Greetings from la-la land. These last couple of weeks are very much of a blur, which I’m told is for the best. This wonderful Blog has allowed me to understand the seriousness of my situation, the solid team of professionals, family, and friends that carried me when I was in need, the power of prayer, the strength of the human spirit, and the will to live. I was discharged yesterday. I’m feeling very much like the weather; chilly (temp 97.9 this AM), cloudy, with a chance of tears at any moment. The woman I chose for my wife nearly 30 years ago has proven over and over an over yet again to have been the wisest choice any guy could ever have made :>) Daughter Julie has been at Barb’s side, with LOVE and support- Ben and Jen too! Think I’ll end this here; “there’s something in me eye; you know it happens every time”… Pray for me, as I will for you. - DOUG
Special thanks to Corey, Nila, and Sula-babe for their help with the Blog.
Tuesday, June 9, 2009
Monday, June 8, 2009
What a difference a day makes
Doug and I talked with Dr Armstrong this morning. He gave him the go ahead to be discharged. Doug needs to use the cane for walking, but no other restrictions were noted. Ben is using his car so he won't be driving right away. (Nor should he be driving yet as far as I am concerned.)
He has a follow up appointment in 1 week with his primary doctor, and a follow up with the neurologist in 1 month. Though Doug isn't yet at 100%, he is well enough to know he will get there very quickly. Then we can discuss the idea about having that hip done.
Thanks everyone for their prayers and support. I am truly blessed with a wonderful support team. Every one of you makes a difference.
Barb
He has a follow up appointment in 1 week with his primary doctor, and a follow up with the neurologist in 1 month. Though Doug isn't yet at 100%, he is well enough to know he will get there very quickly. Then we can discuss the idea about having that hip done.
Thanks everyone for their prayers and support. I am truly blessed with a wonderful support team. Every one of you makes a difference.
Barb
Saturday, June 6, 2009
Progress Continues
Doug had physical therapy twice today. His balance and strength are getting better. He still becomes restless and agitated, but is aware of it and trys to work through it or get help with medication if needed.
He called me at 6:30 AM to tell me he was doing better and that I didn't have to come in as early as I had been. When I got here he looked calm and comfortable.
His progress continues!
He called me at 6:30 AM to tell me he was doing better and that I didn't have to come in as early as I had been. When I got here he looked calm and comfortable.
His progress continues!
Friday, June 5, 2009
Aseptic Meningitis
The physicians have determined Doug has aseptic meningitis. The good thing is that most patients make complete recovery, anywhere from two weeks to 2-3 months. Doug’s recovery is coming along very well. He will have a third MRI on Monday. This should indicate that the inflammation has decreased even more.
Doug has been to physical therapy Thursday and Friday. Both occupational and physical therapy will be done on Saturday and Sunday. Everything has improved, speech, walking, eye sight and fine motor skills. The hardest part is the agitation he feels. Unfortunately, the steroids side effects can cause sleeplessness and irritation. He doesn’t realize how much progress he has made. He only sees the things he can’t do. Everyone there has been so encouraging. So many staff member have said how impressed they are with his progress. They let him know they saw him over the weekend and can’t believe how well he is doing. The speech line that the Dr Armstrong has him say is, “Purple people eaters.” On Tue or Wed it really wasn’t distinguishable; today it was loud and clear. Dr Armstrong has decided to cancel the speech evaluation; Doug can try that later on if he needs it.
The hiccups continue. They aren’t 100 % constant, but he has them so often that they interfere with his sleep, his speech and they are very tiresome and hurt. They were giving him something for them tonight; hopefully he’ll be able to get relief. His mouth/tongue still hurt from biting it during the 10 minute seizure on Sunday. His appetite isn’t increasing, but he is eating. The foods have been pretty yucky. Those meals where he had to eat a soft diet where disgusting. I see much progress and anticipate seeing more over the weekend.
Doug has been to physical therapy Thursday and Friday. Both occupational and physical therapy will be done on Saturday and Sunday. Everything has improved, speech, walking, eye sight and fine motor skills. The hardest part is the agitation he feels. Unfortunately, the steroids side effects can cause sleeplessness and irritation. He doesn’t realize how much progress he has made. He only sees the things he can’t do. Everyone there has been so encouraging. So many staff member have said how impressed they are with his progress. They let him know they saw him over the weekend and can’t believe how well he is doing. The speech line that the Dr Armstrong has him say is, “Purple people eaters.” On Tue or Wed it really wasn’t distinguishable; today it was loud and clear. Dr Armstrong has decided to cancel the speech evaluation; Doug can try that later on if he needs it.
The hiccups continue. They aren’t 100 % constant, but he has them so often that they interfere with his sleep, his speech and they are very tiresome and hurt. They were giving him something for them tonight; hopefully he’ll be able to get relief. His mouth/tongue still hurt from biting it during the 10 minute seizure on Sunday. His appetite isn’t increasing, but he is eating. The foods have been pretty yucky. Those meals where he had to eat a soft diet where disgusting. I see much progress and anticipate seeing more over the weekend.
Thursday, June 4, 2009
June 4th, Gaining Strength
Doug doesn't realize that he is getting better. At the end of yesterday, I was feeling like he was having a set back. I had Ray come with me this morning to be a second set of ears when the doctors came in today. After talking with the ICU hospital doctor and the internist and the germogolist, they seem to think he is making very good progress. His speech is better, the phyical therapy had him walking but no speech therapist has see him. I can't believe that and I just don't get why not. I will be sure to address this issue and if necessary will be cheking with my clinic's speech therapist, Ann Smith, and see if she will come in and do an evaluation.
An MRI was ordered today. His hicups were a concern, wondering if he would move too much while the test was being preformed. Well, as it turned out, he was so tired, he fell asleep in the machine and snored. The snoring jolts him awake to make him breath, hence why he wears the CPAP. The good news, the MRI showed that the inflamation is decreasing.
He started his agitation again around 4 PM, he may not be getting a good nights sleep, though he is getting better. They are ordering phyical therapy twice a day and also going to have him in occipational therapy twice a day. That should keep him busy and get him tired and hopefully sleep better. He is being weaned off the steroids. Steroids can also make him agitated.
Continue the prayers, they are a blessing - Barb
An MRI was ordered today. His hicups were a concern, wondering if he would move too much while the test was being preformed. Well, as it turned out, he was so tired, he fell asleep in the machine and snored. The snoring jolts him awake to make him breath, hence why he wears the CPAP. The good news, the MRI showed that the inflamation is decreasing.
He started his agitation again around 4 PM, he may not be getting a good nights sleep, though he is getting better. They are ordering phyical therapy twice a day and also going to have him in occipational therapy twice a day. That should keep him busy and get him tired and hopefully sleep better. He is being weaned off the steroids. Steroids can also make him agitated.
Continue the prayers, they are a blessing - Barb
Wednesday, June 3, 2009
Therapy Day!
Hi everyone. Looks like today is going to be a therapy day, for for both physical and for speech. I'm sure you've all read how exhausted he is. Doug has asked to limit visitors for the next few days. It would be best to call before coming, as he will be in and out of the room, and getting lots of rest.
The "germ-ologist" said that they have ruled out bacterial and viral menengitis. They have ruled out a number of other things also, but they have gotten no positives. They are still searching for what the cause is. While he is doing better, there is a chance still that it could come back. At this time they are going to take him off of his long list of antibiotics, and wean him off the steroids. However, there is still inflamation in his brain. He will continue to be closely monitored in case the inflamation increases.
We don't know why, but his second spinal tap only got them 1/3 of the fluid that they wanted for testing. Is there a limit on these?
"We always knew he had a big head, but this is ridiculous."
-Ben
The "germ-ologist" said that they have ruled out bacterial and viral menengitis. They have ruled out a number of other things also, but they have gotten no positives. They are still searching for what the cause is. While he is doing better, there is a chance still that it could come back. At this time they are going to take him off of his long list of antibiotics, and wean him off the steroids. However, there is still inflamation in his brain. He will continue to be closely monitored in case the inflamation increases.
We don't know why, but his second spinal tap only got them 1/3 of the fluid that they wanted for testing. Is there a limit on these?
"We always knew he had a big head, but this is ridiculous."
-Ben
Tuesday, June 2, 2009
Small steps = Strength, June 2nd
Today the all clear came and no more worry or thoughts of there being anything related to tuberculosis. So no one has to wear the masks anymore. Hugs and kisses felt terrific.
An echocardiogram was ordered on Sunday, but they just got to it today. They said they tried several times, but something else was going on. Those employee's are on call not there staffed 24 hours a day. It may be overkill, but we decided to still have it done. No word on the results, but I sure am not anticipating anything. The latest chest CT showed that the area of concern has gotten smaller and it doesn’t look to be suspicious so they aren’t ordering any other test for that. They did choose to do another lumbar puncture or spinal tap. They found some abnormal cells in the first sample. The pulmonologist felt they were abnormal infection cells, but to be certain, they wanted to do another one. I got a preliminary result, and it is ok. This information hasn’t come from the doctor, but a good source. I will sleep well knowing that.
Doug sat up in the chair for a while before the spinal tap and then again in the afternoon for quite some time. It was a relief for him to get out of bed. Even though he was moving around the entire time it was more comfortable than the bed and he seemed very tired by evening. The nurse indicated that the physicians are going to down grade his condition, but he will still be in the ICU, possibly in the same room. (No more # 4 on the hospital's screen)
His fine motor skills are getting better. Ben thinks his speech is better & he is easier to understand him. The strength in his arms is a whole lot better and even getting up with help he is doing more of it himself. He thinks I can do it, but no way, he needs two people and ones that know where the wires are. He continues to eat more and more and is regaining his strength. Thanks for all the prayers and please continue, he still has a difficult journey ahead.
An echocardiogram was ordered on Sunday, but they just got to it today. They said they tried several times, but something else was going on. Those employee's are on call not there staffed 24 hours a day. It may be overkill, but we decided to still have it done. No word on the results, but I sure am not anticipating anything. The latest chest CT showed that the area of concern has gotten smaller and it doesn’t look to be suspicious so they aren’t ordering any other test for that. They did choose to do another lumbar puncture or spinal tap. They found some abnormal cells in the first sample. The pulmonologist felt they were abnormal infection cells, but to be certain, they wanted to do another one. I got a preliminary result, and it is ok. This information hasn’t come from the doctor, but a good source. I will sleep well knowing that.
Doug sat up in the chair for a while before the spinal tap and then again in the afternoon for quite some time. It was a relief for him to get out of bed. Even though he was moving around the entire time it was more comfortable than the bed and he seemed very tired by evening. The nurse indicated that the physicians are going to down grade his condition, but he will still be in the ICU, possibly in the same room. (No more # 4 on the hospital's screen)
His fine motor skills are getting better. Ben thinks his speech is better & he is easier to understand him. The strength in his arms is a whole lot better and even getting up with help he is doing more of it himself. He thinks I can do it, but no way, he needs two people and ones that know where the wires are. He continues to eat more and more and is regaining his strength. Thanks for all the prayers and please continue, he still has a difficult journey ahead.
Monday, June 1, 2009
The Road to Recovery!
I just got home from visiting my dad today, and he just looked good!!! I struggled to understand him sometimes, but if you are able to get one or two words in his sentence you can really feel a sense of communication! He's smiling and even saying a few jokes, it felt good! Joan took this picture of him hooked up to the EEG and we joked saying a big M would look perfect on that maroon hat of his!! I left his room today setting the channel to the Yankees and Cardinals baseball game. He even reminded my mom to pay the bills!! I can't wait to see continued improvements with his vision, speech and fine motor skills!
Love, Jules
June 1st PM
Well it sure feels like a beautiful day. The phone call from Dr Armstrong telling me that Doug was up and talking to him. WHAT? I couldn't believe it. I was excited to see for myself. He certainly was, sitting up and talking. Ok, the speech is very difficult to understand, but the humor, wit and everthing that's Doug is still there.
The electrodes on his head are back on. They want to continue to monitor for any seizures. His temp is holding around 99 degrees with medicine and a cooling pad. The Eye Doctor checked behind the retna and there doesn't appear to be a problem from TB. However there is a problem with the two eyes focusing together. So the problem is not his eyes it's his brain. It isn't conclusive that he DOES NOT have TB, but everything continues to point to a viral infection. They removed the feeding tube after the speech pathologist did a swallow study and found that it is working fine.
Doug is very weak, but he did eat some lunch and supper. He seemed to be exhausted after eating supper and wanted to relax/sleep. He insisted on wearing the CPap. I'm not all the familar with it but got it on him. His fine motor skills are slightly off and it's difficult to see what he wants to do and have to take serveral trys to get it done.
Recovery is moving forward.
The electrodes on his head are back on. They want to continue to monitor for any seizures. His temp is holding around 99 degrees with medicine and a cooling pad. The Eye Doctor checked behind the retna and there doesn't appear to be a problem from TB. However there is a problem with the two eyes focusing together. So the problem is not his eyes it's his brain. It isn't conclusive that he DOES NOT have TB, but everything continues to point to a viral infection. They removed the feeding tube after the speech pathologist did a swallow study and found that it is working fine.
Doug is very weak, but he did eat some lunch and supper. He seemed to be exhausted after eating supper and wanted to relax/sleep. He insisted on wearing the CPap. I'm not all the familar with it but got it on him. His fine motor skills are slightly off and it's difficult to see what he wants to do and have to take serveral trys to get it done.
Recovery is moving forward.
Wonderful News!
This morning I am told that my dad's fever dropped! (that in itself is wonderful) He is also coherent and talking! The speech is slurred, but he's back with us completely again! The eye doctor came in to check out his eyes and he's asking for his glasses! My mom was headed down there now to see him! Thought I would share the wonderful news with all of you. Thanks for all the prayers, and keep them coming!
Love, Jules
Love, Jules
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