Writing this as I watch a new episode of "House". It helps me help the doctors in their trade. Kinda like well, no, I am not a doctor, but I did watch House last night..
Michael is once again setting the pace for his peers. He has shown pretty dang good progress over his short stint in this rehab. He has also shown a dislike for being restrained and having stuff plugged into his veins. It may take him a couple of more days to get everyone trained correctly but he is working on it.
The therapists say he had a great morning. They asked him who he was and he gave them the look and said "Sluder". He was chatty with them and was able to read the numbers off of die and some stuff like that. Later when I got there he looked great. He was looking for his "stuff" and looked at me and said he had to get to work. A little later he wanted to leave and said he wanted to go home to his place. All this we have seen before, but not for quite a while. It is definitely a step back in the right direction and came much quicker than I expected. Unless I miss my guess, I imagine soon the rehab place will have a flight risk on their hands. Not sure how we are going to handle that.
He also had a good shower and really likes to have us rub his hair. It leads to instant sleep - kinda like me. And Rosi and I have been reading to him from one of his favorite authors, Cormac McCarthy. Not easy reading, but he likes it. He smiles a lot now, too. Aggitation can happen suddenly but I believe it is just part of his healing. Lots of ups and downs.
Did I mention Jordan came over last weekend. Michael loved having him here, something about being brothers and all, I guess. It was good having him visit.
So, all in all, not bad.
Sludacris
Monday, February 28, 2011
Friday, February 25, 2011
Most Likely to Succeed
I remembered the other day that Michael was voted Most Likely to Succeed in high school (HHS Class of 2005). I would now like to nominate him for Most Likely to Kick Encephalitis in the Gonads. Who's with me? (I know, this is a less spiritual post than you usually get from me, but I am feeling feisty today....)
Thursday, February 24, 2011
Rehab (x2)
Michael has had quite a day. In the morning we got up and took a long walk followed by a shower! He is a strong lad and it takes my 200 lbs of solid six-pack muscle to handle him. (OK 200 +) He followed that up with some ice cream - yum.
The bigger news is that the doctors have finished up the treatments and tests and we are now in a new room in the rehab floor! Yea. It is a big difference in making just a short move (up one floor). The hospital is all about tests, diagnosis, poking, prodding, exploring, and medications that are not very nice. But his doctors and nurses were very nice and did get Michael much better than when he arrived here. For that we are very grateful.
The rehab folks have a different mindset in that their job is to work your butt off to make you better. The therapists have been visiting Michael but now they will have him for a minimum of 3 hours a day to work on his skills. Another yea.
I am not sure we will ever know exactly what happened to make Michael so sick. We know he had a nasty case of HSV, but me thinks there was something else that followed that made him sicker. Unfortunately, there is no definitive test or analysis that you can point at and say Aha, that's it! All I can say is that at this moment in time, he is clear of viruses and has had his blood treated and immune system boosted. There should be nothing working against him and hopefully his brain can get about the business of healing. His MRI's show a lot of inflammation so it will take some time, but I am already seeing improvement and some words are coming out loud and clear.
I am betting on him and hope he kicks some ass.
The bigger news is that the doctors have finished up the treatments and tests and we are now in a new room in the rehab floor! Yea. It is a big difference in making just a short move (up one floor). The hospital is all about tests, diagnosis, poking, prodding, exploring, and medications that are not very nice. But his doctors and nurses were very nice and did get Michael much better than when he arrived here. For that we are very grateful.
The rehab folks have a different mindset in that their job is to work your butt off to make you better. The therapists have been visiting Michael but now they will have him for a minimum of 3 hours a day to work on his skills. Another yea.
I am not sure we will ever know exactly what happened to make Michael so sick. We know he had a nasty case of HSV, but me thinks there was something else that followed that made him sicker. Unfortunately, there is no definitive test or analysis that you can point at and say Aha, that's it! All I can say is that at this moment in time, he is clear of viruses and has had his blood treated and immune system boosted. There should be nothing working against him and hopefully his brain can get about the business of healing. His MRI's show a lot of inflammation so it will take some time, but I am already seeing improvement and some words are coming out loud and clear.
I am betting on him and hope he kicks some ass.
Monday, February 21, 2011
Walking
Michael was mostly aggitated today, and he can be stubborn as you guys know. His personality shows through when he just has had enough and decides to cross his arms and say no more crap today. Raised eyebrows and all.
We tried to get him to walk and we couldn't coax him to do it, until finally in the early evening he decided to walk and we made about 5 trips around the floor. He stood up tall and had a normal walk. I told him we would be back tomorrow and he nodded OK.
We tried to get him to walk and we couldn't coax him to do it, until finally in the early evening he decided to walk and we made about 5 trips around the floor. He stood up tall and had a normal walk. I told him we would be back tomorrow and he nodded OK.
Sunday, February 20, 2011
Dont be Afraid
Michael is getting the kitchen sink thrown at him as far as treatments. The doctors here are confering with lots of other experts and are determined to get to the bottom of what has been causing Michael's sickness. It is complicated and I cannot begin to go into all the considerations, but they are continuing to dig and have a couple of new insights that has them hopeful. If they are hopeful, I am all for it. His case has been anything but conventional and we are definitely getting outside of the box. We don't care as long as it is effective.
We are seeing some definite improvements. Physically he is beginning to gain strength. We took a walk last night. His gait is normal and he is just still weak. He also has taken to playing toss with a ball around the room. He has his old Hurricanes QB arm coming back! It won't be long before he will difficult to contain in a hospital room. Good problem to have.
He is also much more alert and aware. He is nodding his head to questions and seems to know exactly what you are telling him. He lets loose with a few words and answers sometimes when you don't expect it. He also got frustrated today when he couldn't get up and let loose with a 'dammit'. His determination is high and will see him through.
Aunt Peg came in from Michigan for a few days. Michael greeted her with a smile! She said he loved the hand massages she gave him. He gets quite a bit of pampering. Rosi gives him a foot cleaning and massage every day along with a shampoo. I give the shave. He loves all of it and it relaxes him. Of course, we enjoy making him feel good as he has been put through the wringer.
We are moving into a larger apartment tomorrow and settling in for the long haul here. We want an extra room for visitors and for Michael when he gets better.
Enough for today. It was a good weekend.
Oh yea, the Dont be Afraid title is what we tell Michael in those moments when he looks overwhelmed and frightened. He had a dream the other day and was laughing and smiling during his dream, but when he woke and realized he was in a hospital he looked frightened. We asked him if he was afraid and he nodded his head yes. We held him close and told him not to be afraid, that we were there and everything is going to be OK. He likes to be held sometimes.
"When the whole world is saying its over, the Master says No, I have just begun. Don't be afraid." (youtube "Don't be Afraid", by The Cathedrals)
Thanks, Butch.
We are seeing some definite improvements. Physically he is beginning to gain strength. We took a walk last night. His gait is normal and he is just still weak. He also has taken to playing toss with a ball around the room. He has his old Hurricanes QB arm coming back! It won't be long before he will difficult to contain in a hospital room. Good problem to have.
He is also much more alert and aware. He is nodding his head to questions and seems to know exactly what you are telling him. He lets loose with a few words and answers sometimes when you don't expect it. He also got frustrated today when he couldn't get up and let loose with a 'dammit'. His determination is high and will see him through.
Aunt Peg came in from Michigan for a few days. Michael greeted her with a smile! She said he loved the hand massages she gave him. He gets quite a bit of pampering. Rosi gives him a foot cleaning and massage every day along with a shampoo. I give the shave. He loves all of it and it relaxes him. Of course, we enjoy making him feel good as he has been put through the wringer.
We are moving into a larger apartment tomorrow and settling in for the long haul here. We want an extra room for visitors and for Michael when he gets better.
Enough for today. It was a good weekend.
Oh yea, the Dont be Afraid title is what we tell Michael in those moments when he looks overwhelmed and frightened. He had a dream the other day and was laughing and smiling during his dream, but when he woke and realized he was in a hospital he looked frightened. We asked him if he was afraid and he nodded his head yes. We held him close and told him not to be afraid, that we were there and everything is going to be OK. He likes to be held sometimes.
"When the whole world is saying its over, the Master says No, I have just begun. Don't be afraid." (youtube "Don't be Afraid", by The Cathedrals)
Thanks, Butch.
Wednesday, February 16, 2011
One Less Thing
Michael just had a line taken out of his neck area that was used for the plasma transfers. It was a source of irritation and worry, so to have it gone is one less thing. It also was a source of an infection that Michael has had for a couple of days, so it had to come out. We will now be able to free his hands up much more and I know that will really help his progress.
We are at a crossroads with his treatment. He has had tests results come back with negatives for HSV and NMD, so what is left is to have another Lumbar puncture to check for stuff in his spinal fluids. If they come back in the normal range then we are set for therapy and rehab. If out of normal, then I am not sure where we go. One thing I have learned is that this is not an exact science and you take each situation as it comes.
At any rate, Michael is alert and aware. Doesn't sound like a lot, but today we had him up for an hour or two and he said his name and a couple of other words. It tells me that there is someone in there that is fighting to get out. Also, the hospital has multiple therapies coming and going, which we welcome. They actually come down from the rehab center upstairs and spend time with Michael. We are working on getting him eating and walking and other basics. It makes for busy days for Michael but he is really responding to the stimulation.
Kinda funny last night as Michael and I got into a wing chun battle with our hands. He kept pushing my hands away and I would push back. He would twirl his wrists and move my hands and I would do it back. We did that for about 30 minutes and it was fun.
We are at a crossroads with his treatment. He has had tests results come back with negatives for HSV and NMD, so what is left is to have another Lumbar puncture to check for stuff in his spinal fluids. If they come back in the normal range then we are set for therapy and rehab. If out of normal, then I am not sure where we go. One thing I have learned is that this is not an exact science and you take each situation as it comes.
At any rate, Michael is alert and aware. Doesn't sound like a lot, but today we had him up for an hour or two and he said his name and a couple of other words. It tells me that there is someone in there that is fighting to get out. Also, the hospital has multiple therapies coming and going, which we welcome. They actually come down from the rehab center upstairs and spend time with Michael. We are working on getting him eating and walking and other basics. It makes for busy days for Michael but he is really responding to the stimulation.
Kinda funny last night as Michael and I got into a wing chun battle with our hands. He kept pushing my hands away and I would push back. He would twirl his wrists and move my hands and I would do it back. We did that for about 30 minutes and it was fun.
Tuesday, February 15, 2011
Calling all Believers!
This is a post from Mom.
This morning Michael spiked a fever, probably due to fluid in his lungs. They are treating with a broad spectrum anitbiotic until they can figure out the source of the problem. More waiting.... It feels like all we do. One day blends into the next for Mike and me. Both of us wish we could take Michael's place, but we can't. We do our best to put on our upbeat 'faces' before we enter his room. We want him to see only hope and love in our eyes.
To be honest, Mike and I both feel numb and so deeply sad that its hard to describe. If there is anyone that doesn't deserve this, its Michael. Thank you to our supper club friends who sent us a care package. We do so feel your love!
Friends, please don't forget Loren and Jordan - they are hurting as well and don't have us there for support. If there is any kindness you can show them we would greatly appreciate it.
The main reason for my post is this: Michael needs a miracle. He needs God to move on his behalf. I know there are thousands who read this blog. I am asking all of you to pray for a miracle.
Thanks,
Mom
This morning Michael spiked a fever, probably due to fluid in his lungs. They are treating with a broad spectrum anitbiotic until they can figure out the source of the problem. More waiting.... It feels like all we do. One day blends into the next for Mike and me. Both of us wish we could take Michael's place, but we can't. We do our best to put on our upbeat 'faces' before we enter his room. We want him to see only hope and love in our eyes.
To be honest, Mike and I both feel numb and so deeply sad that its hard to describe. If there is anyone that doesn't deserve this, its Michael. Thank you to our supper club friends who sent us a care package. We do so feel your love!
Friends, please don't forget Loren and Jordan - they are hurting as well and don't have us there for support. If there is any kindness you can show them we would greatly appreciate it.
The main reason for my post is this: Michael needs a miracle. He needs God to move on his behalf. I know there are thousands who read this blog. I am asking all of you to pray for a miracle.
Thanks,
Mom
Saturday, February 12, 2011
Who are You?
Rosi and I got a good surprise after Michael had his third plasma treatment today. He looked at us and started spitting out words! He looked at me and scrunched his face and said "Really". I am sure my eyes got wide and he then said "No way" and "what". I said stupid and he told me back "you are stupid"! This went on for a few minutes before he got tired. It was fun.
Later he wanted to stand up and we figured out he wanted to go to the bathroom, which is definitely a good thing we need to learn.
At the end of the day he was trying so hard to get some words out and you could tell it seemed just at the tip of his tongue. He finally, after struggling, got out "Who are you?" I told him I was Fred, and his mom was Ethyl. Just kidding, but to be able to actually ask a question and use phrases I thought was huge.
I am looking forward to tomorrow and seeing Michael get better. Monday we are looking at maybe walking and eating some soft food.
We are still awaiting definitive tests results but for now these treatments seem to be effective. We'll take it.
Later he wanted to stand up and we figured out he wanted to go to the bathroom, which is definitely a good thing we need to learn.
At the end of the day he was trying so hard to get some words out and you could tell it seemed just at the tip of his tongue. He finally, after struggling, got out "Who are you?" I told him I was Fred, and his mom was Ethyl. Just kidding, but to be able to actually ask a question and use phrases I thought was huge.
I am looking forward to tomorrow and seeing Michael get better. Monday we are looking at maybe walking and eating some soft food.
We are still awaiting definitive tests results but for now these treatments seem to be effective. We'll take it.
Friday, February 11, 2011
Fluffy
Well, Mom goes out and buys the ole gift shop stuffed animal, in this case it is a dog I will call Fluffy. She lovingly sets it in Michaels hands and says look honey what I got you. Michael promptly looks at it and then methodically takes it in his left hand and deposits it to the floor! Three times in a row! A dad could not have been any prouder. Mom was crushed (not really, we both laughed). Fluffy is now sitting on top of Michaels' IV machine.
The treatments seem to be working. A friend who had not seen Michael in a few days was very encouraged by where Michael is now versus a few days ago. He is sitting up and is much more alert and aware. He has said a few words as well. Also, he is making what I call 'Michael faces'. We are going in the right direction for a change.
The speech therapists came by and spent some time with him. She fed him some apple sauce and graham crackers. Baby steps.
The treatments seem to be working. A friend who had not seen Michael in a few days was very encouraged by where Michael is now versus a few days ago. He is sitting up and is much more alert and aware. He has said a few words as well. Also, he is making what I call 'Michael faces'. We are going in the right direction for a change.
The speech therapists came by and spent some time with him. She fed him some apple sauce and graham crackers. Baby steps.
Wednesday, February 9, 2011
Technology
Michael had his first plasma transfer today. Kinda neat technology. It requires a high volume IV inserted into your jugular vein. A pump draws your blood out to a machine that has a centrifuge. The spinning of the centrifuge forces the red blood cells outward because they are heavier than the plasma. So your plasma is syphoned off and replaced with new plasma and pumped back into your vein. Or something like that. The old plasma contains the rogue antibodies that may be causing him problems. Michael did well.
This phase of treatment will last for a few days, and we hope to see some results after the 4th or 5th treatment. For now, he doesn't talk but seems to recognize us. He has the tube out of his nose and we hope he will begin eating again soon. He needs to eat and get stronger.
Today was a little better than yesterday and for now that is all that counts.
This phase of treatment will last for a few days, and we hope to see some results after the 4th or 5th treatment. For now, he doesn't talk but seems to recognize us. He has the tube out of his nose and we hope he will begin eating again soon. He needs to eat and get stronger.
Today was a little better than yesterday and for now that is all that counts.
Tuesday, February 8, 2011
Next Step
Michael is having an EEG run for tonight, so his head is in wraps. He has had a couple of suspected siezures the last couple of days and they want to monitor that.
We have talked with the Doctor and tomorrow he is set to get a couple of things accomplished. First thing in the morning they are going to give him a peg feeding tube in his stomach and remove the line they have going to the stomach thru the nose. One irritant down. They are also going to install a line in his upper chest to administer the plasma transfer, which is the next treatment.
The last couple of days have been tough in that this is a complicated case and we need to be very pragmatic about his treatments. The treatments have risks and we need to be as sure as possible about his condition before we begin some treatments. Because Michael may have had these two conditions one after the other we are in unchartered territory. We will take this day by day.
Michael is OK. He rests a lot and doesn't have a lot to say right now.
We have talked with the Doctor and tomorrow he is set to get a couple of things accomplished. First thing in the morning they are going to give him a peg feeding tube in his stomach and remove the line they have going to the stomach thru the nose. One irritant down. They are also going to install a line in his upper chest to administer the plasma transfer, which is the next treatment.
The last couple of days have been tough in that this is a complicated case and we need to be very pragmatic about his treatments. The treatments have risks and we need to be as sure as possible about his condition before we begin some treatments. Because Michael may have had these two conditions one after the other we are in unchartered territory. We will take this day by day.
Michael is OK. He rests a lot and doesn't have a lot to say right now.
Monday, February 7, 2011
Just feeling down tonight with all the waiting, tests, helplessness, incompetence, unanswered questions.... Thinking about a simpler time in our family. This picture is Michael with my now almost-7-year-old, Patrick. Just thought I'd share...
Talked to Mom tonight and they are ready to move forward with the plasma treatments, regardless of the test results. Looking for some answers, and wanting Michael to get better!!
Talked to Mom tonight and they are ready to move forward with the plasma treatments, regardless of the test results. Looking for some answers, and wanting Michael to get better!!
Sunday, February 6, 2011
Super Sunday?
The SuperBowl is today in Dallas. Doesn't mean much to me. Our family focus is on one thing and that is getting Michael better. We wouldn't be much fun at any parties anyway. Still, I hope the Packers win because the Steelers fans are about as abnoxious as they come! I make this entry because it will serve as a milestone in the future with which we can readily associate his progress.
No entries since thursday cause we haven't seen much change. Michael is receiving medication to treat possible HSV and Receptor E until the tests results come back in. The care here is excellent and he is clean and cared for.
The next step will be to have a plasma transfer beginning some time next week. This is sort of a dialysis of the blood to remove the offending antibodies. It takes place with several treatments over about a nine day period. Results of this treatment aren't final, but are generally considered to be very effective. If Michael had not had previous damage then I believe he would have had a strong chance to see a short recovery. But my fear is that the damage due to this entire process will leave a long tough road ahead. I have the strongest faith in my son to battle anything that comes his way and he will do his part, but right now he needs a break.
He hasn't really spoken anything for a few days now and when he is awake we don't get a lot of response from him. It seems we have retreated a long way in the last three weeks. This new phase is quite different from the last and his motor skills are being affected along with the speech. It seems a double whammy of the worst kind and to be honest Rose and I are quite discouraged. When are the hits going to stop?
Thank you all for checking on Michael. I wish I had better news but right now we are in a holding pattern and fear is battling hope. It seems every time we get a sliver of hope going it is dashed by events. We feel like folks that have been bitten a few times and are very wary of setting any expectations. We will deal with this one day at a time and I will keep my hopes close to myself for now.
Of course, all Michael will see are smiling faces and encouragement, which are reserved for him.
No entries since thursday cause we haven't seen much change. Michael is receiving medication to treat possible HSV and Receptor E until the tests results come back in. The care here is excellent and he is clean and cared for.
The next step will be to have a plasma transfer beginning some time next week. This is sort of a dialysis of the blood to remove the offending antibodies. It takes place with several treatments over about a nine day period. Results of this treatment aren't final, but are generally considered to be very effective. If Michael had not had previous damage then I believe he would have had a strong chance to see a short recovery. But my fear is that the damage due to this entire process will leave a long tough road ahead. I have the strongest faith in my son to battle anything that comes his way and he will do his part, but right now he needs a break.
He hasn't really spoken anything for a few days now and when he is awake we don't get a lot of response from him. It seems we have retreated a long way in the last three weeks. This new phase is quite different from the last and his motor skills are being affected along with the speech. It seems a double whammy of the worst kind and to be honest Rose and I are quite discouraged. When are the hits going to stop?
Thank you all for checking on Michael. I wish I had better news but right now we are in a holding pattern and fear is battling hope. It seems every time we get a sliver of hope going it is dashed by events. We feel like folks that have been bitten a few times and are very wary of setting any expectations. We will deal with this one day at a time and I will keep my hopes close to myself for now.
Of course, all Michael will see are smiling faces and encouragement, which are reserved for him.
Thursday, February 3, 2011
Tuesday, February 1, 2011
Complicated
Well, Rosi and I braved the ice storm in Dallas and made it to the hospital. It was mostly a quiet day. Michael slept thru.
The doctors have been quite busy with a steady array of tests. They want to confirm just exactly what the problem is, so they are rerunning pretty much every test Michael has had. The odds of Michael having two different types of E are very low, so they want to know if this is relapse, or something totally new. In the meantime, they are beginning treatments for both until he knows more. It will take about a week for us to have a more complete picture.
In the meantime he is getting nourishment and good rest.
The doctors have been quite busy with a steady array of tests. They want to confirm just exactly what the problem is, so they are rerunning pretty much every test Michael has had. The odds of Michael having two different types of E are very low, so they want to know if this is relapse, or something totally new. In the meantime, they are beginning treatments for both until he knows more. It will take about a week for us to have a more complete picture.
In the meantime he is getting nourishment and good rest.
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