It is NOT packing itself. Where is Harry Potter's friend Dobby when you need him??
Saturday, August 14, 2010
Friday, August 13, 2010
Thursday, August 12, 2010
Wednesday, August 11, 2010
Now some about me
After not working for 3 1/2 years and having no medical coverage I am finally employed and have full benefits again. I took advantage of them immediately and had a deep cleaning on my teeth (remember to get the Explanation of Benefits for reimbursement) and schedule a physical with my new doctor. Well, last week I had my physical and I did a 12 hour fast for blood work so I could get my cholesterol levels and qualify for reduced medical costs next year.
The doctor also requested a series of STD tests (single, sexually active gay male or MSM). HIV(-) still so that was expected and great news. I do not have hepatitis so I am getting vaccinated for A, I have antibodies for B due to an earlier infection. My cholesterol and all blood components came back in the correct ranges. I have a very high platelet count which would make me a good platelet donor but due to the MSM restrictions and now the Hep B, I am denied.
The bad news. I have syphilis, the titer test returned a 1:16 ratio which means that I’ve had it for some time. So I began penicillin injections in my hips, 3 big a$$ shots, once per week for three weeks. OUCH! Actually it didn’t hurt, it was just quite uncomfortable. The liquid penicillin is a large dose and it is a thick molasses type texture so it enters the body slowly and unpleasantly.
Additionally, due to the probable length of infection I needed to have a lumber puncture (LP) to test if the infection has spread to the brain. I went in for the LP yesterday morning and after four attempts and always a “dry tap“ which is a failure to successfully acquire Cerebral Spinal Fluid (CSF). I went through a very unpleasant (again not painful but sufficiently uncomfortable) procedure that left me nauseous, nauseous and even more nauseous and with a case of the cold sweats so bad I soaked my shirt and the exam table covers and pillow where my head was resting for nothing.
The result is that I am going to x-ray on Friday and having a radiologist perform a fluoroscopy guided-LP. Yippee!! I am so looking forward to this ☹ I continue to hope that there is no detected syphilis because if there is the damage is irreversible and I will be on home IV antibiotics for two weeks followed by another LP in 6 months with this process repeated until the CSF returns cleared of infection.
Positive thoughts! Positive thoughts! Positive thoughts! Good thing I got medical coverage back when I did, this could be so much worse if my brain were already turning to Swiss cheese. Reminds me of a TV show episode where a man had syphilis that the test found but the insurance company hid the results so he didn’t get treatment. The infection spread to his brain and he became violent as his brain melted. The lawyers provide the insurance company was liable for his actions and him impending death. Maybe I’ll remember what show that was and update this with it. Still, I clearly had the infection detected much earlier than that.
The doctor also requested a series of STD tests (single, sexually active gay male or MSM). HIV(-) still so that was expected and great news. I do not have hepatitis so I am getting vaccinated for A, I have antibodies for B due to an earlier infection. My cholesterol and all blood components came back in the correct ranges. I have a very high platelet count which would make me a good platelet donor but due to the MSM restrictions and now the Hep B, I am denied.
The bad news. I have syphilis, the titer test returned a 1:16 ratio which means that I’ve had it for some time. So I began penicillin injections in my hips, 3 big a$$ shots, once per week for three weeks. OUCH! Actually it didn’t hurt, it was just quite uncomfortable. The liquid penicillin is a large dose and it is a thick molasses type texture so it enters the body slowly and unpleasantly.
Additionally, due to the probable length of infection I needed to have a lumber puncture (LP) to test if the infection has spread to the brain. I went in for the LP yesterday morning and after four attempts and always a “dry tap“ which is a failure to successfully acquire Cerebral Spinal Fluid (CSF). I went through a very unpleasant (again not painful but sufficiently uncomfortable) procedure that left me nauseous, nauseous and even more nauseous and with a case of the cold sweats so bad I soaked my shirt and the exam table covers and pillow where my head was resting for nothing.
The result is that I am going to x-ray on Friday and having a radiologist perform a fluoroscopy guided-LP. Yippee!! I am so looking forward to this ☹ I continue to hope that there is no detected syphilis because if there is the damage is irreversible and I will be on home IV antibiotics for two weeks followed by another LP in 6 months with this process repeated until the CSF returns cleared of infection.
Positive thoughts! Positive thoughts! Positive thoughts! Good thing I got medical coverage back when I did, this could be so much worse if my brain were already turning to Swiss cheese. Reminds me of a TV show episode where a man had syphilis that the test found but the insurance company hid the results so he didn’t get treatment. The infection spread to his brain and he became violent as his brain melted. The lawyers provide the insurance company was liable for his actions and him impending death. Maybe I’ll remember what show that was and update this with it. Still, I clearly had the infection detected much earlier than that.
Now some about me
After not working for 3 1/2 years and having no medical coverage I am finally employed and have full benefits again. I took advantage of them immediately and had a deep cleaning on my teeth (remember to get the Explanation of Benefits for reimbursement) and schedule a physical with my new doctor. Well, last week I had my physical and I did a 12 hour fast for blood work so I could get my cholesterol levels and qualify for reduced medical costs next year.
The doctor also requested a series of STD tests (single, sexually active gay male or MSM). HIV(-) still so that was expected and great news. I do not have hepatitis so I am getting vaccinated for A, I have antibodies for B due to an earlier infection. My cholesterol and all blood components came back in the correct ranges. I have a very high platelet count which would make me a good platelet donor but due to the MSM restrictions and now the Hep B, I am denied.
The bad news. I have syphilis, the titer test returned a 1:16 ratio which means that I’ve had it for some time. So I began penicillin injections in my hips, 3 big a$$ shots, once per week for three weeks. OUCH! Actually it didn’t hurt, it was just quite uncomfortable. The liquid penicillin is a large dose and it is a thick molasses type texture so it enters the body slowly and unpleasantly.
Additionally, due to the probable length of infection I needed to have a lumber puncture (LP) to test if the infection has spread to the brain. I went in for the LP yesterday morning and after four attempts and always a “dry tap“ which is a failure to successfully acquire Cerebral Spinal Fluid (CSF). I went through a very unpleasant (again not painful but sufficiently uncomfortable) procedure that left me nauseous, nauseous and even more nauseous and with a case of the cold sweats so bad I soaked my shirt and the exam table covers and pillow where my head was resting for nothing.
The result is that I am going to x-ray on Friday and having a radiologist perform a fluoroscopy guided-LP. Yippee!! I am so looking forward to this ☹ I continue to hope that there is no detected syphilis because if there is the damage is irreversible and I will be on home IV antibiotics for two weeks followed by another LP in 6 months with this process repeated until the CSF returns cleared of infection.
Positive thoughts! Positive thoughts! Positive thoughts! Good thing I got medical coverage back when I did, this could be so much worse if my brain were already turning to Swiss cheese. Reminds me of a TV show episode where a man had syphilis that the test found but the insurance company hid the results so he didn’t get treatment. The infection spread to his brain and he became violent as his brain melted. The lawyers provide the insurance company was liable for his actions and him impending death. Maybe I’ll remember what show that was and update this with it. Still, I clearly had the infection detected much earlier than that.
The doctor also requested a series of STD tests (single, sexually active gay male or MSM). HIV(-) still so that was expected and great news. I do not have hepatitis so I am getting vaccinated for A, I have antibodies for B due to an earlier infection. My cholesterol and all blood components came back in the correct ranges. I have a very high platelet count which would make me a good platelet donor but due to the MSM restrictions and now the Hep B, I am denied.
The bad news. I have syphilis, the titer test returned a 1:16 ratio which means that I’ve had it for some time. So I began penicillin injections in my hips, 3 big a$$ shots, once per week for three weeks. OUCH! Actually it didn’t hurt, it was just quite uncomfortable. The liquid penicillin is a large dose and it is a thick molasses type texture so it enters the body slowly and unpleasantly.
Additionally, due to the probable length of infection I needed to have a lumber puncture (LP) to test if the infection has spread to the brain. I went in for the LP yesterday morning and after four attempts and always a “dry tap“ which is a failure to successfully acquire Cerebral Spinal Fluid (CSF). I went through a very unpleasant (again not painful but sufficiently uncomfortable) procedure that left me nauseous, nauseous and even more nauseous and with a case of the cold sweats so bad I soaked my shirt and the exam table covers and pillow where my head was resting for nothing.
The result is that I am going to x-ray on Friday and having a radiologist perform a fluoroscopy guided-LP. Yippee!! I am so looking forward to this ☹ I continue to hope that there is no detected syphilis because if there is the damage is irreversible and I will be on home IV antibiotics for two weeks followed by another LP in 6 months with this process repeated until the CSF returns cleared of infection.
Positive thoughts! Positive thoughts! Positive thoughts! Good thing I got medical coverage back when I did, this could be so much worse if my brain were already turning to Swiss cheese. Reminds me of a TV show episode where a man had syphilis that the test found but the insurance company hid the results so he didn’t get treatment. The infection spread to his brain and he became violent as his brain melted. The lawyers provide the insurance company was liable for his actions and him impending death. Maybe I’ll remember what show that was and update this with it. Still, I clearly had the infection detected much earlier than that.
Some updates on my brother's ER-ICU-hospital stay
A note about what follows: my adopted brother Jason is current 39 years old, 5’6“tall, 260# (morbidly obese) and has the intellectual development of a 6 year old. He has more conditions (isms) then you can believe including a very uncommon and poorly understood one: Prader-Willi Syndrome (hunger satiation mechanism doesn’t work, so they eat everything they see).
Jason came to our family when he was two years old. Due to being formula feed that entire time, his body had not grown and his head was the same size as his body. He had never turned over (neck muscles were not developed sufficiently to move his head), crawled or started to walk. He was expected to live less than a year the day we brought him home from the hospital. Needless to say, LOTS of work, lots of crying and lots of complaining later Jason is still here and dealing with the ramifications of that pre-natal situation.
Everyone wants to care for Jason because he is like a 6 year old until he gets angry - clearly the hospital and California law are going to be an ideal place for him to be lazy and (to borrow from Sordid Lives) not participate in his recovery.
9-August
Progress is slow - the nurses are coddling him way too much and doing everything for him so his progressed is slowed. The attending is considering moving him to a physical therapy ward where the nursing staff is used to patients complaining about the things they can and should do for themselves. This would likely be a very good thing since Jason has the nursing staff wrapped around his little finger.
6-August
Jason got out of ICU this afternoon! I talked to him the A.M. He was eating breakfast, coffee, oatmeal, eggs, and toast. The toast was a surprise. He sounded much stronger. He has dropped about 10#. So things are looking up. Thanks for the cards.
5-August
I stopped by and saw Jason this morning. The pulmonologist was also there and said that he's still got some fluid in his left lower lung. Jason needs to do his breathing exercises and sit up. Both of those happened while I was there and his nurse was made aware of how Jason's version of reality may be a wee bit different from others. He got a card from two brothersq while I was there and was tickled pink.
They're thinking of moving him out of the ICU tomorrow. He's still on liquid feeds and is likely to remain so. Mom, I forgot to get his weight...
4-August
Today's talk with the M.D.--The CT scan didn’t show any infection, but there was fluid in the left lung. They drained that off today so he should be able to breathe better and with any luck the white count will come back down. The doc did say that Jason has charmed the nurses into not getting him up, so the doc had them get him up in a chair while he was there. I called later and talked to his nurse. I have been telling the nurses since day one that Jason was not going to move unless made to. The nurse said what a stressful day he had had and he was tired. Yes, that he was a charming patient and SO good. She was upset with the doc for making her get Jason up. I told her that Jason could not be given any options-that he was to be told he was going to get up NOW and walk. The whole time I was talking she was making cooing noises and saying how sweet he was. I probably didn’t get anywhere with her. I ended up saying that when Jason does get up to praise him and tell him she is going to let Mom and Catherine know how good he was and that the last thing Jason wanted was for Mom and Catherine to get a bad report. So (sister)when you see him tomorrow, maybe you can take him for a walk. Try to remember to have him ask his nurse how much he weighs (as they cannot tell me). I also recommended that physical therapy work with him. She asked if Jason was able to walk alone and I assured her that he could. So he is in ICU for at least one more day, maybe more. A dilated esophagus is not good It probably can only handle liquids.
3-August
I just talked with the MD. The swallow studies were good. He has a huge esophagus. The liquid went into his stomach and the stomach emptied. So he is going to start on sips of clear liquids. He has an elevated white count, but no temp. There will be a CT scan of the abdomen and chest tonight. He will stay in ICU until the cause of the white count is discovered. I talked to him on the phone today. It was a poor connection and he was talking very low and is hoarse, so it was not much of a conversation. He did say he loves (his nephew) and that Superman is his favorite so he is doing well as far as the breathing is going.
2-August
We went and visited Jason on Saturday (Terri and I). He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
2-August
From a brother: We went and visited Jason on Saturday. He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
1-August
From Mom: Things are looking up. Tomorrow the plan is to remove the vent! Tuesday. If the vent comes off, he will have swallowing studies to see if he can take some liquids by mouth. The stomach tube will come out after the studies. The wound had to be left open, so today the surgeon closed it with steri-strips and the wound V.A.C. (Vacuum Assisted Closure) can come off Tuesday if it looks like the strips are holding. The Foley catheter will come out and he can start getting up in a chair and will be moved out of ICU. We had a long talk with the surgeon today. The amount of feeding he is getting by the J tube has been increased and he is tolerating that. Physical Therapist started working with him two days ago.
29-July
From my sister: Just saw Jason again...he's still being weaned and is doing okay (not advancing in leaps and bounds but progressing). His wound is seeping less so that's a very good sign. His nurse told me Catherine brought by housemates today and she left a big bag of comics. I brought him some comics and some music but he was pretty out of it when I was there. At any rate, not too much to report though he is doing better.
27-July
From my sister: He's doing okay and they say he's progressing (more time off the vent). The surgeon is supposed to change his bandage tomorrow and he's starting to take some food in the J-tube. That said, he'll be in the hospital for a while longer. I'll be back tomorrow or on Thursday with some comics and some John Denver to entertain him.
26-July
Calling in the big guns, my sister is a genetics counselor with Genezyme called a clinical geneticist (expert on Prader-Willi at UCSF) that she knows to consult with the attending. Jason has a list of isms as long as your arm due to his birth mother’s drug addiction during pregnancy.
25-July-2010
Long story. Friday at day care he started having severe chest pain and shortness of breath. Went to ER by ambulance where he went in a respiratory arrest. Was put on the vent. X-ray showed a lump on food in the esophagus. The gastroenterologist was called in and did an endoscopy. The mass was so firm that he could not get the scope down. The cardiothoracic surgeon was called and he said wait till A.M. when he would see him and decide what to do. The surgeon called me and talked for about 10 minutes explaining what he wanted to do. They took Jason into surgery at 11;00 A.M. He got back to ICU about 6 P.M. The Dr. then called me back and said that he had used a large ridged scope and sucked out the food. (carrots, and ground meat.) Said that this had been there for some time. He could not get it all out so he called in a general surgeon and she opened up his abdomen and his stomach so they could stick their finger up to the obstruction and get the rest of it out. The food went from his neck to his stomach! A jejunostomy (feeding tube) was placed. He was afraid to go to a gastro tube for fear of aspiration. Then the pulmonologist did a bronchoscopy to see if any food was in his lungs. There was no food, but very red and inflamed lungs from aspiration. So he is still on the vent. Dad and I saw him about 9 P.M. Last night (Sat.) and he was knocked out-no response at all. This A.M. the med. had been lightened up and when we got there he knew who we were and could shake his head. While we were there, the surgeon came in and talked to us again for about 10 min. The pulmonarypulmonologist came in and said they were going to turn off the sedation and try to turn the vent down some to see how well he did. It had just been turned down when we left so don’t know how that went. For now and who knows how long, he will not be allowed to have anything by mouth.There will be swallowing studies at a later date to see if he can tolerate liquids. Can you see Jason going for months without putting something in his mouth? He has a long way to go and a lot can happen. He probably will not be able to go back to his house. I will keep you posted and will send an address for the hospital so you all can send cards. Ma.
P.S. I just talked to Jason’s (my foster brother) nurse. He did well being weened of the vent. For 3 hrs. but his breathing was too rapid at the end of the time so he is back on and will be tried off again this P.M. So keep your fingers crossed that he can come off tomorrow. And if they can get the tube out of his nose tomorrow he will feel much better.
Some updates on my brother's ER-ICU-hospital stay
A note about what follows: my adopted brother Jason is current 39 years old, 5’6“tall, 260# (morbidly obese) and has the intellectual development of a 6 year old. He has more conditions (isms) then you can believe including a very uncommon and poorly understood one: Prader-Willi Syndrome (hunger satiation mechanism doesn’t work, so they eat everything they see).
Jason came to our family when he was two years old. Due to being formula feed that entire time, his body had not grown and his head was the same size as his body. He had never turned over (neck muscles were not developed sufficiently to move his head), crawled or started to walk. He was expected to live less than a year the day we brought him home from the hospital. Needless to say, LOTS of work, lots of crying and lots of complaining later Jason is still here and dealing with the ramifications of that pre-natal situation.
Everyone wants to care for Jason because he is like a 6 year old until he gets angry - clearly the hospital and California law are going to be an ideal place for him to be lazy and (to borrow from Sordid Lives) not participate in his recovery.
9-August
Progress is slow - the nurses are coddling him way too much and doing everything for him so his progressed is slowed. The attending is considering moving him to a physical therapy ward where the nursing staff is used to patients complaining about the things they can and should do for themselves. This would likely be a very good thing since Jason has the nursing staff wrapped around his little finger.
6-August
Jason got out of ICU this afternoon! I talked to him the A.M. He was eating breakfast, coffee, oatmeal, eggs, and toast. The toast was a surprise. He sounded much stronger. He has dropped about 10#. So things are looking up. Thanks for the cards.
5-August
I stopped by and saw Jason this morning. The pulmonologist was also there and said that he's still got some fluid in his left lower lung. Jason needs to do his breathing exercises and sit up. Both of those happened while I was there and his nurse was made aware of how Jason's version of reality may be a wee bit different from others. He got a card from two brothers while I was there and was tickled pink.
They're thinking of moving him out of the ICU tomorrow. He's still on liquid feeds and is likely to remain so. Mom, I forgot to get his weight...
4-August
Today's talk with the M.D.--The CT scan didn’t show any infection, but there was fluid in the left lung. They drained that off today so he should be able to breathe better and with any luck the white count will come back down. The doc did say that Jason has charmed the nurses into not getting him up, so the doc had them get him up in a chair while he was there. I called later and talked to his nurse. I have been telling the nurses since day one that Jason was not going to move unless made to. The nurse said what a stressful day he had had and he was tired. Yes, that he was a charming patient and SO good. She was upset with the doc for making her get Jason up. I told her that Jason could not be given any options-that he was to be told he was going to get up NOW and walk. The whole time I was talking she was making cooing noises and saying how sweet he was. I probably didn’t get anywhere with her. I ended up saying that when Jason does get up to praise him and tell him she is going to let Mom and Catherine know how good he was and that the last thing Jason wanted was for Mom and Catherine to get a bad report. So (sister)when you see him tomorrow, maybe you can take him for a walk. Try to remember to have him ask his nurse how much he weighs (as they cannot tell me). I also recommended that physical therapy work with him. She asked if Jason was able to walk alone and I assured her that he could. So he is in ICU for at least one more day, maybe more. A dilated esophagus is not good It probably can only handle liquids.
3-August
I just talked with the MD. The swallow studies were good. He has a huge esophagus. The liquid went into his stomach and the stomach emptied. So he is going to start on sips of clear liquids. He has an elevated white count, but no temp. There will be a CT scan of the abdomen and chest tonight. He will stay in ICU until the cause of the white count is discovered. I talked to him on the phone today. It was a poor connection and he was talking very low and is hoarse, so it was not much of a conversation. He did say he loves (his nephew) and that Superman is his favorite so he is doing well as far as the breathing is going.
2-August
We went and visited Jason on Saturday (Terri and I). He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
2-August
From a brother: We went and visited Jason on Saturday. He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
1-August
From Mom: Things are looking up. Tomorrow the plan is to remove the vent! Tuesday. If the vent comes off, he will have swallowing studies to see if he can take some liquids by mouth. The stomach tube will come out after the studies. The wound had to be left open, so today the surgeon closed it with steri-strips and the wound V.A.C. (Vacuum Assisted Closure) can come off Tuesday if it looks like the strips are holding. The Foley catheter will come out and he can start getting up in a chair and will be moved out of ICU. We had a long talk with the surgeon today. The amount of feeding he is getting by the J tube has been increased and he is tolerating that. Physical Therapist started working with him two days ago.
29-July
From my sister: Just saw Jason again...he's still being weaned and is doing okay (not advancing in leaps and bounds but progressing). His wound is seeping less so that's a very good sign. His nurse told me Catherine brought by housemates today and she left a big bag of comics. I brought him some comics and some music but he was pretty out of it when I was there. At any rate, not too much to report though he is doing better.
27-July
From my sister: He's doing okay and they say he's progressing (more time off the vent). The surgeon is supposed to change his bandage tomorrow and he's starting to take some food in the J-tube. That said, he'll be in the hospital for a while longer. I'll be back tomorrow or on Thursday with some comics and some John Denver to entertain him.
26-July
Calling in the big guns, my sister is a genetics counselor with Genezyme called a clinical geneticist (expert on Prader-Willi at UCSF) that she knows to consult with the attending. Jason has a list of isms as long as your arm due to his birth mother’s drug addiction during pregnancy.
25-July-2010
Long story. Friday at day care he started having severe chest pain and shortness of breath. Went to ER by ambulance where he went in a respiratory arrest. Was put on the vent. X-ray showed a lump on food in the esophagus. The gastroenterologist was called in and did an endoscopy. The mass was so firm that he could not get the scope down. The cardiothoracic surgeon was called and he said wait till A.M. when he would see him and decide what to do. The surgeon called me and talked for about 10 minutes explaining what he wanted to do. They took Jason into surgery at 11;00 A.M. He got back to ICU about 6 P.M. The Dr. then called me back and said that he had used a large ridged scope and sucked out the food. (carrots, and ground meat.) Said that this had been there for some time. He could not get it all out so he called in a general surgeon and she opened up his abdomen and his stomach so they could stick their finger up to the obstruction and get the rest of it out. The food went from his neck to his stomach! A jejunostomy (feeding tube) was placed. He was afraid to go to a gastro tube for fear of aspiration. Then the pulmonologist did a bronchoscopy to see if any food was in his lungs. There was no food, but very red and inflamed lungs from aspiration. So he is still on the vent. Dad and I saw him about 9 P.M. Last night (Sat.) and he was knocked out-no response at all. This A.M. the med. had been lightened up and when we got there he knew who we were and could shake his head. While we were there, the surgeon came in and talked to us again for about 10 min. The pulmonarypulmonologist came in and said they were going to turn off the sedation and try to turn the vent down some to see how well he did. It had just been turned down when we left so don’t know how that went. For now and who knows how long, he will not be allowed to have anything by mouth.There will be swallowing studies at a later date to see if he can tolerate liquids. Can you see Jason going for months without putting something in his mouth? He has a long way to go and a lot can happen. He probably will not be able to go back to his house. I will keep you posted and will send an address for the hospital so you all can send cards. Ma.
P.S. I just talked to Jason’s (my foster brother) nurse. He did well being weened of the vent. For 3 hrs. but his breathing was too rapid at the end of the time so he is back on and will be tried off again this P.M. So keep your fingers crossed that he can come off tomorrow. And if they can get the tube out of his nose tomorrow he will feel much better.
Jason came to our family when he was two years old. Due to being formula feed that entire time, his body had not grown and his head was the same size as his body. He had never turned over (neck muscles were not developed sufficiently to move his head), crawled or started to walk. He was expected to live less than a year the day we brought him home from the hospital. Needless to say, LOTS of work, lots of crying and lots of complaining later Jason is still here and dealing with the ramifications of that pre-natal situation.
Everyone wants to care for Jason because he is like a 6 year old until he gets angry - clearly the hospital and California law are going to be an ideal place for him to be lazy and (to borrow from Sordid Lives) not participate in his recovery.
9-August
Progress is slow - the nurses are coddling him way too much and doing everything for him so his progressed is slowed. The attending is considering moving him to a physical therapy ward where the nursing staff is used to patients complaining about the things they can and should do for themselves. This would likely be a very good thing since Jason has the nursing staff wrapped around his little finger.
6-August
Jason got out of ICU this afternoon! I talked to him the A.M. He was eating breakfast, coffee, oatmeal, eggs, and toast. The toast was a surprise. He sounded much stronger. He has dropped about 10#. So things are looking up. Thanks for the cards.
5-August
I stopped by and saw Jason this morning. The pulmonologist was also there and said that he's still got some fluid in his left lower lung. Jason needs to do his breathing exercises and sit up. Both of those happened while I was there and his nurse was made aware of how Jason's version of reality may be a wee bit different from others. He got a card from two brothers while I was there and was tickled pink.
They're thinking of moving him out of the ICU tomorrow. He's still on liquid feeds and is likely to remain so. Mom, I forgot to get his weight...
4-August
Today's talk with the M.D.--The CT scan didn’t show any infection, but there was fluid in the left lung. They drained that off today so he should be able to breathe better and with any luck the white count will come back down. The doc did say that Jason has charmed the nurses into not getting him up, so the doc had them get him up in a chair while he was there. I called later and talked to his nurse. I have been telling the nurses since day one that Jason was not going to move unless made to. The nurse said what a stressful day he had had and he was tired. Yes, that he was a charming patient and SO good. She was upset with the doc for making her get Jason up. I told her that Jason could not be given any options-that he was to be told he was going to get up NOW and walk. The whole time I was talking she was making cooing noises and saying how sweet he was. I probably didn’t get anywhere with her. I ended up saying that when Jason does get up to praise him and tell him she is going to let Mom and Catherine know how good he was and that the last thing Jason wanted was for Mom and Catherine to get a bad report. So (sister)when you see him tomorrow, maybe you can take him for a walk. Try to remember to have him ask his nurse how much he weighs (as they cannot tell me). I also recommended that physical therapy work with him. She asked if Jason was able to walk alone and I assured her that he could. So he is in ICU for at least one more day, maybe more. A dilated esophagus is not good It probably can only handle liquids.
3-August
I just talked with the MD. The swallow studies were good. He has a huge esophagus. The liquid went into his stomach and the stomach emptied. So he is going to start on sips of clear liquids. He has an elevated white count, but no temp. There will be a CT scan of the abdomen and chest tonight. He will stay in ICU until the cause of the white count is discovered. I talked to him on the phone today. It was a poor connection and he was talking very low and is hoarse, so it was not much of a conversation. He did say he loves (his nephew) and that Superman is his favorite so he is doing well as far as the breathing is going.
2-August
We went and visited Jason on Saturday (Terri and I). He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
2-August
From a brother: We went and visited Jason on Saturday. He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
1-August
From Mom: Things are looking up. Tomorrow the plan is to remove the vent! Tuesday. If the vent comes off, he will have swallowing studies to see if he can take some liquids by mouth. The stomach tube will come out after the studies. The wound had to be left open, so today the surgeon closed it with steri-strips and the wound V.A.C. (Vacuum Assisted Closure) can come off Tuesday if it looks like the strips are holding. The Foley catheter will come out and he can start getting up in a chair and will be moved out of ICU. We had a long talk with the surgeon today. The amount of feeding he is getting by the J tube has been increased and he is tolerating that. Physical Therapist started working with him two days ago.
29-July
From my sister: Just saw Jason again...he's still being weaned and is doing okay (not advancing in leaps and bounds but progressing). His wound is seeping less so that's a very good sign. His nurse told me Catherine brought by housemates today and she left a big bag of comics. I brought him some comics and some music but he was pretty out of it when I was there. At any rate, not too much to report though he is doing better.
27-July
From my sister: He's doing okay and they say he's progressing (more time off the vent). The surgeon is supposed to change his bandage tomorrow and he's starting to take some food in the J-tube. That said, he'll be in the hospital for a while longer. I'll be back tomorrow or on Thursday with some comics and some John Denver to entertain him.
26-July
Calling in the big guns, my sister is a genetics counselor with Genezyme called a clinical geneticist (expert on Prader-Willi at UCSF) that she knows to consult with the attending. Jason has a list of isms as long as your arm due to his birth mother’s drug addiction during pregnancy.
25-July-2010
Long story. Friday at day care he started having severe chest pain and shortness of breath. Went to ER by ambulance where he went in a respiratory arrest. Was put on the vent. X-ray showed a lump on food in the esophagus. The gastroenterologist was called in and did an endoscopy. The mass was so firm that he could not get the scope down. The cardiothoracic surgeon was called and he said wait till A.M. when he would see him and decide what to do. The surgeon called me and talked for about 10 minutes explaining what he wanted to do. They took Jason into surgery at 11;00 A.M. He got back to ICU about 6 P.M. The Dr. then called me back and said that he had used a large ridged scope and sucked out the food. (carrots, and ground meat.) Said that this had been there for some time. He could not get it all out so he called in a general surgeon and she opened up his abdomen and his stomach so they could stick their finger up to the obstruction and get the rest of it out. The food went from his neck to his stomach! A jejunostomy (feeding tube) was placed. He was afraid to go to a gastro tube for fear of aspiration. Then the pulmonologist did a bronchoscopy to see if any food was in his lungs. There was no food, but very red and inflamed lungs from aspiration. So he is still on the vent. Dad and I saw him about 9 P.M. Last night (Sat.) and he was knocked out-no response at all. This A.M. the med. had been lightened up and when we got there he knew who we were and could shake his head. While we were there, the surgeon came in and talked to us again for about 10 min. The pulmonarypulmonologist came in and said they were going to turn off the sedation and try to turn the vent down some to see how well he did. It had just been turned down when we left so don’t know how that went. For now and who knows how long, he will not be allowed to have anything by mouth.There will be swallowing studies at a later date to see if he can tolerate liquids. Can you see Jason going for months without putting something in his mouth? He has a long way to go and a lot can happen. He probably will not be able to go back to his house. I will keep you posted and will send an address for the hospital so you all can send cards. Ma.
P.S. I just talked to Jason’s (my foster brother) nurse. He did well being weened of the vent. For 3 hrs. but his breathing was too rapid at the end of the time so he is back on and will be tried off again this P.M. So keep your fingers crossed that he can come off tomorrow. And if they can get the tube out of his nose tomorrow he will feel much better.
Some updates on my brother's ER-ICU-hospital stay
A note about what follows: my adopted brother Jason is current 39 years old, 5’6“tall, 260# (morbidly obese) and has the intellectual development of a 6 year old. He has more conditions (isms) then you can believe including a very uncommon and poorly understood one: Prader-Willi Syndrome (hunger satiation mechanism doesn’t work, so they eat everything they see).
Jason came to our family when he was two years old. Due to being formula feed that entire time, his body had not grown and his head was the same size as his body. He had never turned over (neck muscles were not developed sufficiently to move his head), crawled or started to walk. He was expected to live less than a year the day we brought him home from the hospital. Needless to say, LOTS of work, lots of crying and lots of complaining later Jason is still here and dealing with the ramifications of that pre-natal situation.
Everyone wants to care for Jason because he is like a 6 year old until he gets angry - clearly the hospital and California law are going to be an ideal place for him to be lazy and (to borrow from Sordid Lives) not participate in his recovery.
9-August
Progress is slow - the nurses are coddling him way too much and doing everything for him so his progressed is slowed. The attending is considering moving him to a physical therapy ward where the nursing staff is used to patients complaining about the things they can and should do for themselves. This would likely be a very good thing since Jason has the nursing staff wrapped around his little finger.
6-August
Jason got out of ICU this afternoon! I talked to him the A.M. He was eating breakfast, coffee, oatmeal, eggs, and toast. The toast was a surprise. He sounded much stronger. He has dropped about 10#. So things are looking up. Thanks for the cards.
5-August
I stopped by and saw Jason this morning. The pulmonologist was also there and said that he's still got some fluid in his left lower lung. Jason needs to do his breathing exercises and sit up. Both of those happened while I was there and his nurse was made aware of how Jason's version of reality may be a wee bit different from others. He got a card from two brothers while I was there and was tickled pink.
They're thinking of moving him out of the ICU tomorrow. He's still on liquid feeds and is likely to remain so. Mom, I forgot to get his weight...
4-August
Today's talk with the M.D.--The CT scan didn’t show any infection, but there was fluid in the left lung. They drained that off today so he should be able to breathe better and with any luck the white count will come back down. The doc did say that Jason has charmed the nurses into not getting him up, so the doc had them get him up in a chair while he was there. I called later and talked to his nurse. I have been telling the nurses since day one that Jason was not going to move unless made to. The nurse said what a stressful day he had had and he was tired. Yes, that he was a charming patient and SO good. She was upset with the doc for making her get Jason up. I told her that Jason could not be given any options-that he was to be told he was going to get up NOW and walk. The whole time I was talking she was making cooing noises and saying how sweet he was. I probably didn’t get anywhere with her. I ended up saying that when Jason does get up to praise him and tell him she is going to let Mom and Catherine know how good he was and that the last thing Jason wanted was for Mom and Catherine to get a bad report. So (sister)when you see him tomorrow, maybe you can take him for a walk. Try to remember to have him ask his nurse how much he weighs (as they cannot tell me). I also recommended that physical therapy work with him. She asked if Jason was able to walk alone and I assured her that he could. So he is in ICU for at least one more day, maybe more. A dilated esophagus is not good It probably can only handle liquids.
3-August
I just talked with the MD. The swallow studies were good. He has a huge esophagus. The liquid went into his stomach and the stomach emptied. So he is going to start on sips of clear liquids. He has an elevated white count, but no temp. There will be a CT scan of the abdomen and chest tonight. He will stay in ICU until the cause of the white count is discovered. I talked to him on the phone today. It was a poor connection and he was talking very low and is hoarse, so it was not much of a conversation. He did say he loves (his nephew) and that Superman is his favorite so he is doing well as far as the breathing is going.
2-August
We went and visited Jason on Saturday (Terri and I). He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
2-August
From a brother: We went and visited Jason on Saturday. He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
1-August
From Mom: Things are looking up. Tomorrow the plan is to remove the vent! Tuesday. If the vent comes off, he will have swallowing studies to see if he can take some liquids by mouth. The stomach tube will come out after the studies. The wound had to be left open, so today the surgeon closed it with steri-strips and the wound V.A.C. (Vacuum Assisted Closure) can come off Tuesday if it looks like the strips are holding. The Foley catheter will come out and he can start getting up in a chair and will be moved out of ICU. We had a long talk with the surgeon today. The amount of feeding he is getting by the J tube has been increased and he is tolerating that. Physical Therapist started working with him two days ago.
29-July
From my sister: Just saw Jason again...he's still being weaned and is doing okay (not advancing in leaps and bounds but progressing). His wound is seeping less so that's a very good sign. His nurse told me Catherine brought by housemates today and she left a big bag of comics. I brought him some comics and some music but he was pretty out of it when I was there. At any rate, not too much to report though he is doing better.
27-July
From my sister: He's doing okay and they say he's progressing (more time off the vent). The surgeon is supposed to change his bandage tomorrow and he's starting to take some food in the J-tube. That said, he'll be in the hospital for a while longer. I'll be back tomorrow or on Thursday with some comics and some John Denver to entertain him.
26-July
Calling in the big guns, my sister is a genetics counselor with Genezyme called a clinical geneticist (expert on Prader-Willi at UCSF) that she knows to consult with the attending. Jason has a list of isms as long as your arm due to his birth mother’s drug addiction during pregnancy.
25-July-2010
Long story. Friday at day care he started having severe chest pain and shortness of breath. Went to ER by ambulance where he went in a respiratory arrest. Was put on the vent. X-ray showed a lump on food in the esophagus. The gastroenterologist was called in and did an endoscopy. The mass was so firm that he could not get the scope down. The cardiothoracic surgeon was called and he said wait till A.M. when he would see him and decide what to do. The surgeon called me and talked for about 10 minutes explaining what he wanted to do. They took Jason into surgery at 11;00 A.M. He got back to ICU about 6 P.M. The Dr. then called me back and said that he had used a large ridged scope and sucked out the food. (carrots, and ground meat.) Said that this had been there for some time. He could not get it all out so he called in a general surgeon and she opened up his abdomen and his stomach so they could stick their finger up to the obstruction and get the rest of it out. The food went from his neck to his stomach! A jejunostomy (feeding tube) was placed. He was afraid to go to a gastro tube for fear of aspiration. Then the pulmonologist did a bronchoscopy to see if any food was in his lungs. There was no food, but very red and inflamed lungs from aspiration. So he is still on the vent. Dad and I saw him about 9 P.M. Last night (Sat.) and he was knocked out-no response at all. This A.M. the med. had been lightened up and when we got there he knew who we were and could shake his head. While we were there, the surgeon came in and talked to us again for about 10 min. The pulmonarypulmonologist came in and said they were going to turn off the sedation and try to turn the vent down some to see how well he did. It had just been turned down when we left so don’t know how that went. For now and who knows how long, he will not be allowed to have anything by mouth.There will be swallowing studies at a later date to see if he can tolerate liquids. Can you see Jason going for months without putting something in his mouth? He has a long way to go and a lot can happen. He probably will not be able to go back to his house. I will keep you posted and will send an address for the hospital so you all can send cards. Ma.
P.S. I just talked to Jason’s (my foster brother) nurse. He did well being weened of the vent. For 3 hrs. but his breathing was too rapid at the end of the time so he is back on and will be tried off again this P.M. So keep your fingers crossed that he can come off tomorrow. And if they can get the tube out of his nose tomorrow he will feel much better.
Jason came to our family when he was two years old. Due to being formula feed that entire time, his body had not grown and his head was the same size as his body. He had never turned over (neck muscles were not developed sufficiently to move his head), crawled or started to walk. He was expected to live less than a year the day we brought him home from the hospital. Needless to say, LOTS of work, lots of crying and lots of complaining later Jason is still here and dealing with the ramifications of that pre-natal situation.
Everyone wants to care for Jason because he is like a 6 year old until he gets angry - clearly the hospital and California law are going to be an ideal place for him to be lazy and (to borrow from Sordid Lives) not participate in his recovery.
9-August
Progress is slow - the nurses are coddling him way too much and doing everything for him so his progressed is slowed. The attending is considering moving him to a physical therapy ward where the nursing staff is used to patients complaining about the things they can and should do for themselves. This would likely be a very good thing since Jason has the nursing staff wrapped around his little finger.
6-August
Jason got out of ICU this afternoon! I talked to him the A.M. He was eating breakfast, coffee, oatmeal, eggs, and toast. The toast was a surprise. He sounded much stronger. He has dropped about 10#. So things are looking up. Thanks for the cards.
5-August
I stopped by and saw Jason this morning. The pulmonologist was also there and said that he's still got some fluid in his left lower lung. Jason needs to do his breathing exercises and sit up. Both of those happened while I was there and his nurse was made aware of how Jason's version of reality may be a wee bit different from others. He got a card from two brothers while I was there and was tickled pink.
They're thinking of moving him out of the ICU tomorrow. He's still on liquid feeds and is likely to remain so. Mom, I forgot to get his weight...
4-August
Today's talk with the M.D.--The CT scan didn’t show any infection, but there was fluid in the left lung. They drained that off today so he should be able to breathe better and with any luck the white count will come back down. The doc did say that Jason has charmed the nurses into not getting him up, so the doc had them get him up in a chair while he was there. I called later and talked to his nurse. I have been telling the nurses since day one that Jason was not going to move unless made to. The nurse said what a stressful day he had had and he was tired. Yes, that he was a charming patient and SO good. She was upset with the doc for making her get Jason up. I told her that Jason could not be given any options-that he was to be told he was going to get up NOW and walk. The whole time I was talking she was making cooing noises and saying how sweet he was. I probably didn’t get anywhere with her. I ended up saying that when Jason does get up to praise him and tell him she is going to let Mom and Catherine know how good he was and that the last thing Jason wanted was for Mom and Catherine to get a bad report. So (sister)when you see him tomorrow, maybe you can take him for a walk. Try to remember to have him ask his nurse how much he weighs (as they cannot tell me). I also recommended that physical therapy work with him. She asked if Jason was able to walk alone and I assured her that he could. So he is in ICU for at least one more day, maybe more. A dilated esophagus is not good It probably can only handle liquids.
3-August
I just talked with the MD. The swallow studies were good. He has a huge esophagus. The liquid went into his stomach and the stomach emptied. So he is going to start on sips of clear liquids. He has an elevated white count, but no temp. There will be a CT scan of the abdomen and chest tonight. He will stay in ICU until the cause of the white count is discovered. I talked to him on the phone today. It was a poor connection and he was talking very low and is hoarse, so it was not much of a conversation. He did say he loves (his nephew) and that Superman is his favorite so he is doing well as far as the breathing is going.
2-August
We went and visited Jason on Saturday (Terri and I). He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
2-August
From a brother: We went and visited Jason on Saturday. He seemed in good spirits and was very alert. I felt so bad for him, imagine poor Jason strapped to a bed without any opportunity to talk! Gavin made him a picture of Superman that we left with the comic books and things. I'm glad to hear he's making good progress.
What was the deal with all the sores on his arms? is that just from him picking at himself? Did I just never notice those before?
1-August
From Mom: Things are looking up. Tomorrow the plan is to remove the vent! Tuesday. If the vent comes off, he will have swallowing studies to see if he can take some liquids by mouth. The stomach tube will come out after the studies. The wound had to be left open, so today the surgeon closed it with steri-strips and the wound V.A.C. (Vacuum Assisted Closure) can come off Tuesday if it looks like the strips are holding. The Foley catheter will come out and he can start getting up in a chair and will be moved out of ICU. We had a long talk with the surgeon today. The amount of feeding he is getting by the J tube has been increased and he is tolerating that. Physical Therapist started working with him two days ago.
29-July
From my sister: Just saw Jason again...he's still being weaned and is doing okay (not advancing in leaps and bounds but progressing). His wound is seeping less so that's a very good sign. His nurse told me Catherine brought by housemates today and she left a big bag of comics. I brought him some comics and some music but he was pretty out of it when I was there. At any rate, not too much to report though he is doing better.
27-July
From my sister: He's doing okay and they say he's progressing (more time off the vent). The surgeon is supposed to change his bandage tomorrow and he's starting to take some food in the J-tube. That said, he'll be in the hospital for a while longer. I'll be back tomorrow or on Thursday with some comics and some John Denver to entertain him.
26-July
Calling in the big guns, my sister is a genetics counselor with Genezyme called a clinical geneticist (expert on Prader-Willi at UCSF) that she knows to consult with the attending. Jason has a list of isms as long as your arm due to his birth mother’s drug addiction during pregnancy.
25-July-2010
Long story. Friday at day care he started having severe chest pain and shortness of breath. Went to ER by ambulance where he went in a respiratory arrest. Was put on the vent. X-ray showed a lump on food in the esophagus. The gastroenterologist was called in and did an endoscopy. The mass was so firm that he could not get the scope down. The cardiothoracic surgeon was called and he said wait till A.M. when he would see him and decide what to do. The surgeon called me and talked for about 10 minutes explaining what he wanted to do. They took Jason into surgery at 11;00 A.M. He got back to ICU about 6 P.M. The Dr. then called me back and said that he had used a large ridged scope and sucked out the food. (carrots, and ground meat.) Said that this had been there for some time. He could not get it all out so he called in a general surgeon and she opened up his abdomen and his stomach so they could stick their finger up to the obstruction and get the rest of it out. The food went from his neck to his stomach! A jejunostomy (feeding tube) was placed. He was afraid to go to a gastro tube for fear of aspiration. Then the pulmonologist did a bronchoscopy to see if any food was in his lungs. There was no food, but very red and inflamed lungs from aspiration. So he is still on the vent. Dad and I saw him about 9 P.M. Last night (Sat.) and he was knocked out-no response at all. This A.M. the med. had been lightened up and when we got there he knew who we were and could shake his head. While we were there, the surgeon came in and talked to us again for about 10 min. The pulmonarypulmonologist came in and said they were going to turn off the sedation and try to turn the vent down some to see how well he did. It had just been turned down when we left so don’t know how that went. For now and who knows how long, he will not be allowed to have anything by mouth.There will be swallowing studies at a later date to see if he can tolerate liquids. Can you see Jason going for months without putting something in his mouth? He has a long way to go and a lot can happen. He probably will not be able to go back to his house. I will keep you posted and will send an address for the hospital so you all can send cards. Ma.
P.S. I just talked to Jason’s (my foster brother) nurse. He did well being weened of the vent. For 3 hrs. but his breathing was too rapid at the end of the time so he is back on and will be tried off again this P.M. So keep your fingers crossed that he can come off tomorrow. And if they can get the tube out of his nose tomorrow he will feel much better.
Tuesday, August 10, 2010
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