the statehouse dome. There is family here with three young kids. Easy to imagine us eighteen years ago.
He is scheduled for a full spine MRI So they must be looking for skip lesions, an unpleasant thought.
He is cheery and his mental acuity seems back to super genius.
New nurse seems great. Orion is free of all leads and tubes and his free to get up and walk anytime. We have retired to a lounge with view of the statehouse dome. There is family here with three young kids. Easy to imagine us eighteen years ago.
He is scheduled for a full spine MRI So they must be looking for skip lesions, an unpleasant thought.
He is cheery and his mental acuity seems back to super genius.
12/30 Plans
Arrived to see Orion up and fresh. Today's nurse says that they'll do a CAT scan and move him to a regular unit today. Also, she'll remove the one arterial IV - yay, fewer tubes. No docs yet.
Wednesday, December 29, 2010
Video of endoscopic third ventricularostomy
This is not for the squeamish but I offer it up to the curious. This is the view by the surgeon through the endoscope as he moves through the third ventricle at the very center of the brain and then perforated the membrane at the floor. Like Orion, this patient has an obstructing lesion. When the hole is made you can see the release of pressure.
http://www.youtube.com/watch?v=8hnaKSpwYAg&feature=youtube_gdata_player
This is NOT Orion!
Sweet dreams.
http://www.youtube.com/watch?v=8hnaKSpwYAg&feature=youtube_gdata_player
This is NOT Orion!
Sweet dreams.
Yang can Yank
Dr. Yang came by, chatted with Orion, looked at his numbers and said "okay let's yank out that last EVD tube". Then he did it. So left in him, His only sensors are BP,EKG, O2.
He looks good. The plan is to move him out of the NICU tomorrow morning into a regular room.
This afternoon he walked around the unit six revolutions, dragging his tree of equipment.
NO pathology results yet.
He looks good. The plan is to move him out of the NICU tomorrow morning into a regular room.
This afternoon he walked around the unit six revolutions, dragging his tree of equipment.
NO pathology results yet.
Waiting game
It's so hard for families. We arrived at 8 and were told they weren't ready for us. As we waited, I saw a woman try to peer into the unit. The glass on the door to enter ICU is opaque at waist level and above, but clear at the floor. I saw her squat and look around at ground level. I said, "I'm glad I'm not the only one who does that." She and her family had been waiting since 4:30am to see their loved one who was brought in at 8:30 last night. You know the staff is doing what they think is best, but it would be nice if they gave a little update "still not ready" every 1/2 hour or so.
Anyway, we only waited 45 minutes and ta-da, found Orion with a single EVD. One of the doctors stopped by to say the plan is to remove the other this evening or tomorrow, then send him out of ICU. Orion was eating breakfast and delegated the task of filling out the menu forms for today to us. He's getting used to the routine which makes me sort of sad.
Rachel and Dave are on their way, and we hear that the physical therapist will take him for another walk.
Anyway, we only waited 45 minutes and ta-da, found Orion with a single EVD. One of the doctors stopped by to say the plan is to remove the other this evening or tomorrow, then send him out of ICU. Orion was eating breakfast and delegated the task of filling out the menu forms for today to us. He's getting used to the routine which makes me sort of sad.
Rachel and Dave are on their way, and we hear that the physical therapist will take him for another walk.
Tuesday, December 28, 2010
Promises unfulfilled
Well, that's a slight exaggeration. Some promises were met. He did have the CAT scan. They said it looked about the same as the prior one which they say is fine. In the afternoon the physical therapist took him for a walk - three times around the unit. That was good since Orion's legs were getting stiff.
Most of our time is spent waiting, which is surprisingly tiring. They have decided to wait one more day before removing the EVDs. (I almost called them IEDs. They have that look.) They want to be extra cautious. But it's a balancing act. Once they are out, they are out. But if you keep them in too long you risk infection. We now expect tomorrow for the first one, a day of watching, and then next day for the second, then another day of watching. So it looks like we may leave Friday.
We met the occupational therapist today too. She talked to Orion about making sure he's ready to go back to college - stairs, meals, independence, mental focus.
There's a constant flow of doctors stopping in for 5 minutes and checking on him. They all have done their homework and know all about his history. They are friendly and available for questions. Gives confidence.
Most of our time is spent waiting, which is surprisingly tiring. They have decided to wait one more day before removing the EVDs. (I almost called them IEDs. They have that look.) They want to be extra cautious. But it's a balancing act. Once they are out, they are out. But if you keep them in too long you risk infection. We now expect tomorrow for the first one, a day of watching, and then next day for the second, then another day of watching. So it looks like we may leave Friday.
We met the occupational therapist today too. She talked to Orion about making sure he's ready to go back to college - stairs, meals, independence, mental focus.
There's a constant flow of doctors stopping in for 5 minutes and checking on him. They all have done their homework and know all about his history. They are friendly and available for questions. Gives confidence.
Laugh till you die, I mean cry
Have you ever read Wonkette? Try it at Wonkette.com Dear son-in-law Dave put us onto it. An irreverent political blog. I was just reading it out loud to Orion and Sallly and started spiting out my nose. Sally took over and Orion caught the moment, eyes clamped shut, shoulders heaving, face turning red. Suddenly his ICP went crazy sending alarms ringing all over the ICU. His nurse appeared and was merely amused. Once we stopped reading Wonkette things quickly returned to normal. The lesson? NO laughing ever again.
As far as the day's promises go only the Cat Scan has happened.
As far as the day's promises go only the Cat Scan has happened.
A Day of Promises
Today, the 28th, is a day where Orion is promised a portable Cat Scan but it keeps being taken by STAT emergencies. He is not an emergency, thankfully. If the scan looks good they will remove one of the EVDs, those ventricular drains that have been closed for 24 hours now. All the numbers look great suggesting that the purpose of the surgery has been fulfilled. He also has been promised the removal of the catheter. A physical therapist has also appeared bubbling with enthusiasm about getting him up and walking the halls.
And special treat, Rachel and Dave may come down for a second visit from NH.
And special treat, Rachel and Dave may come down for a second visit from NH.
Monday, December 27, 2010
The Good, The Bad, and The Ugly
The Good: When we ask Orion what's concerning him, his answers are always schoolwork and grad school applications. (Since he's hooked up to monitors, we can see his pulse quicken at our questions, but perhaps that's always true with parental prying.) Yesterday, when he was having trouble holding focus, he couldn't remember any passwords. Today, he remembered, and we completed the U of Chicago application (due tomorrow) by cutting and pasting from other applications.
O gets a little nervous about the short-term memory loss, but they assure us this should only last a few days.
The Bad: While it's good that the pressure on his cranium is relieved, it's still remains true that he has a 4cm tumor on his brainstem that is likely inoperable. The tumor has not been identified and the possible prognoses and treatments go from bad to horrendous. (So wish for bad.) The preliminary pathology results are due Tues or Wed, but they may just send us home until they have the whole story. The head neurologist said to expect this to be a long haul.
The Ugly: What were the surgeons thinking? Shave half his head and leave the rest? Steve says he looks like a Samarai warrior with an 8" scar. He is not cute. Of course that's not what we're thinking about.
O gets a little nervous about the short-term memory loss, but they assure us this should only last a few days.
The Bad: While it's good that the pressure on his cranium is relieved, it's still remains true that he has a 4cm tumor on his brainstem that is likely inoperable. The tumor has not been identified and the possible prognoses and treatments go from bad to horrendous. (So wish for bad.) The preliminary pathology results are due Tues or Wed, but they may just send us home until they have the whole story. The head neurologist said to expect this to be a long haul.
The Ugly: What were the surgeons thinking? Shave half his head and leave the rest? Steve says he looks like a Samarai warrior with an 8" scar. He is not cute. Of course that's not what we're thinking about.
Some reading about what is happening
http://en.wikipedia.org/wiki/Endoscopic_third_ventriculostomy
Describes the surgery he had to relieve cranial pressure
http://en.wikipedia.org/wiki/Intracranial_pressure
Describes the dangers of high ICP
Describes the surgery he had to relieve cranial pressure
http://en.wikipedia.org/wiki/Intracranial_pressure
Describes the dangers of high ICP
Recovery
So now we are at Monday the 27th of December, 2010. It has been four days. Orion continues to improve. His surgery consisted of relieving his cranial pressure by providing a drain a the base of the third ventricle and also two stent drains that come out of the top of his head. Things have gone so well that those drains have been closed off. After a few more hours he will get another cat scan, this time from "portable Jim" who operates a portable scanner that he can wheel right into Orion' s room. If things look good one of the drains will be removed today and the other tomorrow. He is also close to being able to get out of bed and wander dragging his equipment tree with around the halls of nicu but I get ahead of reality there. He looks good and answered all his test correctly this morning. Ate a huge breakfast.
Sally and I stayed in a hotel one block away last night because of the snowstorm. MGH plows the local streets and side walks so it was easy and quick to get back to him.
Sally and I stayed in a hotel one block away last night because of the snowstorm. MGH plows the local streets and side walks so it was easy and quick to get back to him.
Sunday, December 26, 2010
The First Day, Thursday December 23, 2010
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.
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