Tuesday, October 25, 2005
Daniel just had his swallow test.
I guess we can't always get good news. He does have infiltration of food in his lower right lung. The way Christie explained it, that lung is the one that has the most gravity to it so it'll collect anything that goes down the wrong pipe. Unfortunately this is the lung he's had so much trouble with as far as collapse. So, they downgraded his food intake back to honey thick and pureed. He's going to be so disappointed. They'll have to keep him on this type of food for three weeks and then he can get another test.
November 3rd!
If all goes as the doctor's plan then Daniel will be headed home on Thursday, November 3rd. They're training Christie right now to deal with the different issues that might come up. She said that she transferred him herself yesterday and they are getting a good routine down. He's using his left leg a lot more. He wiggled and moved it more than I'd seen before when we got there on Saturday night. His right leg still just barely wiggles, and he said that while he's standing he still can't feel the weight on it. He says that he has to ask the therapist if his leg is all the way down. Last I heard he was up to 9 minutes of standing in PT with the machine. I only took a few photos this time. Here's a sample and a link:
Oh, and I told him I was updating the blog today and he said to tell everybody "HI!" and that he can't wait to get home :)
Oh, and I told him I was updating the blog today and he said to tell everybody "HI!" and that he can't wait to get home :)
Monday, October 24, 2005
Family Aspects
1. Recognizing the Effects of Traumatic Brain Injury.
The person with a brain injury may experience various changes that can significantly alter their lifestyle. These changes do not only affect the person with the injury but the entire family and anyone who is emotionally involved with the person who has been injured. Families most often have to come to grips with the significant cognitive, physical, personality, and emotional changes exhibited by a family member who has been injured. With these changes comes a greater responsibility in dealing with new challenges that arise due to a traumatic brain injury. The family must be able to prepare themselves in dealing with the significant emotional and physical demands over a period of time. Some of these demands include recognizing that a brain injury survivor may never be the same, taking on additional financial and household chores, and dealing with the healthcare system on a regular basis. Recognizing the affects and changes on the survivor and family members is the first step towards coping and dealing with a brain injury.
2. Recognizing that Brain Injury is long-term.
Survivors of brain injury typically experience rapid improvement in the first three to six months following injury. After this period many individuals become frustrated when they continue to deal with cognitive and behavioral symptoms. Kreutzer, J.S. and Kolakowsky-Hayner (2001) report that individuals who sustained a brain injury and adjusted well possessed the following traits:
"They accept that they will not be the same person they were before the brain injury"
"They readily acknowledge personal limitations"
"They do not get angry with themselves because they are not doing better"
"They set attainable goals and develop a pattern of success"
"They focus more on what they have and less on what other people have"
"They learn to appreciate unpaid activities such as visiting, cooking, housekeeping, gardening, and hobbies"
"They focus on building strong relationships with members of their family"
"They have supportive and accepting family members who recognize their positive features"
3. Extending the Recovery Process.
The recovery process can be extended by realizing that everyone has the ability to learn no matter how severe a brain injury. Through practice many individuals can continue to make gains and learn how to deal with daily living and work situations effectively. This along with maintaining a healthy lifestyle (i.e. maintaining a healthy diet, giving up drinking alcohol and smoking) can go a long way in helping an individual and family make adjustments towards the changes involved after a brain injury.
4. Avoid Giving Conflicting Advice.
Family members often provide advice for their loved ones as a means of helping. However, even though many individuals have good intentions, contradictory advice can make a situation more difficult to deal with. For instance, a person with brain injury may be told to take time off from work to help him recover, while another person tells him he needs to work hard in order to get back to work. Family members and health care professionals should communicate together to help reduce the chances of providing conflicting advice, and to help provide the survivor with the best possible means of returning to a well-adjusted lifestyle.
Reviewed by: Andrew Sikiric, MA
Research Assistant
Jamaica Hospital Medical Center
The person with a brain injury may experience various changes that can significantly alter their lifestyle. These changes do not only affect the person with the injury but the entire family and anyone who is emotionally involved with the person who has been injured. Families most often have to come to grips with the significant cognitive, physical, personality, and emotional changes exhibited by a family member who has been injured. With these changes comes a greater responsibility in dealing with new challenges that arise due to a traumatic brain injury. The family must be able to prepare themselves in dealing with the significant emotional and physical demands over a period of time. Some of these demands include recognizing that a brain injury survivor may never be the same, taking on additional financial and household chores, and dealing with the healthcare system on a regular basis. Recognizing the affects and changes on the survivor and family members is the first step towards coping and dealing with a brain injury.
2. Recognizing that Brain Injury is long-term.
Survivors of brain injury typically experience rapid improvement in the first three to six months following injury. After this period many individuals become frustrated when they continue to deal with cognitive and behavioral symptoms. Kreutzer, J.S. and Kolakowsky-Hayner (2001) report that individuals who sustained a brain injury and adjusted well possessed the following traits:
"They accept that they will not be the same person they were before the brain injury"
"They readily acknowledge personal limitations"
"They do not get angry with themselves because they are not doing better"
"They set attainable goals and develop a pattern of success"
"They focus more on what they have and less on what other people have"
"They learn to appreciate unpaid activities such as visiting, cooking, housekeeping, gardening, and hobbies"
"They focus on building strong relationships with members of their family"
"They have supportive and accepting family members who recognize their positive features"
3. Extending the Recovery Process.
The recovery process can be extended by realizing that everyone has the ability to learn no matter how severe a brain injury. Through practice many individuals can continue to make gains and learn how to deal with daily living and work situations effectively. This along with maintaining a healthy lifestyle (i.e. maintaining a healthy diet, giving up drinking alcohol and smoking) can go a long way in helping an individual and family make adjustments towards the changes involved after a brain injury.
4. Avoid Giving Conflicting Advice.
Family members often provide advice for their loved ones as a means of helping. However, even though many individuals have good intentions, contradictory advice can make a situation more difficult to deal with. For instance, a person with brain injury may be told to take time off from work to help him recover, while another person tells him he needs to work hard in order to get back to work. Family members and health care professionals should communicate together to help reduce the chances of providing conflicting advice, and to help provide the survivor with the best possible means of returning to a well-adjusted lifestyle.
Reviewed by: Andrew Sikiric, MA
Research Assistant
Jamaica Hospital Medical Center
Friday, October 21, 2005
Quick update
Talked to Christie yesterday, but I didn't have time to update. She said that the doctor cleared Daniel to sit all the way up in bed without the brace. He ordered x-rays so we can find out when the brace comes off for good. They took out the stomach stint completely. It's gone! This is huge :) The last I heard (from Christie) is that the doctor thinks that Daniel will eventually walk, but it could be six months or more.
They had a family meeting today with mom and she'll update me this evening. As long as we connect and I know more, I'll post before going to bed tonight. The problems with his right side are related to the brain injury. This is a good thing because stuff relating to the spinal injury are less likely to change at this point. He's using his left leg just a bit more, and he can still barely wiggle his right toe. He said that he still doesn't feel like he's putting much weight on his right side when he's doing the standing exercise. They stand him up in a machine:
It's really cool...
They had a family meeting today with mom and she'll update me this evening. As long as we connect and I know more, I'll post before going to bed tonight. The problems with his right side are related to the brain injury. This is a good thing because stuff relating to the spinal injury are less likely to change at this point. He's using his left leg just a bit more, and he can still barely wiggle his right toe. He said that he still doesn't feel like he's putting much weight on his right side when he's doing the standing exercise. They stand him up in a machine:
It's really cool...
Sunday, October 16, 2005
Assisted Standing
Yesterday was a great visit. We got there just after lunchtime and stayed until 9:30 or so. When we got there he was heading into the PT room to work on standing. He stood, assisted with the machine, for 7 minutes. There are pictures on flickr. Here's one of him enjoying just a bit of Dr. Pepper:
Friday, October 14, 2005
Moving and Grooving
Yesterday they moved him to St. Mary Corwin again. He's in room 4416. Christie was trying to get him settled in that last I heard. He's a little annoyed/agitated to have new surroundings, so she's putting up the pictures from his last room. He's doing very well with eating. The nurses are considering leaving him off the feeding tube completely. I'd love if they can do that. Christie has concerns that he's not getting enough nutrition that way, mom thinks that he get's more nutrition from food. I don't know, and I hope they make the right choice. The last I heard he had waffles, cream of wheat, and coffee for yesterday's breakfast. I'm going to try to call him in his room later today. I miss hearing his voice.
She said that he's doing great with physical therapy. He's been moving his left leg some. With the brain injury it's hard to tell what he'll be capable of in a few more months. He's getting stronger every day.
She said that he's doing great with physical therapy. He's been moving his left leg some. With the brain injury it's hard to tell what he'll be capable of in a few more months. He's getting stronger every day.
Tuesday, October 11, 2005
Good news this week...Daniel is eating!!! His swallow test went well yesterday so they gave him a cookie this afternoon...and dinner tonight. He ate lots over two and a half hours and then had a couple cups of coffee as well. I'm thrilled for him...for Christie...for Autum :) They hope he'll be done with the feeding tube within a month or two.
He's moving to Pueblo on Thursday. They're taking him back at St. Mary Corwin.
He's moving to Pueblo on Thursday. They're taking him back at St. Mary Corwin.
Friday, October 07, 2005
Dental
Daniel is doing well today. Christie says that he did really well in physical therapy. I'm not going to visit him this weekend, but mom is taking Autum to see him. I hate missing a weekend. It's good that we're all taking turns to visit him though. He says that he really appreciates us being there. Bad bad teeth abound in this boy's mouth. So, the dentist removed one tooth and recommended that an oral surgeon remove nearly all of the rest. The problem with
Thursday, October 06, 2005
Journal Entry after my return from last week's visit:
We had a "family meeting" on Thursday morning with the therapists, case worker, and his doctor. His TBI (traumatic brain injury) is severe. He's got good recall on overlearned/longterm memories. He can still tell you what kind of engine John Force has in his race car, but his short term is weak. He's having trouble with shortterm recall and sequencing.
His TBI also effects his swallow. He has pharyngeal phase-dysphasia. The only machine he's still hooked up to is the feeding tube. His swallow is severely damaged. The food slides down his throat, pools in the little pockets there, and eventually makes it's way further down. He doesn't have a cough reflex when the food goes into his windpipe. This is slightly better than three weeks ago when he just got out of ICU. The plateau period for TBI is aproximately one year from the date of the accident, so there's lots of time to help him get better in these areas. They're using an electric stim therapy on his throat to try to regain function. Their goal right now is to make it possible for him to eventually eat one small meal for pleasure each day. There is a possiblity that he'll be on the feeding tube for the rest of his life, but my research on this therapy shows that it's highly effective (here's an article about it).
He has hemiparesis on is right side. That means that that side is weak and his lower extremities are basically nonfunctional at this point due to the spinal injury. He does sometimes slightly wiggle his left toes and lift his left leg a bit. He can grasp things with his right hand but has trouble letting go. The plateau period for spinal injury is around 6 weeks after the accident. Doc says that it's unlikely that he'll regain function of his legs, but right now their goal is to make him as independent as possible in the wheel chair. They're hoping that he can be at home or close to home by christmas. There's no definite answer, and I know that my brother is one tough so'mbitch so there's no limit on what he might be able to do in time. We're preparing for the worse and all the while believing that the best will happen.
His TBI also effects his swallow. He has pharyngeal phase-dysphasia. The only machine he's still hooked up to is the feeding tube. His swallow is severely damaged. The food slides down his throat, pools in the little pockets there, and eventually makes it's way further down. He doesn't have a cough reflex when the food goes into his windpipe. This is slightly better than three weeks ago when he just got out of ICU. The plateau period for TBI is aproximately one year from the date of the accident, so there's lots of time to help him get better in these areas. They're using an electric stim therapy on his throat to try to regain function. Their goal right now is to make it possible for him to eventually eat one small meal for pleasure each day. There is a possiblity that he'll be on the feeding tube for the rest of his life, but my research on this therapy shows that it's highly effective (here's an article about it).
He has hemiparesis on is right side. That means that that side is weak and his lower extremities are basically nonfunctional at this point due to the spinal injury. He does sometimes slightly wiggle his left toes and lift his left leg a bit. He can grasp things with his right hand but has trouble letting go. The plateau period for spinal injury is around 6 weeks after the accident. Doc says that it's unlikely that he'll regain function of his legs, but right now their goal is to make him as independent as possible in the wheel chair. They're hoping that he can be at home or close to home by christmas. There's no definite answer, and I know that my brother is one tough so'mbitch so there's no limit on what he might be able to do in time. We're preparing for the worse and all the while believing that the best will happen.
I decided this morning that it's time to create a space dedicated to Daniel and his recovery. Enough family and friends ask me how he's doing that I thought a central place with all the info we have would be good. Feel free to comment and if you'd like to be able to post (either thoughts, stories, etc) let me know, and I'll add you. I'll post updates, pictures, thoughts, memories, and anything else that comes to mind of Daniel and family here. More as the day progresses!
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