Scott has been at the South San Francisco Kaiser Hospital since Friday night. He has a private room with a designated "sitter" and, because the hospital is not as busy as SF General or the Neuro Care Unit at Redwood City, he has received individualized care. He has participated in physical therapy daily (because they are able to come when he is awake, rather than on a rigid rotation schedule) and he has also received speech therapy. Scott is trying to talk but no real sound comes out. This is partly because he has not had any food or drink or any use of his throat muscles since the accident. On Saturday Scott passed the "swallow test" which means he is now able to swallow it is safe to give him things like ice chips and sherbet and to start to reintroduce pureed solid foods. These sensations will make him use those muscles again and will hopefully assist in vocalization. It seems to be working already as today he said his first word - JUICE!
Scott continues to progress physically and is sitting up for brief periods of time in bed with assistance. He is also awake for longer and longer between rest periods. Jen is still struggling to prevent medical staff from sedating him. She has succeeded in getting a doctor's order stating that he should only be sedated if necessary but that standard is pretty ambiguous. Despite this direction, in an effort to help him sleep or make him comfortable, Jen is finding that staff still sedate him frequently. Unfortunately, the sedatives throw off his sleep and wake cycles and make it very difficult for him to get the therapy he needs during the daytime. Eventually, when Scott becomes cognizant and can speak and advocate for himself, this will not be an issue. Until then, Jen will continue to be very vocal and demand that they stop sedating him.
Despite the great care he has received at the hospital, it is time for him to move down a level of care to a skilled nursing facility. Doctors are planning to transfer Scott tomorrow to a facility in San Leandro. Medical staff have assured Jen and Kay that the facility in San Leandro is better able to receive Scott and manage his level of care then the facility he was originally transferred to last week. We shall see if in fact that is true, but for now we remain optimistic. There is greater access to rehabilitation therapies in the nursing facility. So, ultimately it will be a very positive move for Scott even though it means he will be further away.
Monday, April 30, 2012
Saturday, April 28, 2012
Great Progress and a LONG Day
Yesterday was a day of great progress for Scott. He had long periods of awake time and seemed more alert and cognizant of his surroundings then ever. He is tossing and turning and moving all around. He is reaching for he bed rails and attempting to pull himself up. He is clearly trying to get up. Jen and I were able to sit him up for a few minutes in bed for the first time ever. He is reaching for Jen and Kay's hands and he and kisses them! He can clearly distinguish who they are, as he didn't attempt this with me. Also, when I left him yesterday and said good-bye, "I'll see ya soon" he raised his hand, gave a big thumbs up, and mouthed "bye Penny." He knew exactly who was with him. Also, when Jason visited later in the evening, he seemed to clearly recognize him and gave him a big wave when he arrived and when he left. This is amazing progress. It is no doubt due to healing and time. However, it may also be due to the fact that he was basically unmedicated all afternoon yesterday as a result of his transfer. We suspect this is the case because a nurse indicated to Jen, prior to his transfer, that Scott was becoming very active and that she had given him percocet to keep him safe in bed.
The question of how exactly to keep Scott safe and yet allow him to be active and alert to facilitate his recovery, is at the forefront right now. That new challenge quickly arose after transferring him to a skilled nursing facility. It was immediately clear that he was not safe there and it was a very, very scary transition. When I arrived to the facility around 3 pm Scott had just arrived and Jen and Kay were wide eyed. Jen stated they left him with the call button in his hand and told him to press it if he needs anything. Scary! Meanwhile, Scott his awake, smiling, grabbing the bed rails, and pretty close to launching himself right over the side of the bed. Scary! (And exciting!) Jen immediately got to work and within an hour or so they had made some alternative plans to move him closer to the nurses station, arrange for a "sitter" to be with him when family and friends are not there, place some motion sensors on him, etc. Despite these efforts, ultimately the doctor at the facility determined that he was not safe there and should be moved to a higher level of care in a hospital.
Last night Scott was transferred back to a hospital, Kasier South San Francisco, and as of 10 pm he, Kay, and Jen were still in the ER waiting for them to decide exactly where to place him. It was a very LONG day.
Over the next few days medical staff will determine what level of care Scott needs and where to safely place him. Medically, he is ready for skilled nursing facility level of care. Cognitively, he is not yet able to be directed to be safe nor is he able to advocate for himself. Ultimately it seems that the "sitter" idea - having someone there with him at all times to make sure he isn't going to hurt himself and to speak up for his needs - is a good one. Our concern is that if he remains in a higher level of care (or even in a SNF without an advocate) they may simply try to medicate him to keep him safe. It is understandable why they would want to/need to do this but it seems completely counter to recovery from this kind of injury where it is crucial for his brain to be able to think and process clearly and we want him to start to physically regain his strength.
The question of how exactly to keep Scott safe and yet allow him to be active and alert to facilitate his recovery, is at the forefront right now. That new challenge quickly arose after transferring him to a skilled nursing facility. It was immediately clear that he was not safe there and it was a very, very scary transition. When I arrived to the facility around 3 pm Scott had just arrived and Jen and Kay were wide eyed. Jen stated they left him with the call button in his hand and told him to press it if he needs anything. Scary! Meanwhile, Scott his awake, smiling, grabbing the bed rails, and pretty close to launching himself right over the side of the bed. Scary! (And exciting!) Jen immediately got to work and within an hour or so they had made some alternative plans to move him closer to the nurses station, arrange for a "sitter" to be with him when family and friends are not there, place some motion sensors on him, etc. Despite these efforts, ultimately the doctor at the facility determined that he was not safe there and should be moved to a higher level of care in a hospital.
Last night Scott was transferred back to a hospital, Kasier South San Francisco, and as of 10 pm he, Kay, and Jen were still in the ER waiting for them to decide exactly where to place him. It was a very LONG day.
Over the next few days medical staff will determine what level of care Scott needs and where to safely place him. Medically, he is ready for skilled nursing facility level of care. Cognitively, he is not yet able to be directed to be safe nor is he able to advocate for himself. Ultimately it seems that the "sitter" idea - having someone there with him at all times to make sure he isn't going to hurt himself and to speak up for his needs - is a good one. Our concern is that if he remains in a higher level of care (or even in a SNF without an advocate) they may simply try to medicate him to keep him safe. It is understandable why they would want to/need to do this but it seems completely counter to recovery from this kind of injury where it is crucial for his brain to be able to think and process clearly and we want him to start to physically regain his strength.
Thursday, April 26, 2012
Upcoming Transfer
Scott is scheduled to transfer to a skilled nursing facility tomorrow. Jen and Kay toured one facility to get an idea of what to expect. It seems there are a number of places he could go - and after some research Jen was able to provide a prioritized list of places she would like him to go to - but ultimately he will go where there is a bed available (which changes daily). As of this afternoon medical staff were unable to say where or when on Friday he would go.
It has been a relatively quiet few days around the hospital which, after multiple procedures last weekend, has been a welcome change. Scott is resting a lot but was awake a good part of the afternoon today. He was able to participate in physical therapy and was awake during visits from Jen, Kay and a friend and neighbor, Jason. In fact, when Jason was leaving the hospital, Scott even gave a wave.
During his awake time Scott is looking around and is focusing his attention on things. He is not yet able to communicate, but this will come. He is starting to show expressions of some emotions and Jennifer said yesterday he was even tapping his foot to the music.
It has been a relatively quiet few days around the hospital which, after multiple procedures last weekend, has been a welcome change. Scott is resting a lot but was awake a good part of the afternoon today. He was able to participate in physical therapy and was awake during visits from Jen, Kay and a friend and neighbor, Jason. In fact, when Jason was leaving the hospital, Scott even gave a wave.
During his awake time Scott is looking around and is focusing his attention on things. He is not yet able to communicate, but this will come. He is starting to show expressions of some emotions and Jennifer said yesterday he was even tapping his foot to the music.
Wednesday, April 25, 2012
Preparing for Transfer Again
Scott's mom, Kay, is back in town and her, Jen and Floyd have temporarily relocated to a hotel near the hospital. This will allow them to visit during the off times when Scott is most awake and alert.
Speaking of awake and alert, on Monday night nurses brought a dog in to sit with Scott. He immediately perked up and was very happy to have the companion to sit with on his bed. Jen is trying to find out how often they can bring the dog in. Maybe she can just sneak in one from home?
Scott will not undergo any more neuro surgeries for a few months until they replace the bone plate over the part of his skull that was removed. Until that time he does not need neuro care so doctors are deciding where he will be transferred in the interim. He may go to the Kaiser hospital in San Francisco temporarily but he will eventually be sent to a skilled nursing facility. We are hoping it will be one that is close to SF since this will be a time when he can start to receive visitors.
Speaking of awake and alert, on Monday night nurses brought a dog in to sit with Scott. He immediately perked up and was very happy to have the companion to sit with on his bed. Jen is trying to find out how often they can bring the dog in. Maybe she can just sneak in one from home?
Scott will not undergo any more neuro surgeries for a few months until they replace the bone plate over the part of his skull that was removed. Until that time he does not need neuro care so doctors are deciding where he will be transferred in the interim. He may go to the Kaiser hospital in San Francisco temporarily but he will eventually be sent to a skilled nursing facility. We are hoping it will be one that is close to SF since this will be a time when he can start to receive visitors.
Monday, April 23, 2012
A Private Room
Scott is now out of the ICU. For the first time since the accident, he is in a private room (not b/c of anything related to his condition, simply because there was one available when he was transferred back to the Neuro Observation Unit and he got it.) Jen thinks the quietness of the private room will help his recovery and it allows her to play some of his favorite music for him once again.
Sunday, April 22, 2012
Ups and Downs
It has been a roller coaster weekend. Scott went in yesterday to have the bone removed again and, following the surgery, would not wake from the anesthesia. He was taken to the ICU and was left intubated again. Needless to say, it was a very scary afternoon. I'm sure for Jen it almost felt like we were back to where we were five weeks ago. Luckily, he started to show signs coming out of the anesthesia by last night and by the time Jen had to leave he was moving around again and trying to open his eyes.
Doctors are closely watching the level of fluid that has started building again and are monitoring the pressure on his brain. They have inserted an additional drain to relieve the pressure.
Today Scott remained in the ICU but doctors were able to remove his breathing tube. He is opening his eyes and he gave big smiles to Jen, Andy and Andrea reminding us all, he is doing well and fighting hard.
Doctors are closely watching the level of fluid that has started building again and are monitoring the pressure on his brain. They have inserted an additional drain to relieve the pressure.
Today Scott remained in the ICU but doctors were able to remove his breathing tube. He is opening his eyes and he gave big smiles to Jen, Andy and Andrea reminding us all, he is doing well and fighting hard.
Saturday, April 21, 2012
More Surgery
Scott is in surgery right now to have the bone flap removed again. It turns out that tests of the bone (which are apparently can't be conducted any sooner than right before they use the bone again) showed that Scott's bone has become infected. Now it must be removed. In addition, the CT scan from this am showed increased pressure in Scott's brain since the bone was replaced. Thus, the surgeon indicated that given the pressure, it would need to be removed anyway. The neurosurgeon estimated that they will wait about three months to attempt the surgery again. Next time will be a synthetic piece of bone since the real one has become infected and can no longer be used.
Friday, April 20, 2012
Surgery Went Well
Scott is out of surgery and the neurologist reports that it went very well. Apparently they are not always able to return the original bone once it is removed but in Scott's case they were able to do so. This should be the last major procedure that he requires in the near future. Now it is on to recovery!
Thursday, April 19, 2012
Preparing for Surgery
Scott is scheduled for surgery tomorrow afternoon. Doctors plan to replace the "right bone flap" that was removed to reduce pressure from swelling in his brain. Doctors are anxious to get the skull bone back in place in hopes that it will cause his brain to shift. (His brain apparently shifted some as a result of swelling and placing the skull bone back on may trigger it to shift back.) This surgery is also good news because Scott is not keen on wearing a helmet. Until Scott has this bone replaced he is required to wear a helmet if he out of bed. Jen requested that the nurses try to move him to chair during some of his awake time but, apparently Scott fought off the nurses when they attempt to put a helmet on him. Maybe the helmet will not longer be required when the bone is back in place and healed?
Scott is starting to be awake a little more often. Unfortunately, it seems the times he is most awake (early morning and again in the evening) are generally not the times people are able to visit. By the time Jen arrives in the morning he is usually sound asleep again. This is a bit frustrating, because it means that he is also asleep when physical therapy and speech therapy come by to work with him. Also, Scott has not been tolerating the liquid diet. It is difficult to tell at this point whether it is the type of food or the quantity they are giving him. The doctors are trying to work this out through trial and error. These are just a few minor obstacles along his road to recovery.
Scott is starting to be awake a little more often. Unfortunately, it seems the times he is most awake (early morning and again in the evening) are generally not the times people are able to visit. By the time Jen arrives in the morning he is usually sound asleep again. This is a bit frustrating, because it means that he is also asleep when physical therapy and speech therapy come by to work with him. Also, Scott has not been tolerating the liquid diet. It is difficult to tell at this point whether it is the type of food or the quantity they are giving him. The doctors are trying to work this out through trial and error. These are just a few minor obstacles along his road to recovery.
Tuesday, April 17, 2012
Lots of Hope
Yesterday, Scott responded to the question "What is your name?" This is pretty amazing. He has now responded appropriately to questions four times over the past few days. This signifies that those functions in his brain - hearing, processing language, coming up with a response and vocalizing, are intact. Great news! It may take some time before he has those skills fully at his disposal but, they are in there.
Jennifer and I had a great meeting today with a friend, Nerissa Ko, who also happens to be a Neurologist at UCSF. She knows Scott's doctors and was able to contact them prior to our meeting and get some information about his case. She was extremely helpful in answering questions and setting some expectations for what lies ahead. Some points I took away from our two hour long meeting with her:
-- Scott is out of a coma. The fact that he is able to respond signifies that he is no longer in a "comatose" state. This is great news, as there is some indication from what I've read that the longer one remains in a coma the harder the recovery process. The fact that he is officially out of a coma is not entirely obvious when visiting him, he sleeps a lot and when awake seems like he is far away. However, Nerissa described his current state as being caught between two states of consciousness. She has reported that patients who recall this state later describe it like being in a fish tank - you can see out, but its really blurry and you can't really tell what your looking at, sounds is muffled and not entirely clear, you think you are dreaming and are inclined to just close your eyes and go back to sleep. She impressed upon us the importance of trying to bring him out of this state by bringing familiar sounds, smells, voices, all of which Jen has been doing. She said that, with assistance of nursing staff and others, we can take it further but trying to sit him up in a chair during the visits and trying to get him on a sleep/wake schedule.
--It is impossible to tell anyone's prognosis at this early stage. This is something that other doctors too have told us, but Nerissa explained that any kind of prognosis is only possible about six months after the accident. Even then, she stated, people end up defying those guesses.
--Scott is progressing well. It has been very difficult to gauge where Scott's recovery is and where he should be. It seems that no doctor has really given a straight answer to this question. It was helpful to hear from Nerissa that she was actually surprised he is already out of the ICU. She was very encouraged by the progress he has made so far and stated those were all very good signs in terms of potential for recovery. Beyond that, it seems impossible for anyone to say any more at this stage.
--The hard part is yet to come. Nerissa talked a lot about getting prepared for when Scott comes home. She said that he will not be sent home unless he can physically complete certain tasks on his own. I got the impression the physical part might come more quickly than the cognitive part -- she said that the acute rehabilitation process which they are already discussing will likely only last weeks (not months). Thus, there will be a lot to think about in terms of safety when he returns home. Doctors and social workers have already talked to Jen about the fact that he will require 24 hour a day care and supervision. For example, if Scott has memory impairments and/or temporary forgetfulness (which can be common in TBI patients) Jen will not be able to leave him alone to go walk the dogs around the block or run to the corner store. It is way to early to anticipate exactly what this will mean in Scott's case but hearing Nerissa describe the inevitability of it in more detail made me realize that the transition back home, which we are all so anxious and excited for, will also be very challenging.
Jennifer and I had a great meeting today with a friend, Nerissa Ko, who also happens to be a Neurologist at UCSF. She knows Scott's doctors and was able to contact them prior to our meeting and get some information about his case. She was extremely helpful in answering questions and setting some expectations for what lies ahead. Some points I took away from our two hour long meeting with her:
-- Scott is out of a coma. The fact that he is able to respond signifies that he is no longer in a "comatose" state. This is great news, as there is some indication from what I've read that the longer one remains in a coma the harder the recovery process. The fact that he is officially out of a coma is not entirely obvious when visiting him, he sleeps a lot and when awake seems like he is far away. However, Nerissa described his current state as being caught between two states of consciousness. She has reported that patients who recall this state later describe it like being in a fish tank - you can see out, but its really blurry and you can't really tell what your looking at, sounds is muffled and not entirely clear, you think you are dreaming and are inclined to just close your eyes and go back to sleep. She impressed upon us the importance of trying to bring him out of this state by bringing familiar sounds, smells, voices, all of which Jen has been doing. She said that, with assistance of nursing staff and others, we can take it further but trying to sit him up in a chair during the visits and trying to get him on a sleep/wake schedule.
--It is impossible to tell anyone's prognosis at this early stage. This is something that other doctors too have told us, but Nerissa explained that any kind of prognosis is only possible about six months after the accident. Even then, she stated, people end up defying those guesses.
--Scott is progressing well. It has been very difficult to gauge where Scott's recovery is and where he should be. It seems that no doctor has really given a straight answer to this question. It was helpful to hear from Nerissa that she was actually surprised he is already out of the ICU. She was very encouraged by the progress he has made so far and stated those were all very good signs in terms of potential for recovery. Beyond that, it seems impossible for anyone to say any more at this stage.
--The hard part is yet to come. Nerissa talked a lot about getting prepared for when Scott comes home. She said that he will not be sent home unless he can physically complete certain tasks on his own. I got the impression the physical part might come more quickly than the cognitive part -- she said that the acute rehabilitation process which they are already discussing will likely only last weeks (not months). Thus, there will be a lot to think about in terms of safety when he returns home. Doctors and social workers have already talked to Jen about the fact that he will require 24 hour a day care and supervision. For example, if Scott has memory impairments and/or temporary forgetfulness (which can be common in TBI patients) Jen will not be able to leave him alone to go walk the dogs around the block or run to the corner store. It is way to early to anticipate exactly what this will mean in Scott's case but hearing Nerissa describe the inevitability of it in more detail made me realize that the transition back home, which we are all so anxious and excited for, will also be very challenging.
Monday, April 16, 2012
Another Quiet Day
Jen, along with dad and Jean, spent the day at the hospital with Scott. It has been a very quiet day for him and thus far. His heart rate has been elevated today and its not clear exactly why. He may be in pain (they have provided additional pain medication), may be uncomfortable, or it may be simply because the room so warm. (There are several other patients, visitors, nurses, etc. in the Neuro Observation Unit room he is in now and it makes for a pretty toasty and sometimes busy atmosphere.) Jennifer has been able to bring his heart rate down somewhat by applying ice and cold compresses to his forehead. The nurses have given him a fan, which also helps. It doesn't appear that this is too much cause for concern but Jen plans to discuss it this afternoon with medical staff.
Sunday, April 15, 2012
A Big Thank You
The hospital called Jen this morning to tell her some momentous news - Scott whispered "thank you" to one of the nurses caring for him. Amazing! When we finally arrived in Redwood City he was wiped out, having also had some physical therapy this morning. He remained quiet and rested most of the day. Jen said he had a few smiles for Andrea and Andy this afternoon but mostly remained quiet and rested.
Meals for Jen and Floyd
Hey everybody,
We have some information for those of you who would like to help out with meals for Jen and Floyd. For people in San Francisco, we've set up a registry at:
Please register on the site, then choose a day that you'd like to deliver a meal. Meals can be delivered anytime during that day - if nobody is home, please leave the meal on the front porch. Jen and Scott's address is listed on the registry.
For those of you who are out of town, we recommend purchasing a gift card from Munchery. Just fill out the form at https://www.munchery.com/gifts and have the gift card delivered to Jen's email - godboldster at gmail dot com.
If you have any questions, or other ideas for how people can help out, please email me at jason at projectzero dot com.
Thanks!
j
Saturday, April 14, 2012
Let the Feeding Begin!
Scott's feeding tube was turned on this morning at 7 am...finally! It has been a very quiet day at the hospital, with him sleeping most of the day and recovering from his two recent surgeries.
Friday, April 13, 2012
Update
Jen is at the hospital now and said that Scott is very alert, with eyes open, and looking much better today. It seems that relieving some of the pressure on his brain has made a big impact. He is scheduled for surgery today to have the feeding tube installed. They will not be able to administer food through the tube for another 24 hours after the tube is placed in his stomach but doctors have assured Jen that he is fine since he is still receiving the IV fluids.
Thursday, April 12, 2012
Scott is Out of Surgery
Scott is out of surgery now and doctors were able to complete the procedure to place the shunt in his skull. This is great news! The shunt will allow for fluid to be drained and is apparently much less prone to infections and complications than the original type of drain he had.
Now its on to the feeding. Scott's neurosurgeon is meeting now with the GI specialist to figure out how to quickly and safely begin feeding Scott. Jen is hoping to meet with them soon to get this issue resolved tonight.
Now its on to the feeding. Scott's neurosurgeon is meeting now with the GI specialist to figure out how to quickly and safely begin feeding Scott. Jen is hoping to meet with them soon to get this issue resolved tonight.
More Procedures
Scott has settled in to his new digs in Redwood City. Doctors there are concerned about the increased build up of fluid and decided yesterday to install a shunt to relieve fluid buildup, swelling, and pressure. Scott was scheduled to undergo the procedure last night. Unfortunately, Scott's blood pressure dropped and, as a result, they were unable to complete the surgery. They were able to install a small drain in the meantime. Scott was stabilized and transferred from the critical care unit back to the ICU. He remains in ICU today.
We are all concerned about the length of time that Scott has now gone with out a feeding tube in place. Today = day 5. (The tube which was inserted in his mouth and extended down to his stomach was removed on Sunday in anticipation of his transfer. However, it took a few days for him to transfer and the tube was left out. Since arriving at Kaiser Redwood City Jen has been asking and asking when the tube will be replaced. She was told they wanted to evaluate his ability to swallow first, and wanted to explore other options, but thus far staff have not replaced the tube.) He is scheduled for surgery this morning at 10 am to have a gastric tube placed directly in to his stomach. Given the difficulty he had under anesthesia yesterday, it is not clear whether they will attempt this procedure today or not.
Making sure that Scott starts getting fed has become a source of great stress. Jen believes, and I certainly agree, that Scott is having a difficult time tolerating these procedures right now because he is hungry and does not have his full strength. She and my dad are at the hospital together today and she says she will refuse to leave tonight until medical staff find some way to administer nourishment to Scott. I'm very hopeful it will get resolved today.
We are all concerned about the length of time that Scott has now gone with out a feeding tube in place. Today = day 5. (The tube which was inserted in his mouth and extended down to his stomach was removed on Sunday in anticipation of his transfer. However, it took a few days for him to transfer and the tube was left out. Since arriving at Kaiser Redwood City Jen has been asking and asking when the tube will be replaced. She was told they wanted to evaluate his ability to swallow first, and wanted to explore other options, but thus far staff have not replaced the tube.) He is scheduled for surgery this morning at 10 am to have a gastric tube placed directly in to his stomach. Given the difficulty he had under anesthesia yesterday, it is not clear whether they will attempt this procedure today or not.
Making sure that Scott starts getting fed has become a source of great stress. Jen believes, and I certainly agree, that Scott is having a difficult time tolerating these procedures right now because he is hungry and does not have his full strength. She and my dad are at the hospital together today and she says she will refuse to leave tonight until medical staff find some way to administer nourishment to Scott. I'm very hopeful it will get resolved today.
Tuesday, April 10, 2012
Scott has Transferred to Redwood City
Well, after all the back and forth, doctors decided to transfer him tonight to Kaiser Redwood City. They have neurological specialists in the Redwood City Hospital and they will be able to treat Scott long term. Jen and Scott's cousin, Barry, travelled down there tonight to see him after he was transferred and settled in. She is hoping to be able to meet with his new team of medical staff tomorrow.
Transfer Delayed
Jen just received word that Scott's transfer will be delayed at least another day. Doctors are concerned that the fluid isn't draining as quickly as it should and it is beginning to pool in some areas so they would like to keep an eye on it for another day before transferring him. If the fluid continues to pool, it will increase pressure on his brain and they will have to put a shunt in to relieve some of fluid and pressure. Hopefully they will not have to do this because it is possible that the problem will just correct itself with enough time.
Since his transfer has been delayed doctors will be inserting a gastric feeding tube but unfortunately they will not be able to do so until tomorrow. He is on IV fluids and is hydrated.
On a very positive note Scott had his first day of physical therapy. I wasn't there so can't say for sure what happened but it sounds like they worked on moving his limbs around, triggering some key muscles. The nurses said he responded so well that he nearly crawled over the side of the bed! He has also started moving his left arm some too.
Since his transfer has been delayed doctors will be inserting a gastric feeding tube but unfortunately they will not be able to do so until tomorrow. He is on IV fluids and is hydrated.
On a very positive note Scott had his first day of physical therapy. I wasn't there so can't say for sure what happened but it sounds like they worked on moving his limbs around, triggering some key muscles. The nurses said he responded so well that he nearly crawled over the side of the bed! He has also started moving his left arm some too.
Still Waiting for Transfer
We are waiting for the final sign off on Scott's transfer. They decided to perform a final CT scan this morning to determine if transfer was safe and whether or not he needed additional neurology care. It has been a nerve-racking process, waiting for transfer, because they removed his feeding tube on Sunday in preparation for the move. He is still hooked up to liquids but we are very anxious to get him settled in the new location and get him back on his feeding tube.
Sunday, April 8, 2012
Preparing for Transfer
Today doctors removed the fluid drain which started the transfer process for Scott. This is bittersweet news. On the one hand, after two weeks in their care, doctors at SF General finally feel he is stable enough for transfer to a Kaiser hospital, which means his condition is progressing and is very good news. On the other hand he will no longer be located a few blocks from his home which will make commuting back and forth more difficult for Jen. He will either be moved later on tonight or tomorrow morning and is expected to go to the San Francisco Kaiser Hospital.
In other news medical staff attempted to place a cap on Scott's head to keep him comfy and he reached right up and took it off. Jen said he has also been trying to mess with the oxygen tubes in his nose and other little things that appear to be irritating him -- all good signs of responsiveness!
In other news medical staff attempted to place a cap on Scott's head to keep him comfy and he reached right up and took it off. Jen said he has also been trying to mess with the oxygen tubes in his nose and other little things that appear to be irritating him -- all good signs of responsiveness!
Breathing Tube is Out
Yesterday doctors removed Scott's breathing tube. This is a big step. He looked much more comfortable without it. The swelling continues to go down and the next step will be removing the fluid drain which, as I mentioned before, will signify that he is ready for transfer. He is still moving around in his bed, primarily his right side and opening his eyes and looking around. As of the time I left the hospital he had not responded to any voice commands yet.
Saturday, April 7, 2012
A Day of Rest
Friday was a day of rest for Scott after all the progress made the day before. He did not respond to voice commands but, I think that maybe how progress goes - two steps forward one day, one step back the next. He is still opening his eyes and looking around the room.
The results of the CT scan show that he is draining fluid on his own. Doctors have the fluid drain clamped for now but have left it in just in case.
They are talking about trying to remove the breathing tube today, and continue to seem very anxious to get it out. I understood previously that they did not want to take it out until he was awake enough and responsive enough for nurses to be able to prompt him to take a deep breath. It doesn't seem like we are quite there yet so I am not clear how they are able to remove it now. The doctor did indicate that he breathing has leveled off and is at a healthy and normal level so perhaps they are just feeling confident about where he is with his breathing and are not concerned about needing to wake him to take a deep breath.
Once the breathing tube and the fluid drain are removed Scott will be transferred to another facility. We aren't exactly sure where that is yet, it will depend on his precise needs. If he needs access to a neurosurgeon he will be moved to a hospital in Redwood City. His transfer could happen as soon as early next week.
The results of the CT scan show that he is draining fluid on his own. Doctors have the fluid drain clamped for now but have left it in just in case.
They are talking about trying to remove the breathing tube today, and continue to seem very anxious to get it out. I understood previously that they did not want to take it out until he was awake enough and responsive enough for nurses to be able to prompt him to take a deep breath. It doesn't seem like we are quite there yet so I am not clear how they are able to remove it now. The doctor did indicate that he breathing has leveled off and is at a healthy and normal level so perhaps they are just feeling confident about where he is with his breathing and are not concerned about needing to wake him to take a deep breath.
Once the breathing tube and the fluid drain are removed Scott will be transferred to another facility. We aren't exactly sure where that is yet, it will depend on his precise needs. If he needs access to a neurosurgeon he will be moved to a hospital in Redwood City. His transfer could happen as soon as early next week.
Friday, April 6, 2012
Meals for Jen and Floyd
Thanks for all the love and support from everyone, it is definitely helping Jen care for Scott and Floyd right now.
Friends have been making and bringing meals over to the house, which has been extremely helpful. In the next few days/weeks Jason will set up a calendar so that we can actually schedule some meal deliveries moving forward. Jen has had a lot of help the past few weeks but this is going to be a long haul and there will be many months ahead when meals will be needed. Also, he will find a meal delivery service so that anyone who isn't local (or who is local but unable to cook) can also participate in providing meals.
Friends have been making and bringing meals over to the house, which has been extremely helpful. In the next few days/weeks Jason will set up a calendar so that we can actually schedule some meal deliveries moving forward. Jen has had a lot of help the past few weeks but this is going to be a long haul and there will be many months ahead when meals will be needed. Also, he will find a meal delivery service so that anyone who isn't local (or who is local but unable to cook) can also participate in providing meals.
Two Thumbs Up!
I am sorry that I wasn't able to post yesterday because there has actually been great progress made in the last 24 hours.
Scott is now opening both of his eyes. He appears to be moving his head to follow voices in the room and he is also focusing his eyes on people who are talking. Most importantly, in terms of his diagnostic condition, he raised his thumb up on the command of a nurse two times yesterday. (The title of this post is a little deceiving because he isn't actually raising both thumbs, it is only the right thumb and he did it twice. As of now he has shown very little movement on the left side of his body.)
Jen and I got to meet with the attending neurologist yesterday and she explained that she is very hopeful, now that he is beginning to wake up, that he will be on the trajectory of recovery and rehabilitation. Awesome. She reiterated that it will be a long and hard road that will take months and could take years but said that she sees no reason now why it can't happen. It was a little difficult to hear that as of two days ago the doctors were thinking that might not be the case but that is no matter now. She stated that on the spectrum of brain injury Scott's is severe. She also stated that one of the great challenges in his condition is that there has been and still is significant swelling. The swelling is going down but right now his brain remains out of alignment and pushed over to one side, the side where they have removed his skull, because there is simply not enough room for it.
They still have the fluid drain clamped, which means three things. First, he is draining enough fluid on his own that they may be able to remove it very soon. Second, if it gets removed it could signal that he is "safe for transfer". As soon as he is deemed safe for transfer he will be moved to a Kaiser hospital for insurance purposes. (His treatment at SF General is covered by Kaiser but they are eager to get him in one of their facilities.) The final thing about the fluid clamp is that the buildup in fluid is putting a healthy amount of pressure on his brain to push it back over to the correct side. Doctors want to see his brain align again as quickly as possible.
If he can wake enough to respond to voice commands they will be able to remove the breathing tube and will not have to do a tracheotomy because they will be able to just wake him to take a breath if his breathing slows. Let's hope he gives a few more thumbs up today!
Scott is now opening both of his eyes. He appears to be moving his head to follow voices in the room and he is also focusing his eyes on people who are talking. Most importantly, in terms of his diagnostic condition, he raised his thumb up on the command of a nurse two times yesterday. (The title of this post is a little deceiving because he isn't actually raising both thumbs, it is only the right thumb and he did it twice. As of now he has shown very little movement on the left side of his body.)
Jen and I got to meet with the attending neurologist yesterday and she explained that she is very hopeful, now that he is beginning to wake up, that he will be on the trajectory of recovery and rehabilitation. Awesome. She reiterated that it will be a long and hard road that will take months and could take years but said that she sees no reason now why it can't happen. It was a little difficult to hear that as of two days ago the doctors were thinking that might not be the case but that is no matter now. She stated that on the spectrum of brain injury Scott's is severe. She also stated that one of the great challenges in his condition is that there has been and still is significant swelling. The swelling is going down but right now his brain remains out of alignment and pushed over to one side, the side where they have removed his skull, because there is simply not enough room for it.
They still have the fluid drain clamped, which means three things. First, he is draining enough fluid on his own that they may be able to remove it very soon. Second, if it gets removed it could signal that he is "safe for transfer". As soon as he is deemed safe for transfer he will be moved to a Kaiser hospital for insurance purposes. (His treatment at SF General is covered by Kaiser but they are eager to get him in one of their facilities.) The final thing about the fluid clamp is that the buildup in fluid is putting a healthy amount of pressure on his brain to push it back over to the correct side. Doctors want to see his brain align again as quickly as possible.
If he can wake enough to respond to voice commands they will be able to remove the breathing tube and will not have to do a tracheotomy because they will be able to just wake him to take a breath if his breathing slows. Let's hope he gives a few more thumbs up today!
Wednesday, April 4, 2012
One Eye Opened
Scott has fully opened one of his eyes. He is still in a coma, but one eye open seems like a hopeful sign. Doctors are beginning to get concerned about the length of time that he has had the breathing tube in place and are beginning to talk about longer term options for helping Scott breath as long as he remains in a coma. The possibility of a tracheotomy was discussed with Jen today, but I am not clear on when that would take place. The neurologist suggested that as long as the breathing tube remains in place they are unable to begin any type of physical therapy. So, this seems like it will ultimately be a positive procedure in terms of getting him access to even greater care.
The doctors decided to not drain the fluid from his brain today in order to see whether or not he was starting to be able to drain it himself. They plan to conduct another CT scan tomorrow to determine if it is draining or if it is collecting near the base of his neck.
The doctors decided to not drain the fluid from his brain today in order to see whether or not he was starting to be able to drain it himself. They plan to conduct another CT scan tomorrow to determine if it is draining or if it is collecting near the base of his neck.
Tuesday, April 3, 2012
The Latest
Doctors stopped Scott's sedation medication about 24 hours ago. It will take a day or two before the effects are fully out of his system. At this point there have been no significant changes in his condition, though Scott has shown a little more responsiveness such as moving his legs more since coming off the medication. He is still unconscious, it can take some time for someone to come out of a coma.
They performed another CT scan yesterday and the swelling is continuing to slowly go down. Doctors seem concerned that they are still draining fluid that they believe his brain should be draining on its own. I'm not sure exactly what this means but they did indicate that tomorrow they would stop draining off the fluid to start to see just how much fluid his system is processing.
Today doctors removed a monitor that was inserted in his skull and was measuring the oxygen level to his brain. His oxygen level has remained stable and healthy for a while so, they felt comfortable removing this monitor. One less machine hooked up to Scott right now seems like a very good thing.
They performed another CT scan yesterday and the swelling is continuing to slowly go down. Doctors seem concerned that they are still draining fluid that they believe his brain should be draining on its own. I'm not sure exactly what this means but they did indicate that tomorrow they would stop draining off the fluid to start to see just how much fluid his system is processing.
Today doctors removed a monitor that was inserted in his skull and was measuring the oxygen level to his brain. His oxygen level has remained stable and healthy for a while so, they felt comfortable removing this monitor. One less machine hooked up to Scott right now seems like a very good thing.
Monday, April 2, 2012
A Strong Hand Squeeze
Scott is fighting the pneumonia. He still has a fever, though the doctors and nurses have managed to keep it low by giving him Tylenol and switching his antibiotic last night.
Jen and Kay are spending the morning with him and Jen reports that he is starting to try to open one of his eyes. Also, when Kay was leaning over him telling him all about what sweet little Floyd has been up to, Scott gave her a strong hand squeeze.
Yay!
Jen and Kay are spending the morning with him and Jen reports that he is starting to try to open one of his eyes. Also, when Kay was leaning over him telling him all about what sweet little Floyd has been up to, Scott gave her a strong hand squeeze.
Yay!
Sunday, April 1, 2012
Pneumonia
Well I suppose it was inevitable but it was still hard to hear from the doctors that Scott now has pneumonia. It is the result of the respirator remaining in his lungs for so long and an infection has developed. Doctors wanted to remove the respirator sooner, but felt that he wasn't quite ready for it.
The doctors will treat the pneumonia separately from the injury and the brain trauma, though both treatments will happen simultaneously. He was started on antibiotics for the pneumonia this afternoon and doctors believe it will take a week or so for the infection to clear up. He requires a little closer monitoring now because they need to ensure that his blood oxygen levels and his blood pressure are high enough during the pneumonia for his brain to get what it needs. So, they have the respirator turned back on and he is once again relying on the machines to breath for him.
The nurses are also monitoring his fever closely because there is some risk to his brain recovery if the fever spikes too high.
Things seemed a little shaky this am but, by this afternoon, he blood pressure, oxygen and fever were all under control.
The pneumonia feels like a set back, for sure. But it is only temporary and once Scott beats the infection he'll be right back on track.
The doctors will treat the pneumonia separately from the injury and the brain trauma, though both treatments will happen simultaneously. He was started on antibiotics for the pneumonia this afternoon and doctors believe it will take a week or so for the infection to clear up. He requires a little closer monitoring now because they need to ensure that his blood oxygen levels and his blood pressure are high enough during the pneumonia for his brain to get what it needs. So, they have the respirator turned back on and he is once again relying on the machines to breath for him.
The nurses are also monitoring his fever closely because there is some risk to his brain recovery if the fever spikes too high.
Things seemed a little shaky this am but, by this afternoon, he blood pressure, oxygen and fever were all under control.
The pneumonia feels like a set back, for sure. But it is only temporary and once Scott beats the infection he'll be right back on track.
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