Friday, April 30, 2010
10 Steps!
Michael took ten steps today with the assistance of a walker!
Select needs his room for ventilator patients so he may have to change rooms before his move to Spalding. We are waiting to see if our insurance will cover his rehab stay.
I brought grape juice and Challa for Shabbat dinner and the deli supplied the rest of the of the food.
I haven't decided yet if I will walk to the hospital on Shabbat. I think it will take about 2 hours as I am not a fast walker. I guess it depends if the weather is nice or not. It is supposed to rain tomorrow.
Select needs his room for ventilator patients so he may have to change rooms before his move to Spalding. We are waiting to see if our insurance will cover his rehab stay.
I brought grape juice and Challa for Shabbat dinner and the deli supplied the rest of the of the food.
I haven't decided yet if I will walk to the hospital on Shabbat. I think it will take about 2 hours as I am not a fast walker. I guess it depends if the weather is nice or not. It is supposed to rain tomorrow.
Muscle Function
People have asked me to explain why Michael is paralyzed (temporarily).
In order to save Michael's life during the critical stage of ARDS (acute respiratory distress syndrome - sever lung damage due to the H1N1 and pneumonia), they had to give him paralytics (to stop the coughing), steroids (to decrease the inflammation in his lungs), and narcotics for the pain. He was in bed for a month. People lose muscle if they just stay in bed for a short time. A week in bed can cause some significant mobility issues. Michael was bedridden for a month. Paralytics and steroids cause muscle weakness. The choice was, death due to ARDS or temporary paralysis.
The coughing fits caused his oxygen saturation to become dangerously low. His lungs had to have time to heal and the only way to do that was to let the respirator breathe for him. Breathing is an unconscious function controlled by involuntary muscles. The paralytics were necessary to disable his involuntary muscles.
What muscles are affected by the paralytics, steroids and bed rest? Muscles are necessary for swallowing, breathing, standing, walking and even using the bathroom. Every move we make, whether voluntary or involuntary, requires muscle function.
Hopefully, Michael will recover muscle strength with PT and OT.
In order to save Michael's life during the critical stage of ARDS (acute respiratory distress syndrome - sever lung damage due to the H1N1 and pneumonia), they had to give him paralytics (to stop the coughing), steroids (to decrease the inflammation in his lungs), and narcotics for the pain. He was in bed for a month. People lose muscle if they just stay in bed for a short time. A week in bed can cause some significant mobility issues. Michael was bedridden for a month. Paralytics and steroids cause muscle weakness. The choice was, death due to ARDS or temporary paralysis.
The coughing fits caused his oxygen saturation to become dangerously low. His lungs had to have time to heal and the only way to do that was to let the respirator breathe for him. Breathing is an unconscious function controlled by involuntary muscles. The paralytics were necessary to disable his involuntary muscles.
What muscles are affected by the paralytics, steroids and bed rest? Muscles are necessary for swallowing, breathing, standing, walking and even using the bathroom. Every move we make, whether voluntary or involuntary, requires muscle function.
Hopefully, Michael will recover muscle strength with PT and OT.
Thursday, April 29, 2010
Rolling!
Michael had help from 2 people to pivot into a wheelchair. He was given a portable oxygen tank and I got to take him out of his room! Today he was on 3-5 liters of oxygen via nasal cannula. He was even strong enough to use his arms to move the wheelchair for a short time. The staff was pleased to see him roaming the halls. His arms and legs continue to gain strength. I know he is eager to be able to move around the room by himself. That would be freedom!
Sitting up was well tolerated and he sat for most of the afternoon. The doctors at Select say Michael is ready for more physical therapy!
I went up to Spalding on the 6th floor and ran into Yechiel Kleen (member of EDOS, his daughter is the same age as my daughter, Alana). He is the doctor in charge there. I asked him which Spalding facility is better. Apparently, the one in Aurora is currently under renovation so part of the hospital is closed. Yechiel said he would recommend the one located in PSL due to Michael's medical condition. He said if Michael wants in, he will make sure he gets a private room. The staff at Select just need to ask for a referral and someone from Spalding will come and evaluate him.
Sitting up was well tolerated and he sat for most of the afternoon. The doctors at Select say Michael is ready for more physical therapy!
I went up to Spalding on the 6th floor and ran into Yechiel Kleen (member of EDOS, his daughter is the same age as my daughter, Alana). He is the doctor in charge there. I asked him which Spalding facility is better. Apparently, the one in Aurora is currently under renovation so part of the hospital is closed. Yechiel said he would recommend the one located in PSL due to Michael's medical condition. He said if Michael wants in, he will make sure he gets a private room. The staff at Select just need to ask for a referral and someone from Spalding will come and evaluate him.
No more Trach!
Michael's Trach was removed today!
The hole in his neck will slowly heal and close up. It was covered with gauze today. He will have to apply pressure on the hole while coughing or talking until it seals itself. Jeff, the RT (Respiratory Therapist) said it should close significantly in just a few days.
He had another secession with the Speech Therapist. She applied the electrodes to his neck and gave him electric shocks to stimulate swallowing. Now he can have popcicles and clear liquids. Today he had oatmeal for breakfast, a tuna sandwich for lunch, a peanut butter sandwich, chicken soup and applesauce for dinner. He is allowed ice water or juice between meals.
I spoke to the clinical dietitian and we agreed that Michael would only be fed through his PEEG tube (in his stomach) for 8 hours from 10PM-6AM. This would allow him to feel hungry. His blood sugar will now be tested before meals.
He will get bolus tube feedings after meals if he doesn't eat well.
I spoke to the food service dietitian and we put lots of kosher food in his room and a few items are set aside for him in the refrigerator on the floor.
The hole in his neck will slowly heal and close up. It was covered with gauze today. He will have to apply pressure on the hole while coughing or talking until it seals itself. Jeff, the RT (Respiratory Therapist) said it should close significantly in just a few days.
He had another secession with the Speech Therapist. She applied the electrodes to his neck and gave him electric shocks to stimulate swallowing. Now he can have popcicles and clear liquids. Today he had oatmeal for breakfast, a tuna sandwich for lunch, a peanut butter sandwich, chicken soup and applesauce for dinner. He is allowed ice water or juice between meals.
I spoke to the clinical dietitian and we agreed that Michael would only be fed through his PEEG tube (in his stomach) for 8 hours from 10PM-6AM. This would allow him to feel hungry. His blood sugar will now be tested before meals.
He will get bolus tube feedings after meals if he doesn't eat well.
I spoke to the food service dietitian and we put lots of kosher food in his room and a few items are set aside for him in the refrigerator on the floor.
Wednesday, April 28, 2010
How to choose a nursing home or rehab
Ask your doctor friends where they would recommend for rehab or a Nursing Home. Go visit the facility during the day and night shifts. Come prepared with questions. Do they take your insurance? What is their staff to patient ratio? Do not let fancy PR fool you. Try to observe if the patients are cared for and pay attention to see if the staff is happy. Is the staff overwhelmed? Find out the staff schedule. When is shift change? Who cares for the patients during shift change? Do you have access to the doctors/nurses? How often do the patients receive OT and PT? Is the place clean? You can look up the rating of nursing homes on the internet. Make sure where you place your loved one is safe.
How to choose a hospital
How do you know what hospital to use? Your first visit to a hospital may be to the emergency room. Where do you go in Denver? First, ask you doctor friends where they recommend. In the Denver area, Denver Health is the best ER for trauma. If a person has a major injury the ambulance will most likely take you to Denver Health or Swedish.
An EMT may ask you what hospital you want to go to. Health care providers that I have spoken to suggest PSL (Presbyterian Saint Lukes) has the fastest ER.
If you have a child your first preference may be Children's Hospital. If your child requires surgery Children's Hospital gives priority to the youngest infant. If your child is older they will be placed later in the day. If your child needs a simple procedure, it may be wise to take them to another hospital in town. For example Rose Medical Center (RMC) gives priority to children over adults for surgery times. Kids will get an earlier time than adults. If your child needs surgery, you will not want them to have to fast all day before their surgery. An early surgery time means you will be home earlier. Talk to friends and doctors concerning your illness/injury and ask where they suggest for care. Each hospital has its pluses and minuses. Remember to have a family member or friend to act as a health care advocate for you while your in the hospital.
An EMT may ask you what hospital you want to go to. Health care providers that I have spoken to suggest PSL (Presbyterian Saint Lukes) has the fastest ER.
If you have a child your first preference may be Children's Hospital. If your child requires surgery Children's Hospital gives priority to the youngest infant. If your child is older they will be placed later in the day. If your child needs a simple procedure, it may be wise to take them to another hospital in town. For example Rose Medical Center (RMC) gives priority to children over adults for surgery times. Kids will get an earlier time than adults. If your child needs surgery, you will not want them to have to fast all day before their surgery. An early surgery time means you will be home earlier. Talk to friends and doctors concerning your illness/injury and ask where they suggest for care. Each hospital has its pluses and minuses. Remember to have a family member or friend to act as a health care advocate for you while your in the hospital.
How to find a doctor
If you are looking for a doctor ask your friends who they go to. Call the person recommended and ask if they honor your insurance and if they are taking mew patients. Make an appointment to meet them and ask if there is a fee for this meet and greet. Bring a list of questions that concern you. Besides speaking to the physician, talk to the office staff, they are the gate keepers for the physician. Bring a list of your medications and your medical history. Ask the doctor/staff about how easy it is to get an appointment. Do you have to wait weeks or months to see the doctor? What is the average waiting time in the office? How much time does the doctor spend with each patient? Has the doctor treated a person with your medical history? If there is an emergency, can you see the doctor that morning or that day? What happens at night or on the weekends/holidays? Who are the doctors on call? If you do not feel comfortable asking the doctor questions, choose another health care provider. You should always feel comfortable with your doctor. If you are intimidated please pick someone else.
When I was looking for a pediatrician I asked a friend of mine with the most children who she used. It turned out to be a great choice.
When I was looking for a pediatrician I asked a friend of mine with the most children who she used. It turned out to be a great choice.
Moving!
At rounds today the doctors discussed Michael's progress. They said that he will be ready to be moved on Monday to a facility which offers a greater amount of physical therapy. The doctors will discuss possible facilities with me before the move.
Tube Feedings
Michael is still receiving tube feedings (Glucerna). I discussed this with the dietitian. She said the Michael will still require the feedings until he is eating well. She said the daily feedings will be discontinued and just night feedings would be necessary. She also said that Michael would get a bolus of Glucerna after breakfast and after dinner. It is necessary to discontinue 24 hour feedings or Michael won't be hungry. The nurse came in to reattach his feedings at 5 PM, before dinner! Michael said that isn't appropriate. How would he be hungry if the feedings continue? The nurse was nice enough to tell him that she could wait until 6 or 7 PM. Michael was told night feedings mean 6PM until 6AM. I will discuss this with the clinical dietitian tomorrow, because that isn't my idea of night feeding.
This afternoon Michael's tube feeding was discontinued because he left his room for his test. When he got back from his test he was told he could eat and was given food. After he finished, the CNA came in to check his blood sugar! I told the CNA that was not appropriate, because he just ate. He would need to wait 2 hours after Michael ate to check his blood sugar. His blood sugar was high and the RN came in to give him an insulin shot. I told her that wasn't appropriate as he just finished eating and he was off his tube feeding. She agreed that his blood sugar should have been checked before he ate, but gave him the insulin anyway as it was only 3 units.
Michael was brought food for dinner. He waited until someone came to check his blood glucose because he did not want a repeat of this afternoon's fiasco. Not surprisingly, it was really low, way too low! They gave him a bolus of Glucerna.
Food was ordered from the East Side Kosher deli for dinner tonight and breakfast tomorrow, however the food Michael got wasn't from the deli. I had left some items for him so he did have something to eat. I called the Deli, they had indeed sent the food to PSL. I called the floor, they didn't know what happened to the food from the deli. I left a message for the dietitian in charge of food service at PSL and asked her to contact me in the morning.
This afternoon Michael's tube feeding was discontinued because he left his room for his test. When he got back from his test he was told he could eat and was given food. After he finished, the CNA came in to check his blood sugar! I told the CNA that was not appropriate, because he just ate. He would need to wait 2 hours after Michael ate to check his blood sugar. His blood sugar was high and the RN came in to give him an insulin shot. I told her that wasn't appropriate as he just finished eating and he was off his tube feeding. She agreed that his blood sugar should have been checked before he ate, but gave him the insulin anyway as it was only 3 units.
Michael was brought food for dinner. He waited until someone came to check his blood glucose because he did not want a repeat of this afternoon's fiasco. Not surprisingly, it was really low, way too low! They gave him a bolus of Glucerna.
Food was ordered from the East Side Kosher deli for dinner tonight and breakfast tomorrow, however the food Michael got wasn't from the deli. I had left some items for him so he did have something to eat. I called the Deli, they had indeed sent the food to PSL. I called the floor, they didn't know what happened to the food from the deli. I left a message for the dietitian in charge of food service at PSL and asked her to contact me in the morning.
Food Glorious Food!
Michael has now gone for 48 hours on the Trach collar and they took the ventilator out of the room! He is currently using a nasal cannula on 5 liters of O2. After 72 hours, with no significant problems, they will be able to remove the Trach! WOW! Hopefully that will be done tomorrow!
Last night he had his first shower since March! He was moved to the shower area, and sat in warm running water! If the CNA (nurse) hadn't been so concerned about Michael's O2 saturation, he would have had a much better time.
When Michael was getting back into bed after his shower, his new peripheral line accidentally was pulled out. The RN (nurse) was informed about the accident, and said he doesn't need it any longer.
Today he had modified barium swallow (a test to determine his ability to swallow). He was allowed to have a few spoonfuls of applesauce, some thickened juice and a bit of graham cracker. (I checked all the items and they were kosher-even the thickener). He did pretty well on the test and is now allowed thickened liquids, pureed items and soft foods. Tomorrow I will bring him a peanut butter and jelly sandwich. I had a talk with the dietitian and told her how everything Michael gets has to be in sealed containers with kosher markings on it. Items were ordered from the East Side Kosher Deli for tonight and tomorrow. He didn't get the items for tonight so I will call the dietitian and confirm items for tomorrow.
Between meals Michael can have ice chips and water. He is not allowed to drink with meals because that may cause him to aspirate. The speech therapist will still attach electrodes with electric current to his throat to stimulate swallowing. Hopefully, he will be able to progress to solid foods soon.
Today Michael worked with OT and PT. He was able to stand and pivot to a chair three times. He sat in a chair for 2 hours today. He stood up three times with the help of 2 people. Standing is very difficult for him because his heart isn't accustomed to pumping all the way up to his head! His body will have to adjust to his changes in position and this may take some time.
Last night he had his first shower since March! He was moved to the shower area, and sat in warm running water! If the CNA (nurse) hadn't been so concerned about Michael's O2 saturation, he would have had a much better time.
When Michael was getting back into bed after his shower, his new peripheral line accidentally was pulled out. The RN (nurse) was informed about the accident, and said he doesn't need it any longer.
Today he had modified barium swallow (a test to determine his ability to swallow). He was allowed to have a few spoonfuls of applesauce, some thickened juice and a bit of graham cracker. (I checked all the items and they were kosher-even the thickener). He did pretty well on the test and is now allowed thickened liquids, pureed items and soft foods. Tomorrow I will bring him a peanut butter and jelly sandwich. I had a talk with the dietitian and told her how everything Michael gets has to be in sealed containers with kosher markings on it. Items were ordered from the East Side Kosher Deli for tonight and tomorrow. He didn't get the items for tonight so I will call the dietitian and confirm items for tomorrow.
Between meals Michael can have ice chips and water. He is not allowed to drink with meals because that may cause him to aspirate. The speech therapist will still attach electrodes with electric current to his throat to stimulate swallowing. Hopefully, he will be able to progress to solid foods soon.
Today Michael worked with OT and PT. He was able to stand and pivot to a chair three times. He sat in a chair for 2 hours today. He stood up three times with the help of 2 people. Standing is very difficult for him because his heart isn't accustomed to pumping all the way up to his head! His body will have to adjust to his changes in position and this may take some time.
Tuesday, April 27, 2010
Peripheral Line
Michael had a central line with four lumens surgically implanted in his neck on March 25 just after his was intubated. The central line is a site for IV's which go into the jugular. He also had an arterial line placed in his right wrist and a peripheral line placed in his right arm. He was receiving many IVs during his stay in the ICU.
The central line and arterial line were removed before his transfer to Select Specialty Hospital. A peripheral line was placed in his left arm just before the central line was removed. It is very important for the hospital staff to have IV access on a patient on a respirator. If something goes wrong they can quickly act by giving medication and fluids. IV access can mean the difference between life and death in a critically ill patient.
I had asked the nurse to put the peripheral line in Michael's left arm because he is right handed. They had put his arterial line in his right arm and this prevented movement of his arm/hand. The doctor tried to put the arterial line near Michael's left wrist, but he was unable to get proper access, so it was placed in the right wrist. When Michael regained consciousness I knew he would want to use his right hand.
IV lines must be flushed with saline daily and need to be removed after 3 days. Michael's peripheral line was placed before he left the ICU. I asked about having it replaced when he got to Select. I was told that it was fine because it was able to intake fluids. I did not noticed any sign of infection, discomfort or misplacement so I stopped complaining. He has been at Select for over a week.
Today his line was removed and replaced with another peripheral line. The nurse said that it should be replaced every three days. She told Michael to tell the nurses to flush it each day! I said the staff is responsible for IV maintenance, not the patient! She said she would pass along the information during report this evening. I wrote a note on Michael's white board to flush his line daily and change it on May 1.
Michael wanted the line to be removed, I told him that would be possible when he is medically stable.
The central line and arterial line were removed before his transfer to Select Specialty Hospital. A peripheral line was placed in his left arm just before the central line was removed. It is very important for the hospital staff to have IV access on a patient on a respirator. If something goes wrong they can quickly act by giving medication and fluids. IV access can mean the difference between life and death in a critically ill patient.
I had asked the nurse to put the peripheral line in Michael's left arm because he is right handed. They had put his arterial line in his right arm and this prevented movement of his arm/hand. The doctor tried to put the arterial line near Michael's left wrist, but he was unable to get proper access, so it was placed in the right wrist. When Michael regained consciousness I knew he would want to use his right hand.
IV lines must be flushed with saline daily and need to be removed after 3 days. Michael's peripheral line was placed before he left the ICU. I asked about having it replaced when he got to Select. I was told that it was fine because it was able to intake fluids. I did not noticed any sign of infection, discomfort or misplacement so I stopped complaining. He has been at Select for over a week.
Today his line was removed and replaced with another peripheral line. The nurse said that it should be replaced every three days. She told Michael to tell the nurses to flush it each day! I said the staff is responsible for IV maintenance, not the patient! She said she would pass along the information during report this evening. I wrote a note on Michael's white board to flush his line daily and change it on May 1.
Michael wanted the line to be removed, I told him that would be possible when he is medically stable.
Small Steps
Michael was changed to a nasal cannula this morning, and his Trach was capped. He is able to speak! He was shaved in preparation for electrodes which will be placed on his throat. Hair acts as an amplifier of current, so it has to be removed. At 4PM he was able to stand for a second (with help) and pivot to a chair! The speech therapist came in and attached electrodes to his neck and gave him shocks to promote swallowing. OUCH! He got to suck on three glycerin swabs and he was able to feed himself ice chips (one per minute for 10 minutes). He was still sitting went I left at 6:30 PM and he was doing fine. He is in good spirits, though he is frustrated at not being able to do more.
Tomorrow he will have a modified Barium Swallow test to determine his ability to swallow. The goal; to see if he can eat!
All the health care workers who came in today couldn't believe the progress Michael has achieved in a week. Baruch HaShem!
I can't believe how I used to take breathing, sitting, walking, eating and talking for granted. Now I am so excited about each of these small steps forward.
This morning I called Rocky Mountain Cancer Center to move Michael's long term follow up appointment from April to June. I was told that Michael's doctor (Jeff Matous) was at PSL today, so I went to find him. None of the staff on the 3rd or 4th floors had seen him yet, so I left a message for him to come up to 5 and see Michael. One of the nurses saw him and gave him the message. Dr. Matous came up to see Michael and told Michael how amazing he is. What a survivor! He has seen people with intact immune systems succumb to H1N1. Michael is still fighting!
Tomorrow he will have a modified Barium Swallow test to determine his ability to swallow. The goal; to see if he can eat!
All the health care workers who came in today couldn't believe the progress Michael has achieved in a week. Baruch HaShem!
I can't believe how I used to take breathing, sitting, walking, eating and talking for granted. Now I am so excited about each of these small steps forward.
This morning I called Rocky Mountain Cancer Center to move Michael's long term follow up appointment from April to June. I was told that Michael's doctor (Jeff Matous) was at PSL today, so I went to find him. None of the staff on the 3rd or 4th floors had seen him yet, so I left a message for him to come up to 5 and see Michael. One of the nurses saw him and gave him the message. Dr. Matous came up to see Michael and told Michael how amazing he is. What a survivor! He has seen people with intact immune systems succumb to H1N1. Michael is still fighting!
Caregiver/Prayer
When Michael was going through his treatment for Leukemia, I would often mention how "we" were going through chemotherapy/radiation. Obviously, Michael was the one who had the treatment, however the caregiver also "goes along for the ride". I often explain to people that cancer is like being on a roller coaster in the dark. You never know if you are going up or down. If you think you are handling the roller coaster a tidal wave comes along and hits! You just have to hold on.
It is important for the caregiver to eat right (moderation in all things), try to get some sleep and keep a positive attitude. Strain can get to any caregiver, no matter how much support they have. While Michael was critical, I would wake up and not know where I was, in the confusion I would feel my neck to see if I had a Trach!
While on the journey to recovery it is necessary to be as informed as possible. However, being informed isn't enough. A support group is essential! We don't have an extended family in Denver as support. Thank you, Will and Yaakov for coming in as relief. Your support was invaluable.
We are so lucky to live in Denver. The community has become our family. They provide a hand to hold, a shoulder to cry on, and a listening ear. They are encouraged by the improvements and pray for a speedy and complete recovery.
During each hospital stay the social worker or care manager ask if I have a support group. I respond, "I have a wonderful support system". The Denver community has cooked for me, stocked the refrigerator for Passover, provided walking company to and from the hospital, brought food to my house or hospital, kidnapped me for meals (we are taking you now for lunch/dinner), picked me up after Shabbat/Yontif, and started an evening Maj group so I could play. They came to the hospital to keep me company when I wasn't allowed to be with Michael. The doctors in the community offered their expertise. This was invaluable, THANK YOU! The advise I got helped save Michael's life and certainly made him more comfortable.
Every aspect of support was necessary to aide in Michael's recovery. Prayer, is very important and very necessary for recovery. The community prayed for Michael and continues to do so, and this has made all the difference! We are very fortunate that people are praying for Michael all over the United States and in Israel. Friends (and family) have gone to the Kotel and to the Kever of Rabbi Meir Baal Haneis to daven for Michael and I have seen miracles! Thank you all! Keep up the good work!
It is important for the caregiver to eat right (moderation in all things), try to get some sleep and keep a positive attitude. Strain can get to any caregiver, no matter how much support they have. While Michael was critical, I would wake up and not know where I was, in the confusion I would feel my neck to see if I had a Trach!
While on the journey to recovery it is necessary to be as informed as possible. However, being informed isn't enough. A support group is essential! We don't have an extended family in Denver as support. Thank you, Will and Yaakov for coming in as relief. Your support was invaluable.
We are so lucky to live in Denver. The community has become our family. They provide a hand to hold, a shoulder to cry on, and a listening ear. They are encouraged by the improvements and pray for a speedy and complete recovery.
During each hospital stay the social worker or care manager ask if I have a support group. I respond, "I have a wonderful support system". The Denver community has cooked for me, stocked the refrigerator for Passover, provided walking company to and from the hospital, brought food to my house or hospital, kidnapped me for meals (we are taking you now for lunch/dinner), picked me up after Shabbat/Yontif, and started an evening Maj group so I could play. They came to the hospital to keep me company when I wasn't allowed to be with Michael. The doctors in the community offered their expertise. This was invaluable, THANK YOU! The advise I got helped save Michael's life and certainly made him more comfortable.
Every aspect of support was necessary to aide in Michael's recovery. Prayer, is very important and very necessary for recovery. The community prayed for Michael and continues to do so, and this has made all the difference! We are very fortunate that people are praying for Michael all over the United States and in Israel. Friends (and family) have gone to the Kotel and to the Kever of Rabbi Meir Baal Haneis to daven for Michael and I have seen miracles! Thank you all! Keep up the good work!
Monday, April 26, 2010
GR8 Progress!
Today Michael's brother, Yaakov, took the morning shift while I caught up on some errands and went for a much needed visit to my mother (who has 24 hour care and is on hospice care).
1.Michael sat up in the cardiac chair. 2. He stood up three times with the help of 2 people. 3. He was able to tolerate 20 minutes of room air (no 02 into the Trach). 4. His trach was downsized and capped so he could speak. His first word to his brother was "hello". The first sounds I heard were yelps of pain. His first words while I was with him were "thank you". When his Trach is capped he can speak. It will be uncapped at night so he can breath more easily. Tomorrow it will be capped again so he can speak.
We talked about what he experienced while in the ICU and what he remembers of being at Rose Medical Center (RMC). He admits the drugs made him hallucinate and clouded his memory. He told he that he knows what he wants for his birthday, a new watch. I asked why he needed a new watch? He said because his watch was smashed and put up on the walls of the ICU. I said that I took it home and it is just fine. One of his hallucinations was that he no longer had feet/legs, they had turned into blue umbrellas. He has bright blue boots which protect his heels. He thought they were umbrellas! He figured he couldn't move because his legs were gone! How horrifying. No wonder he was so frightened. I could see from the look in his eyes in the ICU that he was terrified. I tried to tell him that he was getting better and that he was in the best ICU in the country for lung problems. He doesn't remember any of that. He has no recollection of his time at RMC at all. The only thing his does remember about RMC, was one of his guests and drinking Mucomyst (it smells and tastes like rotten eggs-it is taken before a test to protect the kidneys). Taste and smell can be very powerful memory enhancers.
He still has his sense of humor, the nurse asked, "where do you want your insulin shot?" His reply, "YOUR arm". We all laughed.
If you are wondering how his mental faculties are, he did the word Jumble in the Denver Post today! I needed help with it.
He was disappointed at missing Passover. I told him not to worry, we will have a Seder when he gets well.
He asked for a computer and he said he would try to write a few emails tomorrow.
The doctors' goals for the week are to convert to a nasal cannula and cap his Trach.
He says he wants to go home by the end of the week. I asked what will he do about stairs in the house. He said that he will be doing stairs by the end of the week. I hope so, but I believe he still needs to be able to sit before he can walk and before he can go up stairs! I know he is motivated and he often surpasses the goals set by the physicians. Go Big Mike!
1.Michael sat up in the cardiac chair. 2. He stood up three times with the help of 2 people. 3. He was able to tolerate 20 minutes of room air (no 02 into the Trach). 4. His trach was downsized and capped so he could speak. His first word to his brother was "hello". The first sounds I heard were yelps of pain. His first words while I was with him were "thank you". When his Trach is capped he can speak. It will be uncapped at night so he can breath more easily. Tomorrow it will be capped again so he can speak.
We talked about what he experienced while in the ICU and what he remembers of being at Rose Medical Center (RMC). He admits the drugs made him hallucinate and clouded his memory. He told he that he knows what he wants for his birthday, a new watch. I asked why he needed a new watch? He said because his watch was smashed and put up on the walls of the ICU. I said that I took it home and it is just fine. One of his hallucinations was that he no longer had feet/legs, they had turned into blue umbrellas. He has bright blue boots which protect his heels. He thought they were umbrellas! He figured he couldn't move because his legs were gone! How horrifying. No wonder he was so frightened. I could see from the look in his eyes in the ICU that he was terrified. I tried to tell him that he was getting better and that he was in the best ICU in the country for lung problems. He doesn't remember any of that. He has no recollection of his time at RMC at all. The only thing his does remember about RMC, was one of his guests and drinking Mucomyst (it smells and tastes like rotten eggs-it is taken before a test to protect the kidneys). Taste and smell can be very powerful memory enhancers.
He still has his sense of humor, the nurse asked, "where do you want your insulin shot?" His reply, "YOUR arm". We all laughed.
If you are wondering how his mental faculties are, he did the word Jumble in the Denver Post today! I needed help with it.
He was disappointed at missing Passover. I told him not to worry, we will have a Seder when he gets well.
He asked for a computer and he said he would try to write a few emails tomorrow.
The doctors' goals for the week are to convert to a nasal cannula and cap his Trach.
He says he wants to go home by the end of the week. I asked what will he do about stairs in the house. He said that he will be doing stairs by the end of the week. I hope so, but I believe he still needs to be able to sit before he can walk and before he can go up stairs! I know he is motivated and he often surpasses the goals set by the physicians. Go Big Mike!
Blood sugar
A patient may be given steroids to decrease inflammation. One of the side effects of steroid use is a raise in blood glucose (blood sugar). A patient who is pre-diabetic or is actually diabetic will show an increase in blood sugar. They will need insulin to counteract the raise in blood sugar.
When reading a lab report, check to see what the lab indicates as a normal blood sugar as the values vary slightly per facility.
It is important for such patients to have their A1C level checked every three months. This value indicates the amount of time a patient's blood glucose is above normal. A value >7 means that the patient's blood glucose is not controlled. According to the American Diabetes Association (ADA), blood sugar before eating should be between 70-130 mg/dl. It is important to manage blood sugar, as elevated blood glucose can cause to sever damage to the body. It can lead to blindness, neuropathy (nerve damage), kidney damage, etc...
Please check the ADA website for more information on Type 2 Diabetes.
After the patient finishes the course of steroids, they may still have Type 2 diabetes requiring medication. Some patients require insulin, others may do well on oral medication.
Fluctuations in blood sugar can cause behavior changes. Patients maybe cranky when their blood sugar is elevated or extremely low. Please check the ADA website for signs of hypoglycemia (low blood sugar) or hyperglycemia (elevated blood sugar).
The management of diabetes is a triangle. It demands a careful management of diet, exercise and insulin. Exercise can lower insulin requirements. A well managed diet may also reduce insulin requirements. A diabetic patient in the hospital with limited mobility will have increased insulin requirements.
The ADA website lists warning signs of Diabetes. Please see your doctor if you think you may be diabetic.
When reading a lab report, check to see what the lab indicates as a normal blood sugar as the values vary slightly per facility.
It is important for such patients to have their A1C level checked every three months. This value indicates the amount of time a patient's blood glucose is above normal. A value >7 means that the patient's blood glucose is not controlled. According to the American Diabetes Association (ADA), blood sugar before eating should be between 70-130 mg/dl. It is important to manage blood sugar, as elevated blood glucose can cause to sever damage to the body. It can lead to blindness, neuropathy (nerve damage), kidney damage, etc...
Please check the ADA website for more information on Type 2 Diabetes.
After the patient finishes the course of steroids, they may still have Type 2 diabetes requiring medication. Some patients require insulin, others may do well on oral medication.
Fluctuations in blood sugar can cause behavior changes. Patients maybe cranky when their blood sugar is elevated or extremely low. Please check the ADA website for signs of hypoglycemia (low blood sugar) or hyperglycemia (elevated blood sugar).
The management of diabetes is a triangle. It demands a careful management of diet, exercise and insulin. Exercise can lower insulin requirements. A well managed diet may also reduce insulin requirements. A diabetic patient in the hospital with limited mobility will have increased insulin requirements.
The ADA website lists warning signs of Diabetes. Please see your doctor if you think you may be diabetic.
Sunday, April 25, 2010
There is no place like home....
Today, Michael's brother, Yaakov came in from Baltimore. Yaakov, Michael and Will studied Mishna via phone. It is so nice to have Yaakov in town to keep an eye on Michael while I am not there. Yaakov taught Michael the sign language sign for HOME.
On Shabbat Michael tried to get out of bed without any help. That didn't work so well. Now there is an alarm on his bed to remind him that he needs help to move.
Michael asked for the Denver Post today. He and Yaakov discussed topics in the news.
Today I went around and annoyed the staff until they took care of Michael. He needed to have his tube feeding replenished. He needed Respiratory Therapy (RT) to allow Michael access to the suction wand. He needed to get up into a cardiac chair.
The doctor came in to talk to us today. Michael asked "When I can go home?" It is the number one question on his mind! The doctor seemed to think it would take a few more weeks before he could leave for a physical therapy facility like Spalding. The closest facility is one floor up. He said the Michael is progressing nicely. It is surely not fast enough for either of us.
On Shabbat Michael tried to get out of bed without any help. That didn't work so well. Now there is an alarm on his bed to remind him that he needs help to move.
Michael asked for the Denver Post today. He and Yaakov discussed topics in the news.
Today I went around and annoyed the staff until they took care of Michael. He needed to have his tube feeding replenished. He needed Respiratory Therapy (RT) to allow Michael access to the suction wand. He needed to get up into a cardiac chair.
The doctor came in to talk to us today. Michael asked "When I can go home?" It is the number one question on his mind! The doctor seemed to think it would take a few more weeks before he could leave for a physical therapy facility like Spalding. The closest facility is one floor up. He said the Michael is progressing nicely. It is surely not fast enough for either of us.
Saturday, April 24, 2010
Shabbat
After Shabbat I drove Aaron, Shoshana and Rebecca over to visit Michael. I called and spoke to his nurse who said Michael had a great day. (I think he might disagree with that). We got there around 9:45 PM.
The water that is used to humidify his oxygen was leaking and there was a large puddle on the floor. We informed the nurse of the problem and she changed out his bottle and hose. This cut out his oxygen for a bit so she turned up his settings (to give him more oxygen). I hope she remembers to turn the O2 down.
Upon arrival Aaron said Havdallah for his dad. I asked Michael what he did? He Davened (prayed). He got to sit up once today. He said he tried to get out of bed by himself, but had no luck. It is hard to get up with all the stuff that is attached to him.
He said he hasn't been given his eye drops in 2 days. He hadn't had any mouth care today and didn't get his night medicines (this discussion was @ 11 PM). I went to talk to the nurse. She came in and gave him his eye drops and left them in the room. They had been in the room previously and went missing. Yesterday the nurse on duty said she would put the eye drops in the pharmacy box with the rest of his medicines. She thought the eye drops had run out. There is no way they could have run out as he only needs one drop per eye and the container lasts for months. They just opened a bottle for him on Monday.
When I left at 11:30 PM I reminded the nurse to give him his medicines, and do his mouth care.
I am sure Michael would like to have guests on Shabbat as it is very lonely there for him. I will try to walk to PSL next Shabbat. I now know all the non electric ways to enter the building. I also have found the stairs so I can walk up to the 5th floor.
The water that is used to humidify his oxygen was leaking and there was a large puddle on the floor. We informed the nurse of the problem and she changed out his bottle and hose. This cut out his oxygen for a bit so she turned up his settings (to give him more oxygen). I hope she remembers to turn the O2 down.
Upon arrival Aaron said Havdallah for his dad. I asked Michael what he did? He Davened (prayed). He got to sit up once today. He said he tried to get out of bed by himself, but had no luck. It is hard to get up with all the stuff that is attached to him.
He said he hasn't been given his eye drops in 2 days. He hadn't had any mouth care today and didn't get his night medicines (this discussion was @ 11 PM). I went to talk to the nurse. She came in and gave him his eye drops and left them in the room. They had been in the room previously and went missing. Yesterday the nurse on duty said she would put the eye drops in the pharmacy box with the rest of his medicines. She thought the eye drops had run out. There is no way they could have run out as he only needs one drop per eye and the container lasts for months. They just opened a bottle for him on Monday.
When I left at 11:30 PM I reminded the nurse to give him his medicines, and do his mouth care.
I am sure Michael would like to have guests on Shabbat as it is very lonely there for him. I will try to walk to PSL next Shabbat. I now know all the non electric ways to enter the building. I also have found the stairs so I can walk up to the 5th floor.
Friday, April 23, 2010
Milestones
Today Michael got to sit up again. He practiced leaning forward (this takes abdominal muscles),and moving his hips so the he can move toward the back of the chair. Today was the first day since March 25 that his feet touched the floor!
He has stayed on the Trach collar for 48 hours at 50% oxygen. Once he progresses to 30%, (equal to room air), then he can progress to a nasal cannula!
He was in good spirits today, but indicates to everyone that he wants to go home!
We exercised his legs and arms today.
The Speech Therapist didn't come in today, so he didn't get shocked or any ice chips.
I brought him a Siddur or hopefully he can Daven on Shabbat. His attention span is still pretty short. I am sure it will improve once he is no longer on the sedatives.
Today he asked why he is getting Thyroid Hormone. I explained that his labs showed that he was hypothyroid. This is not unusual for someone in his condition.
He has stayed on the Trach collar for 48 hours at 50% oxygen. Once he progresses to 30%, (equal to room air), then he can progress to a nasal cannula!
He was in good spirits today, but indicates to everyone that he wants to go home!
We exercised his legs and arms today.
The Speech Therapist didn't come in today, so he didn't get shocked or any ice chips.
I brought him a Siddur or hopefully he can Daven on Shabbat. His attention span is still pretty short. I am sure it will improve once he is no longer on the sedatives.
Today he asked why he is getting Thyroid Hormone. I explained that his labs showed that he was hypothyroid. This is not unusual for someone in his condition.
Thursday, April 22, 2010
As easy as breathing
When I came in this morning Michael was reading a magazine and holding it with both hands. He was unable to use his right hand until today. He also wasn't able to lift his hands towards his face until today!
We played hangman. Today was the first day he was awake for most of the day. We joked around and I laughed.
He keeps asking, "when can I go home?" I tell him he has to be able to breathe and to sit up.
The lyrics to a song are "loving you is an easy as breathing". Until this experience, I thought that was a love song. Now that I see how difficult breathing is, I am not so sure.
We played hangman. Today was the first day he was awake for most of the day. We joked around and I laughed.
He keeps asking, "when can I go home?" I tell him he has to be able to breathe and to sit up.
The lyrics to a song are "loving you is an easy as breathing". Until this experience, I thought that was a love song. Now that I see how difficult breathing is, I am not so sure.
Trach Collar
Michael was able to stay on the Trach collar for 24 hours, we hope that he can continue this progress. He was still on the Trach collar when I left this evening and his O2 saturation was in the 90s, good job Michael! The plan is to keep him on the Trach collar as long as he can tolerate it.
Ice Chips
This afternoon Michael was moved to a cardiac chair (it is a bed which becomes a chair). He got to sit up for 45 minutes! While in the chair the speech therapist shaved his throat and then attached electrodes. She applied current and then asked Michael to swallow. This was done for 30 minutes. This procedure helps to reestablish swallowing.
One of the really exciting things that the Speech Therapist does is provide ice chips. Michael has not had any food or drink by mouth since March 25. Today he got to have 10 ice chips. The speech therapist gave him one ice chip per minute for 10 minutes. She explained that the lungs can handle 90cc of fluid at a neutral pH without developing aspiration pneumonia.
Mouth care is very important before having the ice chips. The mouth has a great deal of bacteria, this makes foods acidic. The lungs cannot tolerate acidity. She gave Michael his special tooth brush that has suction on it so no fluid will go in his lungs. He was able to use his right hand to brush his teeth. This is the first time he could brush his teeth!
One of the really exciting things that the Speech Therapist does is provide ice chips. Michael has not had any food or drink by mouth since March 25. Today he got to have 10 ice chips. The speech therapist gave him one ice chip per minute for 10 minutes. She explained that the lungs can handle 90cc of fluid at a neutral pH without developing aspiration pneumonia.
Mouth care is very important before having the ice chips. The mouth has a great deal of bacteria, this makes foods acidic. The lungs cannot tolerate acidity. She gave Michael his special tooth brush that has suction on it so no fluid will go in his lungs. He was able to use his right hand to brush his teeth. This is the first time he could brush his teeth!
Progress
Michael wrote his first word yesterday, Call.
Today he was very alert. He was very communicative this morning. We practiced some ALS (American Sign Language) He can sign A-E. He can now hold a magazine and shake hands. We did some exercises together and he is improving. He spent all night long on the Trach collar and his O2 saturation (sats) stayed in the 90s!
Today he was very alert. He was very communicative this morning. We practiced some ALS (American Sign Language) He can sign A-E. He can now hold a magazine and shake hands. We did some exercises together and he is improving. He spent all night long on the Trach collar and his O2 saturation (sats) stayed in the 90s!
Wednesday, April 21, 2010
Good Day
Michael was sleeping at 8PM, he was still on the Trach collar and his O2 saturation was very good. He missed his brothers' call as they didn't want to wake him. Hopefully, he will be up for Mishna tomorrow. All in all, I would say he had a good day. It is so nice to see progress.
Medication
It is so important to ask what medications a patient is getting.
Today, I noticed that the nurse replaced Michael's Fentanyl patch. I asked how many mcg is the patch for? She replied 100 mcg. I said that the doctor told me yesterday that Michael will continue his wean from this sedative and would get a new patch at 50 mcg. Why did he get this high dosage? She didn't know. Immediately I went to the doctor, (his desk is right outside Michael's door) and asked about the dosage. The doctor said that Michael's patch wasn't supposed to be changed until tomorrow and it should be 50 mcg. I said fine, but it was changed today and is 100 mcg. He was confused and said he would look into what happened. He came back to me and said that it was a computer error and tomorrow the patch would be replaced with the correct dosage.
Michael is sleeping a great deal. The nurse agreed that Michael is over sedated. Hopefully he will not have any trouble weaning from this drug and will continue to improve.
I also noticed that Michael's peripheral line dressing hasn't been changed since he arrived. The nurse thanked me for being observant and said the dressing would be changed.
Michael had a good morning. He was changed back to a Trach collar on 40% O2. He tolerated OT and PT well (his sats stayed in the 90s). If he continues to do well they will keep him on the Trach collar over night.
PT and OT came and he was able to sit for 4 minutes! Then he continued his arm and leg exercises lying down. He was able to participate by moving his limbs. He is much stronger than yesterday. He is still very weak and needed quite a bit of help to move his limbs, but he could move!
Today, I noticed that the nurse replaced Michael's Fentanyl patch. I asked how many mcg is the patch for? She replied 100 mcg. I said that the doctor told me yesterday that Michael will continue his wean from this sedative and would get a new patch at 50 mcg. Why did he get this high dosage? She didn't know. Immediately I went to the doctor, (his desk is right outside Michael's door) and asked about the dosage. The doctor said that Michael's patch wasn't supposed to be changed until tomorrow and it should be 50 mcg. I said fine, but it was changed today and is 100 mcg. He was confused and said he would look into what happened. He came back to me and said that it was a computer error and tomorrow the patch would be replaced with the correct dosage.
Michael is sleeping a great deal. The nurse agreed that Michael is over sedated. Hopefully he will not have any trouble weaning from this drug and will continue to improve.
I also noticed that Michael's peripheral line dressing hasn't been changed since he arrived. The nurse thanked me for being observant and said the dressing would be changed.
Michael had a good morning. He was changed back to a Trach collar on 40% O2. He tolerated OT and PT well (his sats stayed in the 90s). If he continues to do well they will keep him on the Trach collar over night.
PT and OT came and he was able to sit for 4 minutes! Then he continued his arm and leg exercises lying down. He was able to participate by moving his limbs. He is much stronger than yesterday. He is still very weak and needed quite a bit of help to move his limbs, but he could move!
Tuesday, April 20, 2010
Muscle and Lung Damage
One of the side effects of paralytics and steroids is damage to muscle tissue. Dr. Clark told me today that in many cases the damage can improve over time. He also said it was necessary to treat Michael with these drugs in order to give him a chance to survive. He said survival beats movement. Once you get passed the living part, you can try to fix the movement issues. If you don't get past the first barrier, the second is moot.
High levels of oxygen cause lung damage. The lungs need oxygen. It seems so ironic that O2 which is necessary for life can cause such damage.
In America, we believe more is better. We should change our thinking; just right is better. Sometimes more is not better, it is just more.
High levels of oxygen cause lung damage. The lungs need oxygen. It seems so ironic that O2 which is necessary for life can cause such damage.
In America, we believe more is better. We should change our thinking; just right is better. Sometimes more is not better, it is just more.
10 PM
I went back to the hospital at 10:15PM and stayed until he feel asleep. We held hands and he seemed comfortable. I know it is difficult to sleep with all the alarms going off, but he seems to be managing as best he can. The night staff seems to be attentive. The CNA was with him when I got there and the nurse checked in twice while I was there.
Itty Bitty Bed
Michael is over 6 feet tall and is too long for the normal hospital bed. Kudos to Select for getting him a longer bed!
The bed has a system of air sacs which inflate and deflate to relieve pressure on the patient's body. This system is very important for the bedridden.
The bed has a system of air sacs which inflate and deflate to relieve pressure on the patient's body. This system is very important for the bedridden.
Speech Therapy and the Dietitian
Today I met the Speech Therapist (ST), Traci. She put a speck of blue dye in Michael's mouth. The dye acts as an indicator of swallowing ability. If it comes out the Trach, the patient is not swallowing properly. If it doesn't show up, then the patient's swallow is intact. Patient's with an intact swallow can be progressed. Michael has blue dye coming out his Trach :(
Michael was very fatigued this morning. He appeared more awake this evening.
I worked with Michael to do some passive range of motion with his limbs.
I met with Danielle, the Registered Dietitian. We discussed Michael's current weight, his IBW, (ideal body weight), insulin requirement, tube feedings, nutritional requirements, gut motility. It was wonderful speaking to a fellow professional. We see eye to eye.
Michael was very fatigued this morning. He appeared more awake this evening.
I worked with Michael to do some passive range of motion with his limbs.
I met with Danielle, the Registered Dietitian. We discussed Michael's current weight, his IBW, (ideal body weight), insulin requirement, tube feedings, nutritional requirements, gut motility. It was wonderful speaking to a fellow professional. We see eye to eye.
Dissapointments and Setbacks
The Respiratory Therapist (RT) wants to change Trachs, as the one Michael has is too long for his airway causing discomfort and a great deal of coughing. The doctor who put it in was probably thrown off by the huge amount of swelling Michael had at the time of surgery.
The RT was able to decrease the cuff size on his Trach this morning. Michael was actually able to say a few words when his Trach was covered! Unfortunately, he couldn't tolerate the change and his cuff was fully inflated once again.
Dr. Clark, the Pulmonologist, came and spoke to us today. He spent an hour reviewing Michael's chart. He would like to provide us with a game plan. Right now, his plan is to go slow. Michael's sats (O2 saturation) were low this morning on the Trach collar, so he was changed back to the C-PAP. Dr. Clark thinks Michael is having difficulty breathing right now due to a fluid imbalance. They will increase his diuretics in hopes to create a dryer lung. They may take him for another lung CT.
The RT was able to decrease the cuff size on his Trach this morning. Michael was actually able to say a few words when his Trach was covered! Unfortunately, he couldn't tolerate the change and his cuff was fully inflated once again.
Dr. Clark, the Pulmonologist, came and spoke to us today. He spent an hour reviewing Michael's chart. He would like to provide us with a game plan. Right now, his plan is to go slow. Michael's sats (O2 saturation) were low this morning on the Trach collar, so he was changed back to the C-PAP. Dr. Clark thinks Michael is having difficulty breathing right now due to a fluid imbalance. They will increase his diuretics in hopes to create a dryer lung. They may take him for another lung CT.
Increased Oxygen Requirements
I was told that Michael did not sleep well last night. Michael indicated that everything was fine.
I had mentioned that yesterday the nurse at RMC gave him an additional sedative for transport and that possibly made him sleepy during the day. I am also wondering if RMC gave Select correct information on the amount of sedation he was getting there. This morning he seemed over sedated. When PT tried to sit him up his O2 (sats) quickly fell to the low 80s. He was dizzy, they had to let him lay down right away. They did try to assist him with movement of his arms and legs. After PT I noticed his sats stayed low 87-88. The alarm at Select is set much lower than the ICU which goes off at 88. The alarm started going off at 84, he actually fell to 82-83. I was very concerned. Staff came in and looked at him and then went to find equipment they needed to suction him. They didn't seem overly concerned. (I was freaking out-quietly on the inside). RT came and suctioned him and put him back on the C-PAP. His O2 requirements were higher than what he was doing well on yesterday. Last Night they got a sputum sample to culture. Michael has been off of antibiotics for 5 days, so he could easily have gotten an infection. My concern was that if his sats were low that he may be sick. They will also monitor temperature to look for fever. PT did reduce the size of the cuff on his trach. (A cuff is used to prevent O2 from leaking around the trach). The cuff size is reduced to let air flow around the Trach to slowly accustom the patient to regular breathing.
I had mentioned that yesterday the nurse at RMC gave him an additional sedative for transport and that possibly made him sleepy during the day. I am also wondering if RMC gave Select correct information on the amount of sedation he was getting there. This morning he seemed over sedated. When PT tried to sit him up his O2 (sats) quickly fell to the low 80s. He was dizzy, they had to let him lay down right away. They did try to assist him with movement of his arms and legs. After PT I noticed his sats stayed low 87-88. The alarm at Select is set much lower than the ICU which goes off at 88. The alarm started going off at 84, he actually fell to 82-83. I was very concerned. Staff came in and looked at him and then went to find equipment they needed to suction him. They didn't seem overly concerned. (I was freaking out-quietly on the inside). RT came and suctioned him and put him back on the C-PAP. His O2 requirements were higher than what he was doing well on yesterday. Last Night they got a sputum sample to culture. Michael has been off of antibiotics for 5 days, so he could easily have gotten an infection. My concern was that if his sats were low that he may be sick. They will also monitor temperature to look for fever. PT did reduce the size of the cuff on his trach. (A cuff is used to prevent O2 from leaking around the trach). The cuff size is reduced to let air flow around the Trach to slowly accustom the patient to regular breathing.
Monday, April 19, 2010
Michael is settling in
Michael is settling in at Select. He is just 2 floors up from the Bone marrow unit where he spent 3 weeks in 2006.
His nurse is very good at reading lips. She asked him; What day of the week is it? He answered Monday. Where are you? PSL Why are you here? Rehab. He answered all the questions correctly!
They seem to be taking good care of him.
Michael got to listen to most of the Mishna with his brothers tonight. He was tired and it was difficult for him to hear over the whoosh of O2 so he didn't get to hear all of it.
May he continue to recover quickly.
His nurse is very good at reading lips. She asked him; What day of the week is it? He answered Monday. Where are you? PSL Why are you here? Rehab. He answered all the questions correctly!
They seem to be taking good care of him.
Michael got to listen to most of the Mishna with his brothers tonight. He was tired and it was difficult for him to hear over the whoosh of O2 so he didn't get to hear all of it.
May he continue to recover quickly.
Michael transported to PSL
Michael was transported to Select-North (in PSL) this afternoon. They seem competent and caring. Michael's medical records didn't follow him to the new facility and they had to send someone to pick up the missing info. Michael's trip in the ambulance was uneventful. They did have emergency equipment in case it was needed, but Baruch HaShem, Michael's O2 was fine the whole trip.
I was at the new location to greet him. I drove there, parked and went up to the floor before Michael arrived. When he arrived they switched him to their monitors. Immediately his O2 saturation decreased radically (66). I told the CNA if your monitor is accurate; please get someone in here immediately to take care of him.
Michael didn't seem to be in distress, so the reading must have been wrong. Respiratory Therapy came right in and helped the nurses adjust his airflow. His sats stayed low so they replaced the Trach collar with the respirator. He immediately went to the low 90s. The RT said the monitor was incorrect; he wasn't in the 60's. (You will often see false readings if someone's finger is cold, etc.) Michael was allowed to rest awhile and when he was ready he was put back on the Trach collar. He will go back on C-PAP later this evening.
The wound care team saw him upon arrival to access his skin care. They noticed that Michael's feeding tube was super taped on. They said this should never be taped. They removed the tape, ouch, watch the hair! They cleaned the wound thoroughly.
The speech therapist will evaluate his ability to swallow and access his ability to down size his Trach, so he can talk!
I requested that the doctors will do a number of lab tests including Thyroid function. The blood tests will be done tomorrow. They will also x-ray him tomorrow to look to see how his lungs have progressed. They will also do some swallow tests.
The doctors and nurses desks are right outside Michael's room! I will always know where to find them. They cannot hide.
Michael continues to progress.
I do not know Michael's schedule for OT, PT, ST or when lab tests and x-rays will be preformed. If people do want to visit:
1. They must be healthy.
2. They must wash their hands.
3. They can only stay for a few minutes.
4. Children should not visit.
I was at the new location to greet him. I drove there, parked and went up to the floor before Michael arrived. When he arrived they switched him to their monitors. Immediately his O2 saturation decreased radically (66). I told the CNA if your monitor is accurate; please get someone in here immediately to take care of him.
Michael didn't seem to be in distress, so the reading must have been wrong. Respiratory Therapy came right in and helped the nurses adjust his airflow. His sats stayed low so they replaced the Trach collar with the respirator. He immediately went to the low 90s. The RT said the monitor was incorrect; he wasn't in the 60's. (You will often see false readings if someone's finger is cold, etc.) Michael was allowed to rest awhile and when he was ready he was put back on the Trach collar. He will go back on C-PAP later this evening.
The wound care team saw him upon arrival to access his skin care. They noticed that Michael's feeding tube was super taped on. They said this should never be taped. They removed the tape, ouch, watch the hair! They cleaned the wound thoroughly.
The speech therapist will evaluate his ability to swallow and access his ability to down size his Trach, so he can talk!
I requested that the doctors will do a number of lab tests including Thyroid function. The blood tests will be done tomorrow. They will also x-ray him tomorrow to look to see how his lungs have progressed. They will also do some swallow tests.
The doctors and nurses desks are right outside Michael's room! I will always know where to find them. They cannot hide.
Michael continues to progress.
I do not know Michael's schedule for OT, PT, ST or when lab tests and x-rays will be preformed. If people do want to visit:
1. They must be healthy.
2. They must wash their hands.
3. They can only stay for a few minutes.
4. Children should not visit.
Moving to another facility
Michael will move to Select at PSL this afternoon. Their job is to wean him from the ventilator and for PT and OT.
Michael sat up in a cardiac chair today. (It can be placed in a fully reclined position and can move to a sitting position, so the patient doesn't actually have to use muscle to sit up.) The chair was obviously made for someone much, much, shorter. He was very uncomfortable. His legs went well beyond the foot rest. They made him sit up for an hour and he was very unhappy. Oxygen wise he did great! He was just squished! Poor thing.
Michael will be transported by ambulance with a ventilator, cardiac monitor, his chart and all the CDs of his lab tests, X-rays, etc.
Michael sat up in a cardiac chair today. (It can be placed in a fully reclined position and can move to a sitting position, so the patient doesn't actually have to use muscle to sit up.) The chair was obviously made for someone much, much, shorter. He was very uncomfortable. His legs went well beyond the foot rest. They made him sit up for an hour and he was very unhappy. Oxygen wise he did great! He was just squished! Poor thing.
Michael will be transported by ambulance with a ventilator, cardiac monitor, his chart and all the CDs of his lab tests, X-rays, etc.
Eyes
Patients often keep their eyes open when they are unconscious and an ointment is put in the eyes to protect them from drying out. The problem with an ointment is that it makes vision difficult, everything appears blurry. This obviously isn't a problem while unconscious, however, it is a problem when the patient is awake. Michael has constant dry eye, it is a side effect of TBI (Total Body Irradiation). I have asked the doctor to stop the ointment for Michael and give him artificial tears instead.
Sunday Night
I spoke to Michael's nurse (Mike), at 10:43PM. Mike previously took care of Michael last week and he couldn't believe the improvement! Michael spent the day on the Trach collar with oxygen blowing into the opening in his neck, and is now back on the C-PAP @40% O2 5/5. This will allow him to rest during the evening. Breathing requires a great deal of energy. Mike shaved Michael! He is clean shaven, not even a mustache! I am glad he told me because I wouldn't recognize Michael when I arrive in the morning. I am not sure Michael realizes it is the Omer, it is hard for him to believe that Passover isn't coming up.
The goal for tomorrow morning is to have him up in a chair. This seems like such a small goal, but for Michael it is a giant step on the road to recovery. I brought in a ball to squeeze that Mrs. Mabo (Karen's mom) sent from Florida. Mike said Michael has been using it. He seems resistant to learning ALS (American Sign Language). I brought in a book and have tried to practice signs with him, but his mind is in too much of a fog from the extreme fatigue and high doses of sedative. He has tried to write but is not able to do that yet either. He can shake his head yes, or no, and he shrugs his shoulders (I don't know). When I ask him if he is comfortable or if he wants to be turned, he shrugs his shoulders.
The goal for tomorrow morning is to have him up in a chair. This seems like such a small goal, but for Michael it is a giant step on the road to recovery. I brought in a ball to squeeze that Mrs. Mabo (Karen's mom) sent from Florida. Mike said Michael has been using it. He seems resistant to learning ALS (American Sign Language). I brought in a book and have tried to practice signs with him, but his mind is in too much of a fog from the extreme fatigue and high doses of sedative. He has tried to write but is not able to do that yet either. He can shake his head yes, or no, and he shrugs his shoulders (I don't know). When I ask him if he is comfortable or if he wants to be turned, he shrugs his shoulders.
Sunday, April 18, 2010
Ready for acute rehab center
The doctors say that Michael is ready for the acute rehab center on Monday or Tuesday! He will be evaluated on Monday and will be transferred via ambulance as soon as a bed is available.
His sedatives were decreased this morning and he is comfortable.
He sat up again this morning and did some exercises lying down.
His O2 level is good and he is only on a Trach collar (air blowing at the Trach). He will be changed back to the C-PAP at night.
Good work Michael!
His sedatives were decreased this morning and he is comfortable.
He sat up again this morning and did some exercises lying down.
His O2 level is good and he is only on a Trach collar (air blowing at the Trach). He will be changed back to the C-PAP at night.
Good work Michael!
Denver Post: Apathy adds insult to injury
There was an article in the April 16, 2010 Denver Post titled Apathy adds insult to injury, about a hospital staff's failure to diagnose an injury on a boy who had difficulty communicating. It took 6 months before the doctors figured out that the boy had a broken femur (large bone in the leg)! The parents insisted that something was wrong, they asked for a bone scan, their pleas were ignored. They were persistent until they got a satisfactory answer as to why their son was in pain. This took 6 months!
It is so important for healthcare advocates to "go with their gut". Keep asking why isn't the patient improving? Go up the chain of command. If you do not see patient improvement, ask to speak to the "person in charge". That may differ depending on the setting. You may ask to speak to the nursing supervisor, the ombudsman, the physician in charge. Use resources in your community to get pull. Ask all your doctor friends for advice on which is the best hospital/ER/Treatment center, for the patient's illness/injury. The patient advocate is the difference between life and death.
Sometimes the patient refuses to seek help. It is the advocates job to encourage the patient not to give up. It is so important to seek for the right answer in patient care. As Michael says, "You can't be replaced, but maybe you can be repaired".
It is so important for healthcare advocates to "go with their gut". Keep asking why isn't the patient improving? Go up the chain of command. If you do not see patient improvement, ask to speak to the "person in charge". That may differ depending on the setting. You may ask to speak to the nursing supervisor, the ombudsman, the physician in charge. Use resources in your community to get pull. Ask all your doctor friends for advice on which is the best hospital/ER/Treatment center, for the patient's illness/injury. The patient advocate is the difference between life and death.
Sometimes the patient refuses to seek help. It is the advocates job to encourage the patient not to give up. It is so important to seek for the right answer in patient care. As Michael says, "You can't be replaced, but maybe you can be repaired".
After Shabbat
After Shabbat, I said Havdalah for Michael and his brothers called to study Mishna with him.
The nurse told me that for the first time Michael slept all night.
Michael was very tired from sitting up in the morning and from moving his arms and legs, but I think his fatigue may also be related to the amount of narcotics he is receiving.
I will ask the doctor if the narcotics can be reduced.
The nurse told me that for the first time Michael slept all night.
Michael was very tired from sitting up in the morning and from moving his arms and legs, but I think his fatigue may also be related to the amount of narcotics he is receiving.
I will ask the doctor if the narcotics can be reduced.
Living Will
It is so important to fill out a living will and keep a copy with you.
When Michael went to the doctor on March 23, 2010, he was immediately whisked to the hospital. We were told that he needed 1-2 days of IV antibiotics and some oxygen. Two days later he was intubated and put into a coma to allow his damaged lungs to heal. No one can ever imagine their loved one unconscious, on a ventilator with a feeding tube.
A living will indicates the measures which doctors can use to preserve your life. Michael filled one out in 2002 when he first got Leukemia.
Long before Michael and I married, we discussed living wills. I had worked in ICUs and CCUs in Michigan. I told Michael that I did not want to be kept alive intubated with a feeding tube. I had seen too many people clinging precariously to life with extreme measures. One such person was my brother. I told Michael, if G-d forbid, something terrible happens to me and there is no hope, just "pull the plug". Michael had a totally different perspective. He told me that he did want to be on life support, because the doctors would make him better, so right he is.
Part of the Living Will indicates directions for burial. Do yourself a favor and decide burial issues long before you will need them. Find a mortuary, cemetery, Jewish burial customs include, a plain pine box and the need for a Shomer. If you have a mortuary in mind they can easily help you when the time comes, because no one can handle making funeral arrangements during this time of great sadness.
When Michael went to the doctor on March 23, 2010, he was immediately whisked to the hospital. We were told that he needed 1-2 days of IV antibiotics and some oxygen. Two days later he was intubated and put into a coma to allow his damaged lungs to heal. No one can ever imagine their loved one unconscious, on a ventilator with a feeding tube.
A living will indicates the measures which doctors can use to preserve your life. Michael filled one out in 2002 when he first got Leukemia.
Long before Michael and I married, we discussed living wills. I had worked in ICUs and CCUs in Michigan. I told Michael that I did not want to be kept alive intubated with a feeding tube. I had seen too many people clinging precariously to life with extreme measures. One such person was my brother. I told Michael, if G-d forbid, something terrible happens to me and there is no hope, just "pull the plug". Michael had a totally different perspective. He told me that he did want to be on life support, because the doctors would make him better, so right he is.
Part of the Living Will indicates directions for burial. Do yourself a favor and decide burial issues long before you will need them. Find a mortuary, cemetery, Jewish burial customs include, a plain pine box and the need for a Shomer. If you have a mortuary in mind they can easily help you when the time comes, because no one can handle making funeral arrangements during this time of great sadness.
Medical Power of Attorney
Please think ahead. It is easy to fill out a medical power of attorney allowing a loved one to make choices for you, if you are unable to do so.
Will
Most attorneys will tell you to make a WILL once you have anything of worth. It is so important to fill out a Will once you have children. Do not leave this up to the court system! If your money is limited and you are worried about the cost of making a will, look on line, there are guidelines for making a will. If you have significant assets, take the time to talk to a Lawyer.
Medications
One very important thing to remember is to ask what medication the patient is getting. If you do not know what the medication is for, ask. Keep track of the medications the patient is given and learn how the medication is administered. Is it via IV, by mouth (medical term PO), is it sublingual (under the tongue), via inhaler, nebulizer, inter-muscular injection, subcutaneous injection...
Learn the dosage and the number of times per day (medical terms: bid 2x a day; tid 3x a day, qd = every day) the drug is administered.
If the patient is home, either memorize the telephone number of the local pharmacy or write it down where you can easily look it up. Learn where the nearest 24 hour pharmacy is and keep that number handy too.
Everyone should learn the names and dosages of their medications and what they treat. People should know what drugs should be taken together and what should be taken separately. For example if you take a diuretic for high blood pressure, you should also be on a Potassium supplement (K+), because diuretics leach out the bodies K+. If you stop taking the diuretic and should also stop the K+. K+ imbalance can lead to heart attack. Do not take Calcium and Iron together, they bind in the gut and are excreted, so the body does not absorb either one. Learn when you should eat when taking medications. Should you take a pill on a full stomach, or empty stomach?
Do not take your pills with OJ or any citrus beverages, they alter the uptake of many drugs. Take a drug with water or milk these are neutral pH and this is how the medication is formulated to work best.
The most reliable person to ask about medications is your pharmacist. If you have questions about side affects or any question in general, ask the professional!
The other day I noticed the nurse preparing to mash up Michael's medications in order to put them in the feeding tube. I told her that 2 of the pills are to be placed under the tongue. She looked up the method of administration and noticed that I was correct. She said it was a good thing I mentioned the method of pill administration because it wouldn't have worked if she had put it in the tube feeding. oops!
Learn the dosage and the number of times per day (medical terms: bid 2x a day; tid 3x a day, qd = every day) the drug is administered.
If the patient is home, either memorize the telephone number of the local pharmacy or write it down where you can easily look it up. Learn where the nearest 24 hour pharmacy is and keep that number handy too.
Everyone should learn the names and dosages of their medications and what they treat. People should know what drugs should be taken together and what should be taken separately. For example if you take a diuretic for high blood pressure, you should also be on a Potassium supplement (K+), because diuretics leach out the bodies K+. If you stop taking the diuretic and should also stop the K+. K+ imbalance can lead to heart attack. Do not take Calcium and Iron together, they bind in the gut and are excreted, so the body does not absorb either one. Learn when you should eat when taking medications. Should you take a pill on a full stomach, or empty stomach?
Do not take your pills with OJ or any citrus beverages, they alter the uptake of many drugs. Take a drug with water or milk these are neutral pH and this is how the medication is formulated to work best.
The most reliable person to ask about medications is your pharmacist. If you have questions about side affects or any question in general, ask the professional!
The other day I noticed the nurse preparing to mash up Michael's medications in order to put them in the feeding tube. I told her that 2 of the pills are to be placed under the tongue. She looked up the method of administration and noticed that I was correct. She said it was a good thing I mentioned the method of pill administration because it wouldn't have worked if she had put it in the tube feeding. oops!
Michael had a good Shabbat.
This morning when I walked into his room, Michael motioned, "When can I go home?" I told him that he isn't ready to go home yet. He was very disappointed. I told him that the doctors think that he will be ready for an acute rehab setting sometime next week. A nurse is scheduled on Monday to evaluated him for transfer. If he is deemed ready, he will transfer via ambulance by Wednesday. If he isn't ready she will have to return to reevaluate him. I told him the next facility would be very aggressive about PT and OT and weaning him from the vent. That seemed to console him.
He is doing great. He is now using the C-PAP at night. This morning he was put on the Trach collar from 6AM until 6PM! That means he was breathing on his own with 50% oxygen and then turned down to 40% O2!
Physical and Occupational Therapy (PT and OT) worked together to sit him up for 4 minutes. Then they laid him down and helped him with arm and leg exercises. That really tired him out. Not surprisingly his right arm was the weakest. While Michael was unconscious I could only do passive range of motion exercises on his left hand/arm and both legs. His right hand had an atrial line and it would start to bleed if I moved it. PT and OT were amazed that Michael had maintained flexibility and some strength. I told them about the medical journal article that I had showed the doctors concerning passive range of motion on patients on ventilators who were on paralytics. I told them that I had been working with his legs and left arm. The article says that it is important to start passive range of motion exercises ASAP. Patients who had this therapy while sedated recovered faster then patients who received no therapy. In the past medical personnel believed that it was important to let these very sick patients rest. They believed food and exercise caused stress upon the body and lengthened recovery time. We now know the reverse is true. It is so important to feed patients on high levels of O2 and exercise is also imperative to a return to health.
He is doing great. He is now using the C-PAP at night. This morning he was put on the Trach collar from 6AM until 6PM! That means he was breathing on his own with 50% oxygen and then turned down to 40% O2!
Physical and Occupational Therapy (PT and OT) worked together to sit him up for 4 minutes. Then they laid him down and helped him with arm and leg exercises. That really tired him out. Not surprisingly his right arm was the weakest. While Michael was unconscious I could only do passive range of motion exercises on his left hand/arm and both legs. His right hand had an atrial line and it would start to bleed if I moved it. PT and OT were amazed that Michael had maintained flexibility and some strength. I told them about the medical journal article that I had showed the doctors concerning passive range of motion on patients on ventilators who were on paralytics. I told them that I had been working with his legs and left arm. The article says that it is important to start passive range of motion exercises ASAP. Patients who had this therapy while sedated recovered faster then patients who received no therapy. In the past medical personnel believed that it was important to let these very sick patients rest. They believed food and exercise caused stress upon the body and lengthened recovery time. We now know the reverse is true. It is so important to feed patients on high levels of O2 and exercise is also imperative to a return to health.
Friday, April 16, 2010
Michael continues to progress.
He was assisted by 3 people today to sit up with his legs over the side of the bed. It took us three tries to get him up because he had difficulty breathing, but he did it!
He is currently on a C-PAP (he is breathing and when he doesn't take a breath, it breathes for him). Today he was fitted with a Trach collar and for an hour he was breathing on his own with air blowing in the Trach tube. This is a method of weaning him off the ventilator. He did great! He is still on high levels of sedative for pain, but he is able to communicate. He is very tired. They were going to help him sit up again before Shabbat.
He is currently on a C-PAP (he is breathing and when he doesn't take a breath, it breathes for him). Today he was fitted with a Trach collar and for an hour he was breathing on his own with air blowing in the Trach tube. This is a method of weaning him off the ventilator. He did great! He is still on high levels of sedative for pain, but he is able to communicate. He is very tired. They were going to help him sit up again before Shabbat.
My Email
If people would like to email me with comments about Michael, you can send your comments to barbara@schwartzcomputer.com .
Thursday, April 15, 2010
Michael had a great day.
He is more comfortable. He is breathing better. He was put on C-PAP for part of the day at only 50% oxygen and a pressure of 5! What a big change from 100% and a pressure of 18, which is the highest setting.
The doctors came in to look at him today and it is difficult to believe the improvement. They were amazed he survived! So far so good. Thanks for all the prayers, they have made such an amazing difference! He is not out of the woods yet, but he is certainly on his way. No one wants to speculate on how long this part of the recovery will take.
Today I got a call from the hospital at 2PM (during "quiet time"). The nurse said that Michael is fine, but he wanted me to come back to the hospital. When I returned I asked the nurse, "How did you know he wanted me?". She said, "It wasn't easy to figure out, but we did!"
May HaShem continue to help Chaim Michoel Yitachack ben Esther Vichna improve and may he warrant a speedy recovery!
The doctors came in to look at him today and it is difficult to believe the improvement. They were amazed he survived! So far so good. Thanks for all the prayers, they have made such an amazing difference! He is not out of the woods yet, but he is certainly on his way. No one wants to speculate on how long this part of the recovery will take.
Today I got a call from the hospital at 2PM (during "quiet time"). The nurse said that Michael is fine, but he wanted me to come back to the hospital. When I returned I asked the nurse, "How did you know he wanted me?". She said, "It wasn't easy to figure out, but we did!"
May HaShem continue to help Chaim Michoel Yitachack ben Esther Vichna improve and may he warrant a speedy recovery!
Thursday morning was so much better than yesterday!
It doesn't take much to make Michael comfortable. He wants to be moved in bed, he wants mouth care, (brush his teeth, mouthwash and Chapstick for his lips) and he wants his brow wiped. As soon as those needs were met, he was so much more comfortable!
We are trying to communicate today. I have added Kiss and I Love you to his wordlist. He just needs to point to the word and then I know what he wants. Today he was trying to make me understand something (it looked like trying to make a horse gallop to me). I said "you want to ride a horse?" The look on his face was so funny. He just threw up his hands and rolled his eyes! Eventually, I figured out he wanted his brow wiped. Today I gave him the control to call the nurse and with a bit of struggling he was able to press the button!
Keep up the good work Michael!
The docs think Michael will be able to move to an acute care long term facility next week. I have been checking out places nearby. He requires a place that can wean him from the ventilator which also does aggressive Physical Therapy. Luckily we have some very qualified places nearby.
This afternoon they will try to wean him completely from one of his sedatives.
We are trying to communicate today. I have added Kiss and I Love you to his wordlist. He just needs to point to the word and then I know what he wants. Today he was trying to make me understand something (it looked like trying to make a horse gallop to me). I said "you want to ride a horse?" The look on his face was so funny. He just threw up his hands and rolled his eyes! Eventually, I figured out he wanted his brow wiped. Today I gave him the control to call the nurse and with a bit of struggling he was able to press the button!
Keep up the good work Michael!
The docs think Michael will be able to move to an acute care long term facility next week. I have been checking out places nearby. He requires a place that can wean him from the ventilator which also does aggressive Physical Therapy. Luckily we have some very qualified places nearby.
This afternoon they will try to wean him completely from one of his sedatives.
Michael's status at 11PM
The nurses where able to move Michael so that he is now more comfortable! They cleaned out his mouth pretty throughly and now he is much more calm.
ME TOO
I called the floor on Wednesday evening. They figured out why Michael was so uncomfortable! He was sitting on one of his lines. Once they moved him he felt better and there was improved flow through the line! He continued to do well during the night.
All I asked on Wednesday was for him to be moved, I glad someone listened.
ME TOO
I called the floor on Wednesday evening. They figured out why Michael was so uncomfortable! He was sitting on one of his lines. Once they moved him he felt better and there was improved flow through the line! He continued to do well during the night.
All I asked on Wednesday was for him to be moved, I glad someone listened.
Wednesday, April 14, 2010
Terrifying Day
I have been through a lot with Michael over the past 8 years, but today was probably the most terrifying day of my life. I understand that weaning from the drugs Michael is on, is very difficult, but I was not prepared to see him in such pain, such fear and seeing how uncomfortable as he was today. The nurse & I just didn't get along. I wanted her to change Michael's position, provide mouth care for him and keep him comfortable. She made herself scarce. I had to get other nurses to help me with Michael's care. At one time during the day the nurse had the bed on rotation. (It moved from side to side. She failed to make sure that there was sufficient slack in Michael's line attached to the Trach.) The Trach became dislodged from the vent! I called for help. Many of the staff came running, not his nurse.
I spent the day providing mouth care, washing him with a washcloth, moving him and trying to explain to him how to communicate. His alarms were going off all day. I am home now, but in the back of my mind I can still hear that sound.
Michael continues to progress as expected. Now is the time to select an Acute Care facility which specializes in helping patients wean from the vent. I visited one location yesterday and one today. I was told to check out each place during both the day and night shifts.
I keep falling asleep, so I am off to bed.
I spent the day providing mouth care, washing him with a washcloth, moving him and trying to explain to him how to communicate. His alarms were going off all day. I am home now, but in the back of my mind I can still hear that sound.
Michael continues to progress as expected. Now is the time to select an Acute Care facility which specializes in helping patients wean from the vent. I visited one location yesterday and one today. I was told to check out each place during both the day and night shifts.
I keep falling asleep, so I am off to bed.
Physical Therapy
I have been fighting for Michael to receive physical therapy (PT) since the day he arrived in ICU. I brought in recent medical journal articles on the importance of range of motion PT in patients who are unconscious. The article stressed that patients who were unconscious, who received PT, had a decreased amount of neuropathy. Initially the doctors ignored me, they said that patients get PT when they go on to an acute rehab facility. They were aware of the literature, but the hospital doesn't have PT who work with patients who are unconscious. They will only work with patients who can participate in their PT. Every day during rounds, I would mention the importance of nutrition and PT. The dietitian supported my view of nutrition and he has received nutrition during most of his stay. I have a friend who has pull at the hospital. He put me in contact with the head of nursing. As soon as the head of nursing became involved Michael's care greatly improved. People starting listening to my concerns about Michael's care. I mentioned the article to the head of nursing. I mentioned the article to nursing. One of the nurses spoke to me about sending her children to day school. She asked if she could pass the article along to PT. PT was really excited about medical journal support of their work. The doctor in charge of the ICU changes each week. When Dr. Michael Schwartz, MD came aboard, he agreed to order nutrition and PT for Michael. He acknowledged that the hospital doesn't do PT on unconscious patients, however someone from PT would show me what to do and I could work with Michael. I had been moving Michael's hands and feet every day, but was encouraged that PT would show me correct Passive Range of Motion techniques. The PT who showed me what to work on acknowledged that Michael was still very flexible. Baruch HaShem! On Tuesday when Michael was somewhat conscious, I asked him to move his hand or feet and he was able to help me with his PT! GO Michael!
Tuesday, April 13, 2010
Michael continues to progress.
The doctors told me today that Michael was the sickest person that they have seen who has survived H1N1. They continue to wean him off the sedation and his need for the ventilator is decreasing.
Today he opened his eyes for me. He was able to nod yes or no. He can wiggle his toes and move his arms and shoulders. He is very frustrated because he isn't strong enough to move his upper body and he can't speak. His blood pressure rises when he is agitated and I do try to get him to relax. Better said than done.
I am now going to acute long term care sites in Denver to evaluate if they can take good care of Michael. He will probably go to an acute hospital which takes care of respiratory patients. The current expectations are up to 2 more weeks in ICU, then transfer to acute care for 5 weeks until weaned from vent. Possible a rehab facility after that. If everything continues to improve we are looking at about 3 months of care.
I can't wait until he can come home!
Yaakov and Will called tonight and I held up the phone to Michael's ear so that the brothers were able to study Mishna.
Today he opened his eyes for me. He was able to nod yes or no. He can wiggle his toes and move his arms and shoulders. He is very frustrated because he isn't strong enough to move his upper body and he can't speak. His blood pressure rises when he is agitated and I do try to get him to relax. Better said than done.
I am now going to acute long term care sites in Denver to evaluate if they can take good care of Michael. He will probably go to an acute hospital which takes care of respiratory patients. The current expectations are up to 2 more weeks in ICU, then transfer to acute care for 5 weeks until weaned from vent. Possible a rehab facility after that. If everything continues to improve we are looking at about 3 months of care.
I can't wait until he can come home!
Yaakov and Will called tonight and I held up the phone to Michael's ear so that the brothers were able to study Mishna.
Information
It behoves the caregiver to be informed as possible about their loved ones condition. Patients recovery more quickly if they and their caregiver understand what is happening to them.
Request daily labs, (learn what the labs mean - Rocky Mountain Cancer Center gives classes on understand labs, you can also ask friends who are doctors to help you understand the labs, ask the nurses to explain results to you), ask the nurse what medications they are administering. If you do not know what the medication is for, ask.
Look on the internet about your loved one's illness. There are different levels of description for every illness. The best descriptions are given at the physician level. If you do not understand the words, ask a doctor friend or the patient's doctor.
Keep track of everything. Make your own chart of your loved one.
Write down questions that you want to ask the doctor/nurse and write down the professionals' responses. You have to write down your questions, because believe me, you never remember all the questions when you see the doctor!
Request daily labs, (learn what the labs mean - Rocky Mountain Cancer Center gives classes on understand labs, you can also ask friends who are doctors to help you understand the labs, ask the nurses to explain results to you), ask the nurse what medications they are administering. If you do not know what the medication is for, ask.
Look on the internet about your loved one's illness. There are different levels of description for every illness. The best descriptions are given at the physician level. If you do not understand the words, ask a doctor friend or the patient's doctor.
Keep track of everything. Make your own chart of your loved one.
Write down questions that you want to ask the doctor/nurse and write down the professionals' responses. You have to write down your questions, because believe me, you never remember all the questions when you see the doctor!
Rounds
The best way to find out what is happening with a patient is to be attend rounds. During rounds all the relevant staff get together (Pulmonology, dietary, pharmacy, infectious disease, respiratory therapy, occupational therapy, oncology etc.) and discuss the patient's status and current plan for treatment. A family member can ask questions during this time. If one does not have the medical background to understand what is being said they can ask the doctor to return to explain patient care after he/she finishes rounds.
It is very important to keep a positive attitude.
Every morning when I return to the hospital, I greet Michael with a good morning. All though the day I remind him that he is getting better and that he has to get better. I tell him that he is in the best place for recovery. The ICU that he is in is part of the National Jewish System. National Jewish is considered the top Respiratory Hospital in the Country. The only problem is that we are at the altitude of 5,280 feet, which isn't great for patients with acute respiratory illnesses. Most importantly, I tell him constantly that I love him.
Visiting hours for the ICU end at 7PM, but I am in contact with the hospital during the night and early morning, and am given frequent updates on his condition.
The hospital policy of making the family leave at 1-2:30PM and then again at 7PM, is very difficult for me. I want to be with him all the time. I understand it is necessary so that I will eat and get some rest. When I return in the morning the staff always asks how I am doing and asks if I have gotten any rest. They are very kind.
Visiting hours for the ICU end at 7PM, but I am in contact with the hospital during the night and early morning, and am given frequent updates on his condition.
The hospital policy of making the family leave at 1-2:30PM and then again at 7PM, is very difficult for me. I want to be with him all the time. I understand it is necessary so that I will eat and get some rest. When I return in the morning the staff always asks how I am doing and asks if I have gotten any rest. They are very kind.
Monday, April 12, 2010
Who can be a patient care advocate in the hospital?
A patient care advocate is a person who speaks on behalf of the patient and insures the best possible care.
It is very difficult to see a loved one in the hospital especially in an Intensive Care setting. It is extremely difficult for a child (no matter the age) to see a parent so vulnerable and helpless.
I have been told that a patient gets better care if a loved one oversees the care of their family member. I have seen this first hand.
What happens in a situation when there is no family nearby, can friends act as the patient advocate? I believe that family has a special bond. While friends can support the caregiver, I think it is imperative for family to interact with the patient. It makes a world of difference.
It is very difficult to see a loved one in the hospital especially in an Intensive Care setting. It is extremely difficult for a child (no matter the age) to see a parent so vulnerable and helpless.
I have been told that a patient gets better care if a loved one oversees the care of their family member. I have seen this first hand.
What happens in a situation when there is no family nearby, can friends act as the patient advocate? I believe that family has a special bond. While friends can support the caregiver, I think it is imperative for family to interact with the patient. It makes a world of difference.
Michael continues to progress.
Michael continues to progress. His nitric oxide was discontinued today and his sedatives were decreased this required him to be on a greater level of oxygen. All and all this was a step forward. He now opens his eyes when someone speaks. He is able to move his shoulders and arms, though he is very weak.
Michael's youngest brother, Will, came in from NJ. He was such a big help. Will stayed with Michael and encouraged him. I got some time away from the ICU to decompress. Michael and his two brothers have been studying Mishna every night by phone since Michael first got sick in 2002. Will was able to study Mishna last night and today with Michael. Yaakov was able to join them last night.
It is very difficult seeing Michael struggle like this, but it is nice to see some progress.
Michael's youngest brother, Will, came in from NJ. He was such a big help. Will stayed with Michael and encouraged him. I got some time away from the ICU to decompress. Michael and his two brothers have been studying Mishna every night by phone since Michael first got sick in 2002. Will was able to study Mishna last night and today with Michael. Yaakov was able to join them last night.
It is very difficult seeing Michael struggle like this, but it is nice to see some progress.
Is Michael's illness cancer related?
I know everyone is wondering if Michael's illness is cancer related. The doctors have checked and there is no evidence of cancer at this time. Michael received all his childhood immunity shots in 2008 and is up to date with his vaccines. He had the Snoopy bandage to prove it! His bone marrow doesn't have the immunity of an adult. Many adults were exposed to swine flu in the 70s, providing minimal protection against H1N1. His immature bone marrow never was exposed to it. This infection should provide good protection against H1N1 in the future. He was not able to get the flu shot or H1N1 shot this year due to previous reactions. Going forward he will get a series of vaccines to decrease the chance of developing influenza in the future.
Michael's brother, Will
Michael's brother, Will came in to visit and he has been so helpful. Will stayed with Michael Sunday afternoon so I was able to get some errands done. It seems like Michael progressed by having family near and it was a real stress reducer for me having someone else watching out for Big Chaim/Mike. Michael and Will and brother Yaakov in Baltimore got to continue their Mishna studies on Sunday. Will held up the phone for Michael to hear.
Sunday, April 11, 2010
Michael's ventilator
Michael's ventilator wasn't working correctly so they changed it for a, hopefully, working one. It took two people to change the machine and one person to keep Michael on oxygen.
Saturday, April 10, 2010
Michael continues to slowly improve.
He has been removed from the paralytics. He is tolerating his nourishment via feeding tube. He is heavily sedated, but he is able to move his arms and toes. I have continued his physical therapy, moving his legs and one arm. His right arm has too many tubes and I don't want to cause him to bleed. His oxygen requirements have decreased. He is moving slowly in the right direction.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Friday, April 9, 2010
Stable This Morning
Michael is stable this morning. They are able to decrease the amount of sedative and paralytic.
Thursday, April 8, 2010
Procedures Went Well
The surgery to place a tracheotomy and feeding tube went well. After the surgery the doctors came out smiling. He is slowly gaining ground.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Note from Bonfils Blood Center
Barbara,
I am very sorry to hear that a loved one is in the ICU and I very much appreciate you encouraging friends and family to donate blood with Bonfils Blood Center in his honor.
I wanted to follow up to inquire if you would like to set up a group number to track the donations made in his honor. As a non-profit community-based blood center, we are unable to provide credits for blood for donations made in honor of someone but we do recognize the significance such donations can make on a blood recipient as friends and family rally around to offer support. If you do not find a need to track donations made in Michael’s honor, our staff should have cards available at the time of registration that the donor can fill out and send to the person of whom they are donating in honor.
Please let me know if there is anything else I can do to assist you.
Sincerely,
Steven Moore
Manager, Customer Care
Bonfils Blood Center
717 Yosemite St.
Denver, CO 80230
Direct: 303.363.2433
Fax: 303.739.3088
www.bonfils.org
Advancing healthcare. Saving Lives.
I am very sorry to hear that a loved one is in the ICU and I very much appreciate you encouraging friends and family to donate blood with Bonfils Blood Center in his honor.
I wanted to follow up to inquire if you would like to set up a group number to track the donations made in his honor. As a non-profit community-based blood center, we are unable to provide credits for blood for donations made in honor of someone but we do recognize the significance such donations can make on a blood recipient as friends and family rally around to offer support. If you do not find a need to track donations made in Michael’s honor, our staff should have cards available at the time of registration that the donor can fill out and send to the person of whom they are donating in honor.
Please let me know if there is anything else I can do to assist you.
Sincerely,
Steven Moore
Manager, Customer Care
Bonfils Blood Center
717 Yosemite St.
Denver, CO 80230
Direct: 303.363.2433
Fax: 303.739.3088
www.bonfils.org
Advancing healthcare. Saving Lives.
Wednesday, April 7, 2010
Advice Requested for Intubation or Tracheotomy
If you have any experience with a loved one who has gone through intubation or a tracheotomy, I would appreciate any advice or insights you might have for me. Please click on "comments" just under this posting and give your input. Thank you.
NO2 and Relenza
They are giving Michael NO2 through the ventilator in order to try to open the air sacs in his lungs. Thursday is his last day of the drug Relenza which is supposed to kill the H1N1, lab findings show he still has H1N1.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Blood Donations
Many people are asking for ways to help out... Blood donations would be helpful. Please contact Belle Bonfils to schedule an appointment. Their website is https://www.bonfils.org/DonorPortal/Welcome.aspx or call 303-363-2300.
1 blood donation can save up to 3 lives.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
1 blood donation can save up to 3 lives.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Surgery Postponed
The surgery has been postponed until tomorrow. They are giving him a transfusion today.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Please continue to say tehillim as much as possible.
No visitors are allowed to see Michael at this time.
Feeding Tube
The nurses were able to place a Dobhoff feeding tube on Tuesday and able to give him nutrition until this morning (Wednesday). He is now NPO (nothing by mouth) in preparation for his surgery today to place the tracheotomy and new feeding tube.
Feeding tube wise he has had an NG (nasogastric-tube through his nose). That was pulled to avoid damage to his nose. His second feeding tube was an oral gastric tube (in his mouth). He did not tolerate the feedings this way, so they were stopped. The first Dobhoff had to be pulled in order to conduct testing on his heart on Tuesday. On Tuesday a small Aortic aneurysm was found. The Cardiologist is not concerned, he just said to keep Michael's blood pressure normalized and keep an eye on him. It is too small for surgery.
This morning around 2 AM Michael's oxygenation dropped so they had to increase his oxygen level, now they are trying to drop it down again.
No visitors are allowed to see Michael at this time.
Feeding tube wise he has had an NG (nasogastric-tube through his nose). That was pulled to avoid damage to his nose. His second feeding tube was an oral gastric tube (in his mouth). He did not tolerate the feedings this way, so they were stopped. The first Dobhoff had to be pulled in order to conduct testing on his heart on Tuesday. On Tuesday a small Aortic aneurysm was found. The Cardiologist is not concerned, he just said to keep Michael's blood pressure normalized and keep an eye on him. It is too small for surgery.
This morning around 2 AM Michael's oxygenation dropped so they had to increase his oxygen level, now they are trying to drop it down again.
No visitors are allowed to see Michael at this time.
Tuesday, April 6, 2010
Tehillim Needed for Tracheotomy
Michael showed some progress today!
The surgeon plans on doing the tracheotomy Wednesday at 4:30PM. I would be so grateful if people said Tehillim. The Tehillim made such a big difference for his procedure last week.
They were able to decrease his oxygen level. They are now giving him NO2 (Nitrogen to help over the air sacs in his lungs). He is still on the paralytic, because he is fighting the ventilator when not on it. He is still heavily sedated. The surgeon was not able to do the tracheotomy today due to all the swelling in Michael's neck. The doctors hope Michael will have improved enough that they can operate Wednesday at 4:30 PM. Please say Tehillim for him, it helped so much during the last procedure.
No visitors are allowed to see Michael at this time.
The surgeon plans on doing the tracheotomy Wednesday at 4:30PM. I would be so grateful if people said Tehillim. The Tehillim made such a big difference for his procedure last week.
They were able to decrease his oxygen level. They are now giving him NO2 (Nitrogen to help over the air sacs in his lungs). He is still on the paralytic, because he is fighting the ventilator when not on it. He is still heavily sedated. The surgeon was not able to do the tracheotomy today due to all the swelling in Michael's neck. The doctors hope Michael will have improved enough that they can operate Wednesday at 4:30 PM. Please say Tehillim for him, it helped so much during the last procedure.
No visitors are allowed to see Michael at this time.
Other Organs Are Working
Michael did not do well when they took off the paralytic, so they put him back on it immediately.
He has pulmonary acidosis.
He has Acute Respiratory Distress Syndrome, H1N1 and pneumonia. The good news is that all his other organs are working!
No visitors are allowed to see Michael at this time.
He has pulmonary acidosis.
He has Acute Respiratory Distress Syndrome, H1N1 and pneumonia. The good news is that all his other organs are working!
No visitors are allowed to see Michael at this time.
Sunday, April 4, 2010
Removed from Paralytic
They removed Michael from the paralytic this morning. The doctors will see if he can tolerate the change. He looks very swollen from the interstitial air, but I am told that it is a benign condition.
He got the Relenza at 1 AM (anti H1N1 medicine).
I am seeing incremental improvements.
No visitors are allowed to see Michael at this time.
He got the Relenza at 1 AM (anti H1N1 medicine).
I am seeing incremental improvements.
No visitors are allowed to see Michael at this time.
Neuropathy
On Shabbat the doctor told me that Michael may have some neuropathy due to the medication he is on. When he gets well he will not return to a floor, he will be sent to rehabilitation.
Michael showed a bit of improvement on Shabbat April 3. The docs said to look for incremental improvements.
No visitors are allowed to see Michael at this time.
Michael showed a bit of improvement on Shabbat April 3. The docs said to look for incremental improvements.
No visitors are allowed to see Michael at this time.
Procedure Went Well
The Bronchoscopy went well on Friday April 1. The FDA and CDC gave permission for Michael to be given Relenza to treat his H1N1 on compassionate grounds as all other medication have failed. He will hopefully get his first dose around midnight 4-4-2010.
Friday, April 2, 2010
Initial Diagnosis
Michael is still in Intensive Care, No visitors are allowed to see Michael at this time. He has H1N1 and pneumonia
He is was placed on a ventilator on March 25 and heavily sedated. The doctors thought that this would allow the lungs to rest and heal.
On April 1 he was placed on medication to paralyze him in hopes that would decrease the intense coughing.
He is was placed on a ventilator on March 25 and heavily sedated. The doctors thought that this would allow the lungs to rest and heal.
On April 1 he was placed on medication to paralyze him in hopes that would decrease the intense coughing.
No Visitors
No one can visit Michael.
If you would like to visit Barbara, do not come to the hospital if you are sick.
During Shabbat or Yontiff, Barbara can be found in the 2nd floor
ICU waiting room 1:00 pm - 2:30 pm and 7:00 pm - 8:00 pm.
If you would like to visit Barbara, do not come to the hospital if you are sick.
During Shabbat or Yontiff, Barbara can be found in the 2nd floor
ICU waiting room 1:00 pm - 2:30 pm and 7:00 pm - 8:00 pm.
The best way to help is to say tehillim or to gather groups to
say tehillim.