The following “updates” were sent out on an almost-daily basis by a variety of family members after Jon’s accident on January 8, 2011. The recipient list included family and friends and eventually totaled about 100 people who were following Jon’s progress daily. Many, many people responded to these updates with encouraging words and input after their own visits to the bedside; those which were addressed to the entire group are included below, as well. On February 5th the daily updates stopped going out as emails and began to appear on this blog site.
Jan 9, 2011
As many of you know, our son Jon sustained several injuries when the car he was driving at high speed went out of control Friday night. He remains stable in the trauma center at Fresno Community Hospital (Room T-524). He is heavily sedated for pain management reasons and also because of a ET tube. He does arouse and appears to respond to requests of a simple nature which seems to corroborate the negative CT scan of his head. Besides fractures of the jaw right humerus, are many ribs broken which also is paired with a bruise (contusion) to lung. The resulting bruise has decreased his ability to maintain adequate oxygen levels on room air, so extra oxygen is being given. We are waiting for the lung injury to repair itself satisfactorily to allow for the surgeons to repair fractures. And, when the lungs allow the ET tube can come out and he can have a normal passage way. Until then he remains suspended in time and is being sedated. He can receive visitors all day with some exceptions. No flowers; cards can be taped on his wall. All of your prayers are welcomed. It is only speculation but maybe he will be over the lung problems in the next three to four days, and maybe out of ICU in a week. Until then, we hope and pray for his recovery.
Brian
1/10/11
An Update on Monday Morning; Jon was moved to a roto bed which slowly turns him side to side in an effort to prevent bed sores but also to better aerate his lungs. That happened late last night while Bethany was there. No news this AM until we talk to the MDs. No news may be good news.
Thanks to all of you who emailed back .
Brian
1/11/11
Jon has developed a P. E. in each lung. These are small. Treatment is an issue because of the following. Jon's last brain CT showed a small amount of blood in his posterior temporal ventricles, which the neurosurgeons questioned and called calcifications. My review with a second radiologist suggests that this is blood delayed in appearance after his initial CT. The neurosurgeon calls for a new brain CT to help decide on treatment of the PE , the two options being either heparin, or alternative ant-coagulant or an intravenous umbrella. We are waiting for the new CT. Jon's arterial saturations which dipped this am and which led to the pulmonary arterial CT have improved. Jon's condition is otherwise stable.
1/16/11
Family;
I received a call form one of the thoracic surgeons at the request of Maciej Kopacj. He had many insightful additions to add and offered to get involved. Most importantly was the information that there is a removeable venous filter available which could benefit Jon at the time they turn off the heparin. We need to learn first if the clots came from the legs. Having this available would make his period off heparin a safer bet. He questioned why if there was concern that Jon had the “HIT” syndrome, why they did not use the alternative drug to heparin. A question still in my mind. Today I hope to get answers to this and more from the medical pulmonologists. Jon’s blood pressure has been up for the past three days. The team assigns it to his anxiety state. I wonder if it could be simply fluid overload. That can be answered by checking the cumulative tally of his inputs and outputs. On the roto-bed they can’t weigh him daily which cold have answered that question. That is another question for the medical team. I am looking forward to a good discussion with Dr. Evans of that team. We plan to be there til maybe 2 when we will visit with Ally and Rebecca. Home earlier today to catch up on some things here.
Brian
1/18/11
Greetings from the 6th floor "lobby."
Jon awoke this morning wanting "to walk," but since he has not been cleared yet by his doctors to roam freely unassisted, instead Jackee wheeled him in his chair down to the cafeteria, where they ate breakfast together. He then wanted to make a detour to the gift shop, where Jon purchased two stuffed animals for his girls. Ally and Becca paid him a visit later that morning, brought by Susan, and presented him with a get well Daddy gift basket they'd made, including sunflower seeds, baseball cards, a rubics cube, a star wars PEZ dispenser, and a book on coaching basketball, as well as several drawings the girls had made for him. It was a reunion enjoyed by all...especially the part when Jon made claws with his hands and monster face with his still-wired-shut grill! Terrifying. I might need to post that on his Facebook wall.
Because therapy is minimal on weekends, he had only brief sessions this morning but was an alert and active participant by Jackee's report. Luckily he had lots of human interaction to keep his brain rehabbing throughout the day, starting with Jackee in the morning, then Susan and the girls, followed by Beth, Kim Clague and myself with two babies in tow, and then high school friends Scott and Natalie who kept him busy for almost two hours reminiscing and working those neuronal synapses. It was no wonder that he crashed for about 3 hours at 4:30, utterly exhausted! Kim and I let him sleep while we got dinner, then rousted him up for another hour and a half hoping to tire him out before bed. His thinking in the latter part if the day was much more confused, which we attributed to exhaustion. For example, he recalled the events of the whole day until the nap, but after it was unable to tell me who he'd seen that morning or afternoon. This sort of thing is common with brain injuries and is greatly influenced by fatigue, which again speaks to the full--and highly therapeutic-- day Jon had.
One thing more that must be shared: Jon was complaining to Jackee this morning that her glasses--which usually work well for him--were not working. She asked if he wanted to use his own contacts instead, but he deferred, saying they were too much of a hassle. "Why don't I just take my contact out," says Jon. WHAT!?!?! And he proceeds to pop a contact from his left eye. Hello, contact! You may just hold the record for longest in-place contact. What's even funnier is what Jon said about his missing, right eye contact.
"That contact may have just saved my life."
As someone visiting said yesterday, Too bad your sense of humor hasn't come back yet, Jon.
Until tomorrow,
Kristin
1/19/11
Hi, everybody. Jonny seemed a bit more alert today, and was definitely more active. The trauma team-his primary group of doctors--came by in the early am and stopped his ativan, which was one of the meds he's been on which can be very sedating. The hope is that with that gone, he will start to become a bit more responsive, and indeed, as the day wore on he did seem to be more active and awake. He did not do much in the way of responding to commands (doctorspeak for "requests" to move limbs, squeeze hands, open eyes, etc) but maybe his girlfriend Jackee will have more to add once she sees him this evening. A big relief today was the discontinuation of the Roto-bed he's been contending with and the return of the regular, flat, ICU bed, which seems a lot more comfortable for Jon and allows for more movement. He was bending his right knee and hip, for example, and moving his head slowly from side to side this afternoon. The plan for tomorrow is to continue to wean off sedating medications (mostly pain meds, at this point) and to watch as his lungs continue to improve so that he may be taken off the ventilator, hopefully in the next several days. Thanks to Dad, Mom, Stacey, Calvin, Jackee, Courtney, Nick and others who stopped by to visit with Jon today. I know he appreciates all the love, both in person and from afar, that he is receiving. Wishing all a good and restful night, Kristin
1/20/11
Hello all. Today seemed a bit better for Jon. Though he remains on the ventilator in the ICU, and his responsiveness waxes and wanes, during his more alert moments he seemed to be following commands at least half the time to squeeze hands, look this way, raise eyebrows, even to attempt a smile. Very encouraging! It seems to take an hour or so to "warm him up," per Jackee, who has been really putting Jon through his paces. Once alert, though, he seems to pretty reliably track visitors with his eyes as they move about his room. Nate, Mariah, Courtney, Stacey, Jackee, Sharon Kopacz, Nick D, and myself all spent some time by the bedside today, and possibly others, sorry if I missed you. He has now been off Ativan over 24 hours, which may have contributed to some of his non-responsiveness, and will likely be on it again for an MRI this evening, which has been ordered to help determine if there is another reason his neurological status is not improving faster. Tomorrow may find him drowsier for that. Also tomorrow his doctors have been asked to consider removing some of his pain meds to see if his responsiveness improves further. The big picture plan is to wean him from the ventilator and move to a med surg bed. Keep the prayers and love coming! Love, Kristin
1/21/11
Greetings, folks.
As expected, Jon was a bit zonked this morning due to the sedating medications given the night before for the MRI. His state of consciousness started to pick back up around 2pm, and by the day's end Jon was again reassuring us by following some commands (raising eyebrows, puckering his lips for "kisses," wiggling his ears, which I didn't know he even knew how to do, and even squeezing hands with his right as well as left side). His state of alertness does wax and wane, however, which is not uncommon for folks who have suffered brain trauma. Additionally, a review of his MRI revealed a couple of things. One, he does NOT have the extensive, small hemorrhages commonly seen with severe injury to the neuronal tracts, also known as "diffuse axonal injury," or DAI. This is a good thing. He does however have what looks to be mild DAI on the right side of his brain, which could account for the fact that his left leg moves less reliably than the right. This is the kind of injury that can repair itself with time and physical therapy. The third notable thing was the continued presence of some fluid accumulation over the brain, in a larger amount than seen previously. This was not surprising, given that the reason for the fluid accumulation (shearing injuries to the small structures which are responsible for reabsorbing cerebral spinal fluid, or CSF) has not disappeared, and it will take some time for this to heal. However, this may necessitate drainage, and may also account for the waxing and waning consciousness. Tomorrow we will talk to the team about their plans for draining this. One other development today was the removal of Jon's chest tube, which had been draining fluid from his injured right lung. No more chest tube! Hooray! His lungs seem to be on the mend and we await the team's decision to wean him from the ventilator, which likely will happen soon. After that happens he may even be eligible for a regular, Med/Surg bed, which would mean visits from his daughters. Double hooray!
Again, many appreciative thanks to those coming by, sending cards, offering to help, holding his hand, holding babies while others hold Jon's hand, and taking care of him in all the ways you are. He feels the love, I have no doubt.
Best,
Kristin
As expected, Jon was a bit zonked this morning due to the sedating medications given the night before for the MRI. His state of consciousness started to pick back up around 2pm, and by the day's end Jon was again reassuring us by following some commands (raising eyebrows, puckering his lips for "kisses," wiggling his ears, which I didn't know he even knew how to do, and even squeezing hands with his right as well as left side). His state of alertness does wax and wane, however, which is not uncommon for folks who have suffered brain trauma. Additionally, a review of his MRI revealed a couple of things. One, he does NOT have the extensive, small hemorrhages commonly seen with severe injury to the neuronal tracts, also known as "diffuse axonal injury," or DAI. This is a good thing. He does however have what looks to be mild DAI on the right side of his brain, which could account for the fact that his left leg moves less reliably than the right. This is the kind of injury that can repair itself with time and physical therapy. The third notable thing was the continued presence of some fluid accumulation over the brain, in a larger amount than seen previously. This was not surprising, given that the reason for the fluid accumulation (shearing injuries to the small structures which are responsible for reabsorbing cerebral spinal fluid, or CSF) has not disappeared, and it will take some time for this to heal. However, this may necessitate drainage, and may also account for the waxing and waning consciousness. Tomorrow we will talk to the team about their plans for draining this. One other development today was the removal of Jon's chest tube, which had been draining fluid from his injured right lung. No more chest tube! Hooray! His lungs seem to be on the mend and we await the team's decision to wean him from the ventilator, which likely will happen soon. After that happens he may even be eligible for a regular, Med/Surg bed, which would mean visits from his daughters. Double hooray!
Again, many appreciative thanks to those coming by, sending cards, offering to help, holding his hand, holding babies while others hold Jon's hand, and taking care of him in all the ways you are. He feels the love, I have no doubt.
Best,
Kristin
1/22/11—early edition
Needed to get this out right away, more to come tonight, but wanted to let you all know That Jon is awake! And trying to talk through a valve they placed today on his trach!!! And saying things like "my jaw is !?"&$'d up". Shoot up a rocket!! They are holding off on a shunt because he looks so good. Wahoo! It is a great day. Love, Kristin
1/22/11
Hello, all.
What a wonderfully encouraging day it was! As mentioned in my earlier post, Jon woke up today and started communicating meaningfully! Neurosurgery was so impressed with his mental status that they are deferring on placing a shunt to drain the fluid collecting around his brain, and instead will watch his clinical status and do a follow up CT to make sure it resolves. Speech therapy placed a valve over his trach so that he could make sounds and he said several things through his clenched jaw, wired shut as it is since the surgery last week. He even spewed some expletives, reassuring us that the Old Jon is indeed on the mend. Doctors at his bedside relayed that he will only have to contend with the wiring for another week. Of note, Jon's memory of the accident is completely absent, and he wanted to hear details but was not able to recall them several hours later, and asked to have his tubes and trach explained multiple times. Additionally, his level of alertness continues to wax and wane, with his foggiest periods occurring for about an hour and a half after he has gotten pain meds. Other changes today included the discontinuation of the chest tube (I though it had come out yesterday, but I was mistaken) and a change to a less powerful narcotic for his pain which will only be given on an as-needed basis. Jon continues to be visited by multiple family members and friends, and asked after by so many of you. Thank you all for your continued prayers and positive thoughts, and above all for the love you have and are showing in all sorts of ways for Jon. I know he appreciates it.
Hoping for a restful evening for all, but most of all for Jon,
Kristin
What a wonderfully encouraging day it was! As mentioned in my earlier post, Jon woke up today and started communicating meaningfully! Neurosurgery was so impressed with his mental status that they are deferring on placing a shunt to drain the fluid collecting around his brain, and instead will watch his clinical status and do a follow up CT to make sure it resolves. Speech therapy placed a valve over his trach so that he could make sounds and he said several things through his clenched jaw, wired shut as it is since the surgery last week. He even spewed some expletives, reassuring us that the Old Jon is indeed on the mend. Doctors at his bedside relayed that he will only have to contend with the wiring for another week. Of note, Jon's memory of the accident is completely absent, and he wanted to hear details but was not able to recall them several hours later, and asked to have his tubes and trach explained multiple times. Additionally, his level of alertness continues to wax and wane, with his foggiest periods occurring for about an hour and a half after he has gotten pain meds. Other changes today included the discontinuation of the chest tube (I though it had come out yesterday, but I was mistaken) and a change to a less powerful narcotic for his pain which will only be given on an as-needed basis. Jon continues to be visited by multiple family members and friends, and asked after by so many of you. Thank you all for your continued prayers and positive thoughts, and above all for the love you have and are showing in all sorts of ways for Jon. I know he appreciates it.
Hoping for a restful evening for all, but most of all for Jon,
Kristin
1/23/11
Hello.
Today's update will be short, mostly because it seemed to be a fairly uneventful day for Jon. He continued to show signs of having suffered trauma to the brain, and during his alert and awake times he was just as chatty and aware as he was yesterday, which is encouraging. He seemed more tired today, likely from all the excitement of yesterday, so we let him sleep and rest a lot. I have attached a nice handout given to us by the speech therapist yesterday regarding what to expect with brain-injured patients. I would encourage all those visiting Jon to read it, as I will refer to the cognitive levels in my updates from now on. For example, today he vacillated between Rancho levels 3 and 5 when he was not sleeping. Per speech therapy, once folks reach the fourth level, their prognosis will always include progression through the following stages, which is really enouraging.
Today Jon was placed on "contact precautions" when the sputum cultured from his tracheostomy grew out a bacteria called acinetobacter. What this means for Jon is that he will remain on antibiotics and will likely not have a problem. What this means for visitors is that we all will have to wear those charming little yellow paper napkin gowns and latex gloves when visiting his room, until the infection is cleared. This bacterium is found widely on surfaces throughout places like hospitals, and should not be a problem to you unless you yourself are immunocompromised (have cancer, HIV, have had a transplant and are on medications to suppress your immune function, etc). And of course, don't forget to wash your hands when visiting the hospital.
Stay well-rested and enjoy the game for Jon, if you are watching...
Best,
Kristin
Today's update will be short, mostly because it seemed to be a fairly uneventful day for Jon. He continued to show signs of having suffered trauma to the brain, and during his alert and awake times he was just as chatty and aware as he was yesterday, which is encouraging. He seemed more tired today, likely from all the excitement of yesterday, so we let him sleep and rest a lot. I have attached a nice handout given to us by the speech therapist yesterday regarding what to expect with brain-injured patients. I would encourage all those visiting Jon to read it, as I will refer to the cognitive levels in my updates from now on. For example, today he vacillated between Rancho levels 3 and 5 when he was not sleeping. Per speech therapy, once folks reach the fourth level, their prognosis will always include progression through the following stages, which is really enouraging.
Today Jon was placed on "contact precautions" when the sputum cultured from his tracheostomy grew out a bacteria called acinetobacter. What this means for Jon is that he will remain on antibiotics and will likely not have a problem. What this means for visitors is that we all will have to wear those charming little yellow paper napkin gowns and latex gloves when visiting his room, until the infection is cleared. This bacterium is found widely on surfaces throughout places like hospitals, and should not be a problem to you unless you yourself are immunocompromised (have cancer, HIV, have had a transplant and are on medications to suppress your immune function, etc). And of course, don't forget to wash your hands when visiting the hospital.
Stay well-rested and enjoy the game for Jon, if you are watching...
Best,
Kristin
1/24/11
Greetings. Jon had an eventful last 24 hours. Late yesterday he was transferred to a step-down unit, and then this afternoon to the rehab floor. This is good news! It means he is expected to be able to participate in 3 hours of physical therapy a day. Wow! What a change from the early ICU days! What this means for the rest of us is that morning times are no longer a great time to visit, unless you would like to go with him to physical therapy, which is fine. Afternoons he will likely be resting and recuperating from therapy, but in his room. Please continue to come see Jon but do be respectful of his need to rest if you come by and he is sleeping. Sitting by his bed and holding his hand or just being a calming, friendly presence when he opens his eyes seems to be appreciated by Jon. He continues to move between several states of wakefulness, and at his most alert he is asking questions (today he wanted to know what was happening with his accounts at work!) and expressing sponateous thought. For example, his sister Beth played him a sound recording of his daughters talking to him about their day, and he got teary-eyed and held Beth's hand and said, "Thank you for looking after my girls." At other times, however, he does not respond to speech and seems drowsy.
1/25/11
Hello, all.
Today was the first official day of rehab for Jon. It proceeded as days will for likely the next several weeks, with occupational, physical, speech, and activities of daily living therapists taking turns working with him, either at the bedside or in nearby rooms on the same floor.
One set back was that Jon's doctor seemed to think he needed Ativan as a prn med, and indeed his nurses gave it to him last night, leaving him rather groggy for his activity today. When asked how he felt around 1pm he said, "sleepy." I asked his nurses to get the doctor to rethink that and he has agreed to take it off the medlist. We learned out Ativan lessons back in the icu.... Unfortunately those didn't transfer with him. If he continues to be drowsy tomorrow the shunt may need reconsideration.
His physiatrist checked in with my parents this morning and predicted three weeks here before Jon can be discharged to another facility. He recommended an assisted living facility which specializes in rehabilitation, the closest one being in Bakersfield. He anticipated that Jon would need to be there three months.
This news came as a bit of a shock to many of us. As Jon has progressed so well since "waking up" and looks like an entirely different person since his early days in the ICU, I think I for one was expecting the same degree of improvement each day. I have been saying this will be a long road for Jonny from the start... I think it's just starting to be clearer what that road will look like. Your prayers and cards and well wishes and visits are all so welcome, and needed. Keep 'em coming.
Love, Kristin
1/26/11
Well, folks, just two days into his stint on the rehab floor and Jonny pulled out his ROCKSTAR act! Those who have not had a chance to see him since the ICU would be amazed at the transformation. Jon looks like Jon again, complete with Adidas sweats and an Austin Powers impersonation for me tonight, which was the high point for me personally during his alert time.
The day started off slowly, with lots of drowsy and confused behavior, but at around 1:30 his personality started to emerge as well as his effort, and he actually walked for the physical therapist, with minimal help. He also was able, with some coaxing, to move himself in a wheelchair by "walking" it with his feet. All of that wiped him out and, as he had not slept well the night before, much of the afternoon was spent snoozing as well. There is still some question as to where all the diminished mental status comes from--lack of sleep? Seroquel? The subdural hygroma that was there a week ago? Or simply the result of having had a brain injury? In all likelihood all are contributing, though we have asked neurosurgery to reevaluate the need for a follow up CT scan. If the fluid (hygroma) there is increasing there may still be the need for a shunt.
Thanks to those who spent time with him even though he may have been too wiped out to engage (John, Mariah, Beth, Nathan, Barry, Dusty, Clarice, Courtney, Jackee and others I may have missed), and to those who brought jamba protein drinks (John) and baby holding arms (Courtney, Clarice, Beth, Sharon, Nathan).... I so appreciate you.
Sleep well, all. Tomorrow is another day, with more progress expected. Best, Kristin
The day started off slowly, with lots of drowsy and confused behavior, but at around 1:30 his personality started to emerge as well as his effort, and he actually walked for the physical therapist, with minimal help. He also was able, with some coaxing, to move himself in a wheelchair by "walking" it with his feet. All of that wiped him out and, as he had not slept well the night before, much of the afternoon was spent snoozing as well. There is still some question as to where all the diminished mental status comes from--lack of sleep? Seroquel? The subdural hygroma that was there a week ago? Or simply the result of having had a brain injury? In all likelihood all are contributing, though we have asked neurosurgery to reevaluate the need for a follow up CT scan. If the fluid (hygroma) there is increasing there may still be the need for a shunt.
Thanks to those who spent time with him even though he may have been too wiped out to engage (John, Mariah, Beth, Nathan, Barry, Dusty, Clarice, Courtney, Jackee and others I may have missed), and to those who brought jamba protein drinks (John) and baby holding arms (Courtney, Clarice, Beth, Sharon, Nathan).... I so appreciate you.
Sleep well, all. Tomorrow is another day, with more progress expected. Best, Kristin
1/27/11
Hello, dear friends and family of Jon.
Today was the most encouraging day, yet. Jon is doing so well that his therapists got him out of bed a second time to show off his progress to the attending physician as he passed unexpectedly through the unit this morning. His speech therapist told me she has to reassess him twice daily because he is moving forward so quickly. Go, Jon! Today he had his trach removed completely, walked independently, and when asked by his speech therapist to list words that start with "m," said, "mitochondria...mitosis," and on from there. He also was able to start to grasp the severity of what occurred, as evidenced by questions such as, incredulous, "so, how long have I been here?" and "what's the turnaround time for this?"
He was much clearer today, as well, and by report had had a pretty restful night. He did end up getting another head CT scan, which showed persistence of the fluid there but no worsening, which is good. An x-ray of his right arm was done today, as there seems to be more swelling around his surgical site than expected. Results are still pending. At Jon's request I did acupuncture on the arm today, which took his pain down from a six out of ten to "no pain." Go, acupuncture!
So encouraging, all in all. Keep up the love, encouraging words, and texts/emails/facebook messages. I share them all with Jon, and he enjoys them.
Much love, Kristin
Today was the most encouraging day, yet. Jon is doing so well that his therapists got him out of bed a second time to show off his progress to the attending physician as he passed unexpectedly through the unit this morning. His speech therapist told me she has to reassess him twice daily because he is moving forward so quickly. Go, Jon! Today he had his trach removed completely, walked independently, and when asked by his speech therapist to list words that start with "m," said, "mitochondria...mitosis," and on from there. He also was able to start to grasp the severity of what occurred, as evidenced by questions such as, incredulous, "so, how long have I been here?" and "what's the turnaround time for this?"
He was much clearer today, as well, and by report had had a pretty restful night. He did end up getting another head CT scan, which showed persistence of the fluid there but no worsening, which is good. An x-ray of his right arm was done today, as there seems to be more swelling around his surgical site than expected. Results are still pending. At Jon's request I did acupuncture on the arm today, which took his pain down from a six out of ten to "no pain." Go, acupuncture!
So encouraging, all in all. Keep up the love, encouraging words, and texts/emails/facebook messages. I share them all with Jon, and he enjoys them.
Much love, Kristin
1/28/11
Dear friends and family,
Jon was amazing today! His personality is most definitely back. He excelled at therapy, by Jackee's reports, had two long visits in the 6th floor "lobby" waiting room with a variety of friends and family, and wanted to read to me from Stephen Colbert's new book, I AM AMERICA (AND SO CAN YOU!). He read me the first page and chuckled through much of it. But the highlight of the day was most certainly the reunion with his girls, Becca and Ally, after almost three weeks of being in the hospital and unable to see them.
On the medical end of things, Jon's arm and jaw continue to heal, and it sounds like he may get some of the wiring in his jaw clipped in the next week, which will allow for a little more movement of his jaw and an upgrading of his diet to thicker, mashed potato consistency foods (right now he is on pureed liquids). He will still have some restriction of movement, with the larger wiring apparatus staying in for another 3-5 weeks. His nurses assure us that he can stop his overnight tube feedings through the PEG tube once he is able to drink everything they send up to him during the day. His trach is completely out and the skin there is healing.
Finally, Jon's awareness of his situation is becoming stronger, and he is starting to take stock of what has happened and the ramifications of the accident. Whereas yesterday he was asking for very little spontaneously, today he initiated conversations and often seemed to want a listener to "bear witness" to his thoughts about the accident, his missing his girls, his situation. He remains deeply moved by the outpouring of support and cards and emails that wish him well...please keep those coming.
I am organizing a list of friends and family who are willing to commit to a 1-2 hour visit with Jon over the next couple of months. As of now, there is still the thought that he will need additional rehab in Bakersfield once he is discharged from Community. If you are interested, please let me know with an email including your name, phone number, email, and preferred date(s) and time(s) you would like to visit.
With love and gratitude,
Kristin
1/29/11
Greetings from the 6th floor "lobby."
Jon awoke this morning wanting "to walk," but since he has not been cleared yet by his doctors to roam freely unassisted, instead Jackee wheeled him in his chair down to the cafeteria, where they ate breakfast together. He then wanted to make a detour to the gift shop, where Jon purchased two stuffed animals for his girls. Ally and Becca paid him a visit later that morning, brought by Susan, and presented him with a get well Daddy gift basket they'd made, including sunflower seeds, baseball cards, a rubics cube, a star wars PEZ dispenser, and a book on coaching basketball, as well as several drawings the girls had made for him. It was a reunion enjoyed by all...especially the part when Jon made claws with his hands and monster face with his still-wired-shut grill! Terrifying. I might need to post that on his Facebook wall.
Because therapy is minimal on weekends, he had only brief sessions this morning but was an alert and active participant by Jackee's report. Luckily he had lots of human interaction to keep his brain rehabbing throughout the day, starting with Jackee in the morning, then Susan and the girls, followed by Beth, Kim Clague and myself with two babies in tow, and then high school friends Scott and Natalie who kept him busy for almost two hours reminiscing and working those neuronal synapses. It was no wonder that he crashed for about 3 hours at 4:30, utterly exhausted! Kim and I let him sleep while we got dinner, then rousted him up for another hour and a half hoping to tire him out before bed. His thinking in the latter part if the day was much more confused, which we attributed to exhaustion. For example, he recalled the events of the whole day until the nap, but after it was unable to tell me who he'd seen that morning or afternoon. This sort of thing is common with brain injuries and is greatly influenced by fatigue, which again speaks to the full--and highly therapeutic-- day Jon had.
One thing more that must be shared: Jon was complaining to Jackee this morning that her glasses--which usually work well for him--were not working. She asked if he wanted to use his own contacts instead, but he deferred, saying they were too much of a hassle. "Why don't I just take my contact out," says Jon. WHAT!?!?! And he proceeds to pop a contact from his left eye. Hello, contact! You may just hold the record for longest in-place contact. What's even funnier is what Jon said about his missing, right eye contact.
"That contact may have just saved my life."
As someone visiting said yesterday, Too bad your sense of humor hasn't come back yet, Jon.
Until tomorrow,
Kristin
Jon awoke this morning wanting "to walk," but since he has not been cleared yet by his doctors to roam freely unassisted, instead Jackee wheeled him in his chair down to the cafeteria, where they ate breakfast together. He then wanted to make a detour to the gift shop, where Jon purchased two stuffed animals for his girls. Ally and Becca paid him a visit later that morning, brought by Susan, and presented him with a get well Daddy gift basket they'd made, including sunflower seeds, baseball cards, a rubics cube, a star wars PEZ dispenser, and a book on coaching basketball, as well as several drawings the girls had made for him. It was a reunion enjoyed by all...especially the part when Jon made claws with his hands and monster face with his still-wired-shut grill! Terrifying. I might need to post that on his Facebook wall.
Because therapy is minimal on weekends, he had only brief sessions this morning but was an alert and active participant by Jackee's report. Luckily he had lots of human interaction to keep his brain rehabbing throughout the day, starting with Jackee in the morning, then Susan and the girls, followed by Beth, Kim Clague and myself with two babies in tow, and then high school friends Scott and Natalie who kept him busy for almost two hours reminiscing and working those neuronal synapses. It was no wonder that he crashed for about 3 hours at 4:30, utterly exhausted! Kim and I let him sleep while we got dinner, then rousted him up for another hour and a half hoping to tire him out before bed. His thinking in the latter part if the day was much more confused, which we attributed to exhaustion. For example, he recalled the events of the whole day until the nap, but after it was unable to tell me who he'd seen that morning or afternoon. This sort of thing is common with brain injuries and is greatly influenced by fatigue, which again speaks to the full--and highly therapeutic-- day Jon had.
One thing more that must be shared: Jon was complaining to Jackee this morning that her glasses--which usually work well for him--were not working. She asked if he wanted to use his own contacts instead, but he deferred, saying they were too much of a hassle. "Why don't I just take my contact out," says Jon. WHAT!?!?! And he proceeds to pop a contact from his left eye. Hello, contact! You may just hold the record for longest in-place contact. What's even funnier is what Jon said about his missing, right eye contact.
"That contact may have just saved my life."
As someone visiting said yesterday, Too bad your sense of humor hasn't come back yet, Jon.
Until tomorrow,
Kristin
1/30/11
I wanted to mention that Jon now has a memory book that his speech therapist has provided. After your visit with jon I encourage each of you to have jon tell you facts about the visit to be recorded in his book. Even small details like the time you arrived and general topics of discussion will aid in Jon's therapy and recovery. Each of the therapists will reference his book and ask him to recall the events of his day. Jon's therapy sessions only consume 4 hours of his day from Monday to Saturday so that leaves a ton of time for us to help log up and help them reflect on with him :)
Have great visits!
Jackee
On Jan 30, 2011, at 10:51 AM, Scott Miller wrote:
To anyone who hasn't visited Jon in the past few days- it's worth it. Both in terms of the relief you will feel as a friend and for the value of the interaction toward Jon's recovery.
In the couple of hours that Natalie and I spent with him yesterday, he was only mildly confused. He kept the wisecracks coming in his typical style. An example: when asked if it was OK to apply some homeopathic pain remedy to his arm, he replied "Yeah, but I'd be more comfortable if it was heteropathic." I mean really.
On a more serious note, he many times (without prompting) talked about his desire to work hard at getting better as quickly as possible for his girls. He repeated that the time he has missed and will continue to miss with them is the hardest part of his situation. He also expressed his gratitude several times for our visit.
Like many of you, Natalie and I spent a long time after our first visit to Jon at the hospital in complete silence. We were so shocked to see our friend in that condition that we didn’t even know what to say to to each other. After spending time with him yesterday, we had the opposite reaction. Jon's got a lot of work ahead of him, but he's back.
Keep it up, Jon!
Scott Miller
1/31/11
Hello. Today's update will be brief as it is late and the writer is exhausted.
Despite Herculean efforts by overnight guest Josh, Jon did not sleep last night and was pretty much a zombie much of the day, though I can't speak for the hours between 2 and 5, when I ducked out for a nap. Tonight we try a new sleep med and a bed designed to restrain him, which I will bet money he's already figured out how to escape from. Thanks to sister Beth for a pre-sleep massage. And we will hope for the best. Good night, all. Please sleep, Jonny.
Love, Kristin
2/1//11
Happy Tuesday!
Jon did much better today, having slept a significant portion of the night with the med+bed plan. Yea, med+bed plan! He was still sleepy in between his various therapies but it was less like he was an overstimulated zombie and more like a groggy guy who has suffered a brain injury and needs his sleep. What a relief! Thanks to Rachel for the trazodone tip.
As is his routine, Jon spent a few hours scattered throughout the day in therapy. Friends Dan and Rod came by to watch him put together a 3D model motorcycle out of 60 punched out plywood pieces using only a picture of the finished product, and instructions in Chinese. Neither Dan, Rod, nor myself wagered we could have done it. What was also impressive was his concentration and focus. According to his ADL therapist, she is using all the most difficult of tasks they have here to challenge him. Way to go, Jon!
Jon had several nice naps troughout the day, punctuated by visits from many friends (Rod Scarry, Dan-sorry-I--forgot-your-last-name, Wes Threlkeld, Sharon and Maciej Kopacz, Jackee Lemke, his parents Brian and Linda, and his sisters Bethany and Kristin. Thank you also to LeAnn Yamate for your baby holding, ginger bars, and company.
Of note, there was a multidisciplinary meeting this morning regarding Jon's current and future plans; the outcome of that meeting will be presented to us tomorrow. Jon will also be assessed tomorrow morning by a representative from CNS, the rehab facility in Bakersfield, to which he will likely go next. We will keep you updated.
Until then,
Kristin
Thanks for the continued updates, Kris.
I am not sure if I responded yet to your requests for visitors when Jon moves to the rehab facility in Bakersfield. I will plan to go at least once a week - likely a weekday when I can leave after dropping kids at school and be back in time to pick them up - so a couple of hours in the 11 am - 1pm ish range. I will also be able to go on some Sundays.
Aunt Charlotte has also generously offered to house anyone who may need it while visiting Jon in her ginormous place. We will likely take her up on that on weekends too.
Hope to see you again this weekend... – Sarah
2/2/11
Hello to all those still following along with Jon on his journey.
Jon had a pretty full and exciting day. He was alert and awake much of the day and is continuing to wow his therapists with his progress. During one exercise this morning he cracked up the aide when she reminded him to "make right turns," meaning to turn his body at full right angles when navigating around several cones placed as obstacles. "Actually, this is a left turn," Jon had said..... And in fact, he was right! I mean, um, correct. His broken right arm continues to bother him during therapy but despite that he was able to use it along with his left to repel a balloon batted at him with a metal stick--all while balancing on a squishy plastic square. He even could correctly answer Jackee that the motion was a "bunt," displaying an ability to multitask, which is often difficult or impossible after a brain injury. The fact that Jon is doing so well at this stage bodes extremely well for his recovery.
Also of note was that Jon was evaluated throughout all of his morning therapy activities by a woman from the Center for Neuro Skills in Bakersfield. (she, incidentally, placed him at a Rancho level 6) This is the rehab center 2 hours south of Fresno that has been recommended to us by Jon's doctors as the next step for him once he is able to leave the acute rehab floor at Community. My parents and I were able to spend some time asking questions of a liason from CNS as well, and will spend the day tomorrow visiting the center. If his insurance decides to cover it, CNS sounds like it will provide everything Jon needs in order to prepare himself to become independent in his life again, so we are hopeful this will happen. We may have a decision as soon as the end of this week. Keep your fingers crossed.
I should also mention that yesterday Jon's PEG tube was removed, meaning he is no longer carrying about any extraneous sites waiting to become infected. In the hospital setting, this is always a plus. The other news about his appearance is that Jackee gave him a shave and a haircut....rendering him much less Grizzly Adams and much more Jon Clague. Thank you, Jackee!! I know Becca, for one, appreciated that!
That's all for now, folks. Until tomorrow,
Kristin
2/3/11
Evening, all.
Today my parents and Aunt Charlotte and I toured the CNS facility in Bakersfield, where Jon will likely go once his insurance approves the plan for subacute rehab. The place was amazing, with 4-6 hours of structured rehab for brain injured patients a day, tailored specifically to each individual patient's abilities and needs. The philosophy of the center is that injured adults need to get back to their lives and interests, and trained staff are present to teach and encourage the patients but not to do for them, unless they absolutely can't do for themselves. The assumption is also that the brain is repairing itself, and progress is constantly assessed. Multidisciplinary meetings help all staff stay abreast of patients' programs and progress, so that programs are tailored frequently to meet their needs. If he goes there, Jon will live with one or more roommates in an apartment, with one staff supervisor who will be there overnight to manage any issues. He can receive mail and email, will have access to a computer with Wifi so he will be able to Skype with his girls, and will also have his cell phone, if we can get it working for him.
Back at the hospital, per Jackee's report, Jon had one of his best days yet! He was alert for and engaged in all of his therapy sessions, and could recall many details of each when questioned at the end of the day. He also seemed to remember today that he is in rehab for a "brain injury," details that up until today he has needed to be reminded of. So encouraging! He also has started to really laugh at all the things that usually make him laugh--great, heaving laughter that not even a wired jaw could deter. So satisfying to watch, and even better to laugh along with him.
Come by and try it! There may be only a few more days Jon is in Fresno, so if you are planning a visit, please take that into account.
All in all, a very encouraging day, with good things to come for Jon as he continues his important work and recovery.
Have a great night!
Kristin
Today my parents and Aunt Charlotte and I toured the CNS facility in Bakersfield, where Jon will likely go once his insurance approves the plan for subacute rehab. The place was amazing, with 4-6 hours of structured rehab for brain injured patients a day, tailored specifically to each individual patient's abilities and needs. The philosophy of the center is that injured adults need to get back to their lives and interests, and trained staff are present to teach and encourage the patients but not to do for them, unless they absolutely can't do for themselves. The assumption is also that the brain is repairing itself, and progress is constantly assessed. Multidisciplinary meetings help all staff stay abreast of patients' programs and progress, so that programs are tailored frequently to meet their needs. If he goes there, Jon will live with one or more roommates in an apartment, with one staff supervisor who will be there overnight to manage any issues. He can receive mail and email, will have access to a computer with Wifi so he will be able to Skype with his girls, and will also have his cell phone, if we can get it working for him.
Back at the hospital, per Jackee's report, Jon had one of his best days yet! He was alert for and engaged in all of his therapy sessions, and could recall many details of each when questioned at the end of the day. He also seemed to remember today that he is in rehab for a "brain injury," details that up until today he has needed to be reminded of. So encouraging! He also has started to really laugh at all the things that usually make him laugh--great, heaving laughter that not even a wired jaw could deter. So satisfying to watch, and even better to laugh along with him.
Come by and try it! There may be only a few more days Jon is in Fresno, so if you are planning a visit, please take that into account.
All in all, a very encouraging day, with good things to come for Jon as he continues his important work and recovery.
Have a great night!
Kristin
2/4/11
Evening, all.
Today my parents and Aunt Charlotte and I toured the CNS facility in Bakersfield, where Jon will likely go once his insurance approves the plan for subacute rehab. The place was amazing, with 4-6 hours of structured rehab for brain injured patients a day, tailored specifically to each individual patient's abilities and needs. The philosophy of the center is that injured adults need to get back to their lives and interests, and trained staff are present to teach and encourage the patients but not to do for them, unless they absolutely can't do for themselves. The assumption is also that the brain is repairing itself, and progress is constantly assessed. Multidisciplinary meetings help all staff stay abreast of patients' programs and progress, so that programs are tailored frequently to meet their needs. If he goes there, Jon will live with one or more roommates in an apartment, with one staff supervisor who will be there overnight to manage any issues. He can receive mail and email, will have access to a computer with Wifi so he will be able to Skype with his girls, and will also have his cell phone, if we can get it working for him.
Back at the hospital, per Jackee's report, Jon had one of his best days yet! He was alert for and engaged in all of his therapy sessions, and could recall many details of each when questioned at the end of the day. He also seemed to remember today that he is in rehab for a "brain injury," details that up until today he has needed to be reminded of. So encouraging! He also has started to really laugh at all the things that usually make him laugh--great, heaving laughter that not even a wired jaw could deter. So satisfying to watch, and even better to laugh along with him.
Come by and try it! There may be only a few more days Jon is in Fresno, so if you are planning a visit, please take that into account.
All in all, a very encouraging day, with good things to come for Jon as he continues his important work and recovery.
Have a great night!
Kristin
Today my parents and Aunt Charlotte and I toured the CNS facility in Bakersfield, where Jon will likely go once his insurance approves the plan for subacute rehab. The place was amazing, with 4-6 hours of structured rehab for brain injured patients a day, tailored specifically to each individual patient's abilities and needs. The philosophy of the center is that injured adults need to get back to their lives and interests, and trained staff are present to teach and encourage the patients but not to do for them, unless they absolutely can't do for themselves. The assumption is also that the brain is repairing itself, and progress is constantly assessed. Multidisciplinary meetings help all staff stay abreast of patients' programs and progress, so that programs are tailored frequently to meet their needs. If he goes there, Jon will live with one or more roommates in an apartment, with one staff supervisor who will be there overnight to manage any issues. He can receive mail and email, will have access to a computer with Wifi so he will be able to Skype with his girls, and will also have his cell phone, if we can get it working for him.
Back at the hospital, per Jackee's report, Jon had one of his best days yet! He was alert for and engaged in all of his therapy sessions, and could recall many details of each when questioned at the end of the day. He also seemed to remember today that he is in rehab for a "brain injury," details that up until today he has needed to be reminded of. So encouraging! He also has started to really laugh at all the things that usually make him laugh--great, heaving laughter that not even a wired jaw could deter. So satisfying to watch, and even better to laugh along with him.
Come by and try it! There may be only a few more days Jon is in Fresno, so if you are planning a visit, please take that into account.
All in all, a very encouraging day, with good things to come for Jon as he continues his important work and recovery.
Have a great night!
Kristin
Hang in there Jon
ReplyDeleteJon, I am sending you light and love and healing energy from Pennsylvania.
ReplyDeleteBe well,
Charlyn (Greg's oldest sister)