| July 30, 2006 Michael did not get any pool time this weekend, the weather and a series of events prevented it. He is doing well, but is not doing anything new. We now have a ceiling mounted lift to transfer Michael from his bed to his chair. These systems cost thousands of dollars, but for $100, and a trip to Harbor Freight and Lowe's, we came up with our own. We were able to get Michael into his stander easily, and that made up for time I spent in the sweltering attic mounting the system. Received an information packet from one of the stem cell places. It looks promising, but I am still researching it. The treatment will cost $25,000 plus the cost of travelling out of the country. If the US was not so moral and righteous, we would have the treatment available here and it would only cost a $20 co- pay. I won't debate the religious side of it, everyone is entitled to their opinion, but I would do anything to have my son back. Those of you who are wondering, I do not have $25,000 in my checking account, I will have to get the money from my 401K. I don't plan on ever retiring, anyway. Had some van problems this weekend, nothing major, but we required a tow. I have roadside service through Cingular. I called them and was told that we would have to wait for 3 hours for a tow truck to arrive. We ended up paying out of pocket for a truck that arrived in about an hour. I would advise anyone out there that has Cingular roadside service to find another service. Take care, Dave July 28, 2006 Not much going on with Michael these days. He sleeps well through the night and wakes up early. He has been making some different sounds lately. Brooke said that he was making the "A" sound yesterday. Trying to find his voice, I hope. He is still standing in his stander every day. Waiting to hear back from the stem cell folks. July 23, 2006 Summer school is over and regular school begins next week. Another summer shot to hell. Using the Hoyer lift to transfer Michael from his bed to wheelchair, bath chair, or mat is a pain. It takes a lot of time, it is hard to maneuver and seems dangerous. I am in the process of putting in a ceiling mounted lift to make things a little easier. The swing that we got for Michael finally arrived. Swinging is supposed to help his balance and provide a calming effect. We will try it out tonight. No major changes due to the Ambien, yet. Happy Birthday, Brenda. Take care, Dave July 23, 2006 I talked to a neurosurgeon on Friday about Michael. We discussed hyperbaric oxygen therapy (HBOT) and stem cells. In his opinion, HBOT would have beneficial right after the drowning, but would not do much for him now. He said that stem cell therapy is the future. He estimated that in about 5 years, it would be available and somewhat perfected. He also said that having a brain injury is no way to live and that nature sometimes takes care of it with pneumonia or infections. He said he would not aggressively treat these conditions and let the patient pass away. This would give the patient what they probably want and allow the caregiver to begin the healing process. I appreciated his honesty, but I will do everything that I can to keep him alive and to get him better. I have found that neurosurgeons and neurologists are very gloomy and pessimistic. Michael had some pool time this weekend and he seemed to enjoy it. Take care, Dave July 19, 2006 It didn't happen for a reason; God does not have a plan; Michael was simply killed that day at the beach. I am realistic about life and don't have false hope about anything. It will take a miracle for him to be whole again. Watching him slowly die for the past 13 months has destroyed me; I will never heal. Science and research is the key to curing AIDS, MS, cancer, and brain injuries. It was recommended by Michael's neurologist that we check into stem cell research. I am in the process of doing just that. Unfortunately, we will have to go outside of the US to get it done, because our President,George Bush is an idiot. Today, he is going to veto a bill passed by the Senate to expand federal funding of embryonic stem cell research. He feels that it is murder . He feels it is acceptable for our troops to be murdered everyday in Iraq for, what was the reason again?, that's right, imaginary weapons of mass destruction, but stem cell research is unethical. You suck, George. I will never give up on Michael. Those of you that know us, know why I can't. July 17, 2006 Here is the Mayo Clinic report on Persistent Vegatative State, (PVS). This is Michael. When a patient is in a PVS, his or her eyes may open wide when the patient is touched, but visual pursuit is absent or very brief and not reproducible. A visual orienting reflex may occur, but, for example, placing the front page of a newspaper or optokinetic tape right before the patient and moving it sideways should not elicit persistent visual scanning, tracking, or an optokinetic nystagmus. When large objects are placed before the patient or a person suddenly and closely approaches the patient, the patient may briefly turn the eyes and suggest target focusing, but the response extinguishes quickly. The patient sometimes has a disconjugate gaze, and brief nystagmoid jerks are seen, but the eyes typically rove back and forth without fixation. However, tracking occasionally appears later without other signs of improvement. Blinking to threat may occur only rarely. Response to sound is often present and is complex, and many patients may show a startle response. Consistently looking toward the origin of sound (eg, handclap) is not compatible with the diagnosis of a PVS. The startle response may be myoclonus (early in the clinical course) or eye closure, head flexion, and a decorticate response (later in the clinical course). These responses do not require cortical feedback loops and do not imply intact hearing. A pain stimulus produces inconsistent “grimacing” or no response. More often it causes an increasing pulse rate, tachypnea, and pathologic limb flexion or extension. Facial expression may change when the patient is moved or touched. Snout (when the patient is kissed, a snout reflex may be elicited), glabella, palmomental, and corneomandibular reflexes may be elicited easily. Yawning and teeth grinding may remain as primitive brainstem reflexes. They may moan, groan, or squeal spontaneously. In extremely exceptional cases, patients may speak single words at random. Swallowing of saliva occurs, but the coordinated stages of oropharyngeal passage are impaired and lead to aspiration if challenged. When ice chips are placed inside the patient’s mouth, primitive chewing movements may be observed, and an involuntary swallowing-gag reflex may occur. It is more likely that any food placed in the patient’s mouth will be inhaled with the next breath. In some patients, a tongue depressor may cause forceful biting with the ability to lift the head up (called bulldog reflex ). Episodic screaming resembling rage has been reported but is highly unusual. The patient’s muscle tone is increased and leads to back arching. Most patients are in a decorticate position with arms flexed and legs extended. Motor response is absent or no better than pathologic flexion or extension responses. These motor responses may be muted because of overriding spasticity and early contractures. Immobility causes acrocyanosis. Tendon reflexes are difficult to elicit because of these contractures, including a Babinski sign in patients with equinovarus. The jaw reflex is brisk. Grasp reflexes are common in some patients, thumbs become buried in balled fists or may wedge between ring and middle finger. Fumbling movements may occur after the patient touches bed linen, but they are nonpurposeful. Spontaneous non-directed choreiform movements of the head, trunk, and limbs, sudden catatonic postures resembling salutes, extreme opisthotonos (arc-en-cercle), and sudden half sitting position may occur in patients in a PVS; none of these movements are responsive to neuroleptic agents, benzodiazepines, dopaminergic drugs, and electroconvulsive therapy and could persist for months. Dysautonomic features such as increased bronchial secretions, hypertensive surges, tachycardia, and tachypnea may accompany these catatonic manifestations. In patients in a PVS, circadian sleep-wake cycles are preserved but, in some patients, may be markedly diminished with the patient’s eyes primarily closed with brief episodes of opening. July 14, 2006 Michael was very tired yesterday afternoon. He fell asleep at about 5:00 PM and woke up at 8:30. He became very vocal after his nap. He received his Ambien at 9:30. He woke up at about 5:00 AM laughing. He seems to be in a good mood this morning. No school today, so Brooke will take him to the mall or a park. The weekend is upon us, so he will have some pool time. July 10, 2006 "Good Morning America" is supposed to run a segment on Ambien this morning between 7:30 and 8:00. They have re-scheduled it several times, hopefully it will show today. There is a problem with the pool at Silver Sands School, so Michael and the other kids probably won't get to use it this week. Michael has been waking up in the wee hours of the morning, laughing for awhile, then going back to sleep. I'm not sure what that is about, but at least he seems happy. One of our neighbors, 14-year-old Andrew, was burned badly in a fireworks accident. He is in a burn unit in Mobile on a ventilator. Being a diabetic does not help the situation. He is in a drug induced coma to ease the pain. Remember his family in your prayers. Take care Dave July 7, 2006 Michael has just started taking Ambien. Here's why: According to Nature magazine of New York report, three semi-comatose patients who were revived for several hours at a time by zolpidem, marketed to millions of insomniacs under the brand name Ambien. If more wide-ranging tests are successful, the drug could become the first effective treatment for 'persistent vegetative state.' British and South African doctors, the report said. The drug allows the semi-comatose patients to talk with friends and family for several hours before the effect wears off, they report in the journal NeuroRehabilitation. The patients, two of whom suffered severe head injuries in motor accidents and a third who was left brain damaged by a near-drowning incident, have been taking the pills every day for several years, with no severe side effects, Nature report said. "The effect is amazing to say the least," Ralf Clauss of the Royal Surrey County Hospital in Guildford, UK, who discovered it along with his colleague Wally Nel of the Family Practice in Pollack Park, Springs, South Africa, was quoted as saying. "They can interact, make jokes and speak on the phone." One of them even mastered catching a baseball. The treatment was a chance discovery, Clauss was quoted as saying. He recalls that one of the vegetative patients was experiencing restless movements, and that Nel was trying to calm them with the use of a sleeping pill. "Lo and behold, he woke up 15 minutes later," says Clauss. "And so now we're using a sleeping drug to wake people up in the morning," he said. Clauss theorizes that the brain processes that help to govern sleep may be the same as those that malfunction and shut the brain down as a result of trauma. The drug is still acting as a sleeping pill in these patients too, he notes: if the dose is high, the patients become conscious but sleepy. The effect seems to hinge on the GABA system, says Clauss. Many brain cells possess receptors on their surfaces that bind to a molecular messenger, or neurotransmitter, called GABA; and this binding can, amongst other things, promote sleep. Ordinarily, zolpidem boosts the binding process, helping weary insomniacs to drift off. But in severely damaged brains, perhaps this system can become oversensitive.A trauma such as a blow to the head can kill off swathes of brain cells. Perhaps it also makes many of the remaining brain cells supersensitive to GABA. This would cause them to shut down upon the slightest hint of binding, which would act as a defence mechanism to prevent the body from being over-stressed and causing further cell death. If too much of the brain shuts down in this way, the result would be a persistent vegetative state, but seems unaware of anything or anyone around them. Further Clauss wonders whether zolpidem may change the shape of super sensitized GABA receptors, making GABA less likely to shut these cells down. This could turn off the body's self-defence mechanism and allow the patient to wake. If he starts communicating and I only have a short period of time to interact with him, what will I ask him? What will I tell him? After a year, we have a lot of catching up to do. I'll let you know if my miracle happens. July 4, 2006 Busy day for Michael. Started the day by going to a park. We left when the mosquitoes attacked. Went home and put him in the stander. After standing, it was pool time. After the pool, a little range of motion. Braces and vital-stim followed. As busy as the day was, he did not fall asleep until after 10:00 PM. I'm sure that you have all heard about the guy that woke up after 19 years. He is able to speak and is regaining his strength daily. I am very happy for him and his family. His injury is different than Michael's however. This young man had a TBI while Michael has an anoxic injury. A blow to the head usually damages one part of the brain, while an anoxic injury is diffused, affecting all areas of the brain. To put it into perspective, Terri Schiavo had an anoxic injury. The outcome for this type of injury is not as good as a TBI. I have not given up and I am still waiting for my miracle. July 3, 2006 Michael has spent a lot of time in the pool recently. Brenda bought him a floating chair that has really worked out. He likes to be pushed around the pool while in the chair. I have been using the Vital-Stim on him everyday. I'm not sure if it is doing anything to help him, but I will keep trying it. He was awake at midnight last night laughing. He was in a good mood most of the day and fell asleep at 6:00 PM. |
July 2006
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