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Showing posts from July, 2017
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July 31, 2017 10:20 pm Well, we had the big meeting at the hospital today with all of the medical personnel on our team. Frankly speaking, it was a bit of a disappointment. We really didn't learn anything more than we already knew. The main points were: Josh has severe brain damage to his frontal lobes, which affects many different aspects of his brain function; including, impulsiveness, short term memory, speech, and personality. Because the injury is to his brain, there is no way to predict where Josh will be after six months or even a year. We just have to wait and see. Josh is experiencing hydrocephalus right now, which is filling his ventricles with fluid and causing his brain to swell. This likely needs to be rectified with a shunt. It's the neurosurgeon's call, but it is likely that the shunt surgery will be performed together with his cranioplasty, where he'll get his new and improved fabricated plastic skull. This skull has been ordered and we are now wai
July 30, 2017 10:00 pm It was a rough day for Josh -- and his parents. We went to church this morning and stayed all three hours. Bad idea. Josh was agitated because he felt insecure that we were gone for so long. He was relieved when we finally returned to the hospital. Due to the hydrocephalus, we believe, Josh was very disconnected today and seemed to take another step backwards. The sunken skull he has had over the last week is now completely gone, which means that his brain is all swollen again. He is almost entirely incontinent. He is lethargic and wants to sleep all day. He can barely keep his head up off of his chest when he's sitting in his wheelchair. He quickly gets caught up in some meaningless repetitive move (slapping his leg with a strap, pushing his fork into his food, hitting the same button on the iPad). And we mostly have to feed him now. These are all setbacks compared to how he was just a few days ago. We have been assured by the medical personnel that this
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July 29, 2017 11:00 pm Today was Saturday so Josh didn't have any classes or other planned activities. This presents a challenge for us as we try to keep him relatively occupied and active all day long. We did get a lot of help today from his BA, Sonam (from Nepal). She was great and did a lot to help Josh through the day. When we got to the hospital this morning, we were quite alarmed by Josh's situation. He seemed to be a lot more disconnected from the world around him than in recent days. He sat with his breakfast and pushed his eggs around his plate with his fork for about 30 minutes or so. After that, he just didn't seem like he had much energy or interest in anything. He peddled around the floor in his wheelchair for about an hour or so with Paul in tow, but he was consumed with staying as close as possible to the left side of whatever hallway we were in and kept trying to enter every room we passed. The behavior was a bit alarming. We were informed that he slept
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July 28, 2017 9:10 pm It was a busy day for Josh, but not much exciting or new happened. In the morning he had OT, a neuropsychology session, PT, and recreation time. He did a lot of writing in OT. It started with the therapist instructing Josh to write a line of Os across the page. She demonstrated then gave him the pen. He wrote an excellent "O," but then completed the word by writing "ORYGYN" (Oregon). He fell asleep halfway through the class, so the therapist and Mary wheeled him back to his room and put him to bed. He napped for 90 minutes before he went to neuropsychology. Dr. Schraa gave Josh a piece of paper and said, "Write your name." Josh wrote, "Dr. Screw." Mary was super excited because the doctor's name is "new" information; something he would have learned after the accident. She said, "Hey! He got your name!" The doctor said, "Not quite. He wrote Dr. Screw, not Dr. Schraa." She said,
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July 27, 2017 10:30 pm Dr. Makley was gone today, so we had two fill-in physicians today: Jeremy (the PA) and Dr. Spier. Jeremy was great. He sat in Josh's room with me for an hour and went over Josh's file. He said that Josh has a serious - but not severe - case of hydrocephalus. Josh has no bone flap, so it is not dangerous for him because as his brain swells, there is no bone for it to bump against. However, the hydrocephalus causes Josh to be tired and confused; it is the reason Josh has lost his ability to be continent; it contributes to the problems he has with learning, motivation, and memory; and it might also be causing visual problems. He said that when the fluid is drained, Josh will be more awake and aware. He then warned me about the effects of Josh being aware of his condition: sense of loss, anger, sadness, depression, and guilt. Jeremy also reviewed Josh's medications with me. He is taking two anti-seizure medications, some amount of Amantadine (to "
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July 26, 2017 9:30 pm Bad news. Josh's lava lamp broke today. It's only a week old, and it gave up the ghost. Things are just not made as well now days as they were in the past. Josh had another busy day today. (Tomorrow's schedule looks much less busy, so expect a short entry then.) Josh got up and had breakfast (in his PJs). He still loves ketchup. Ketchup on his hash browns, on his eggs, and he even dipped his strawberries in it. I'm okay with it though. Ketchup is basically a low-calorie vegetable that's good in vitamins A and C, so I say, "You go, Josh!" OT came at 8:00 to help Josh get dressed. He often gets his shoes on the wrong feet, but Josh can mostly dress himself now. Because it took him only 30 minutes to get dressed, the therapist worked with him for 30 on matching cards, building blocks, and drawing. Then Josh had ST. The Speech Pathologist is trying to get him to remember new information - his teacher's names, wha
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July 25, 2017 10:00 pm Today was a big day for Josh. At 8:00 this morning he had an EEG. They were checking to see if he is still having seizures. He is on two anti-seizure medications, so he should not be having them. (This picture was taken after they shined a strobe light in his eyes to see if it would cause him to have a seizure.)  I didn't get the results today. At 9:30 Josh had Speech Therapy (ST). She would read a sentence off a card. One sentence was, "I am at Craig Hospital in Englewood, Colorado." Then she would ask questions like: "What hospital are you at?" and "What state are we in?" He didn't answer any of those correctly. But if she told him we are in Englewood then showed him three written choices and asked, "Which one says Englewood," he would choose the right one. But besides the multiple choice options where he was given the answer before he was asked which of the three words was correct, he didn't get a sing
July 24, 2017 9:45 pm Josh started the day speaking to the neuropsychologist, Dr. Schraa. Everyone raves about Dr. Schraa, but I have a different opinion. He's a nice guy, but he speaks very quickly and in terms that many time I don't even understand. Every session starts out the same, "What city are you in?" Josh never knows. "What state are you in?" Again, he doesn't know. "You are in a hospital. Do you know why you are here? Did your mom tell you." Josh shakes his head. "You were in an accident and you hurt your brain." Josh looks at me for verification. I nod. Then we go to the next test. Schraa gave Josh the clock test he gave last week. He showed him a picture of a clock and said, very quickly, "Copy the clock and make it read 10 after 11." Under the clock Josh wrote: 10 + 11 = 21. Schraa repeated the instructions. Under Josh's equation, he wrote: 10 + 11 = 21. So the doctor went to the next test. Josh coun
July 23, 2017 10:00 pm One month ago today Josh had his terrible accident. The time has both dragged and sped by, if that makes any sense. Before we get into today's journal of events, we want to thank each of you for staying with us through this journey. Although you cannot physically be with us, we can see how many times the entry was read. Knowing that you are with us in Spirit and in love gives us strength throughout our day. Thank you, from the bottom of our hearts, for your lasting support. It was an up-and-down day for Josh today.  We got to the hospital at about 8:15 and were surprised to find him zipped into his bed and with mitts on his hands so he couldn't escape. Mitts were pretty common at OHSU weeks ago, but Josh hasn't really needed mitts since we got to Denver. At Craig, Josh has been assigned one-on-one care, meaning that a staff person is ALWAYS with him. This is obviously due to the severity of his injuries and the related medical and safety needs.
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July 22, 2017 9:00 pm There are no therapy sessions scheduled on Saturdays and Sundays, so today was a free day to do what Josh wanted. Consequently, we are just about worn out trying to entertain him all day. Josh is still not in a stable enough condition to leave campus, so we didn't do much that would be considered fun. We walked around campus quite a bit, both inside and outside the buildings. Paul and Josh played Foosball for about an hour and a half. It's interesting to watch Josh play. He has good problem solving skills. For example, he is able to figure out the trajectory of the ball and choose the best player to kick it. But he's slow. If the ball were rolling at full speed, he would not be able to keep up with the game.   There was an archery event Josh sort of participated in. Instead of shooting with the arrow, he took the arrow to the target and knocked the plastic bottles down. They served root beer floats at the event, so he had one of those. Two ho
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July 21, 2017 9:15 pm When I got to Josh's room this morning, I noticed they removed his IV overnight. So that's great! And Josh slept 7 hours last night! Then he got up, got dressed, ate breakfast, and went back to bed at 9:00, where he slept until his 10:00 OT appointment. It was difficult to wake him up. We almost gave up and let him sleep through his appointment. In OT today, Josh was given a demo box and parts so he could put together a duplicate metal box. He built two sides well (except the screws pointed out instead of in), then the other two sides he mixed up the long and the short ends. But he enjoyed doing it and the OT was pleased with his focused concentration on the project. The doctors were afraid that Josh is silently aspirating his food, meaning that he is aspirating but his lungs aren't strong enough to cough up the food, so at noon he had a modified barium swallow. They took a real-time x-ray while he drank and ate different things (thick liquids
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July 20, 2017 10:00 pm Craig Hospital's welcome packet included a list of unsavory behaviors common in TBI patients. One of those is "offensive language." Maybe Josh's diagnosis of "severe injury" accounts for his severe foul language today. I hope it doesn't get worse than it was today. Wow! Josh didn't sleep well last night. They gave him Trazodone to help him sleep, but it had the opposite effect. Between 8:00 pm and 8:00 am, he slept a combined total of 5 hours, on and off. So he started the day very tired. Fortunately, Josh had a short day today. He had an x-ray at 8:00 then OT helped him dress at 8:30. Josh was able to mostly dress himself. 9:00 was PT. Josh rode a stationary bike for 15 minutes. He was very interested in the other patients in the room, so sometimes he would stop peddling altogether. But here is a video from when he started the exercise, before he got distracted. After riding the bike, he went to a quiet room for
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July 19, 2017 10:20 pm Happy birthday? Josh was surprised to find out that today is his birthday. When I asked him how old he is today, he said, “I don’t know.” I said, “25! You are 25 years old today!” He looked shocked. I said, “Do you feel old?” He replied, “I didn’t until now.” THAT is a GREAT answer! Because Josh is still in such a fragile state, they have assigned him one-on-one care. That means that he is to have a BA (Behavioral Attendant - the rest of the world calls them CNAs) with him at all times. So even through the night, a person is hired to watch him sleep. Apparently, last night’s nurse didn’t watch so closely because he pulled his IV out. They had to reinsert it during the night. Josh’s birthday started at 6:45 this morning when he was taken to Swedish Medical Center for x-rays. They x-rayed his PEG tube to see how deep the infection is. Then he was wheeled into the ultrasound room. While they were doing his ultrasound, he told his BA, “This is stupid.” I
July 18, 2017 10:30 pm (Mountain Time) Josh was very confused this morning. As we were trying to clean his arms and hands off with alcohol wipes, he insisted on washing the goop off himself. He grabbed the alcohol pad and stuffed it in his mouth. He chewed it up, but we got it out before he swallowed it. Even though he has a countdown board and we've talked about his discharge date for five days now, he didn't know we were leaving the hospital. We've told him a dozen times or more that we were going to Colorado, but he didn't remember where we were going. He was shown a picture of an airplane, and he said he's never been in one. When asked if he is right-handed or left-handed, he said "left." Sometimes when the extent of the battle hits, it feels overwhelming. Bob reminded us that there is always that "groundbreaking new book" Baby Steps  by Leo M. Marvin, M.D, Ph.D. After a hectic morning of preparation and goodbyes (the hospital staff at OH
July 17, 2017  8:15 pm Dr. Z signed the necessary paperwork for us to go to Craig Hospital tomorrow!  Insurance said that once we got a doctor's signature, they would cover transportation.   YAY!  But once the paperwork was signed, insurance denied coverage.   BOO!   When Angel MedFlight (a private Air Ambulance company) heard of our plight, they called our case worker at OHSU and offered to fly us on a private Learjet 35 for a mere $75!!   YAY!  So Josh and I will be leaving OHSU at 8:00 tomorrow morning!  I am SO excited to start the next phase of this journey. Speech therapy went well this morning.  They put him on "mechanical soft food."  So for breakfast he had Cheerios, which he fed himself. After breakfast OT helped him brush his teeth.  She gave him a toothbrush with toothpaste on it, and he promptly scrubbed his hand.  Then he scrubbed his other hand.  He knew what to do with the toothbrush, but not where to do it. Dr. Karen Brasel came by and inspected