We seem to be heading in the right direction finally. Jeff had a good day again. This morning when my parents were visiting he sat up for 45 minutes to 1 hour. He is now on a mechanical soft diet. This is a diet of very soft food. Pasta, mashed potatoes, casseroles, ground meats, and soft vegetables. He had a mashed potatoes and chicken casserole for lunch. His nurse said that he did not eat much but she feels like because he is receiving tube feedings that his belly is full and he is not hungry. She has suggested to the doctor that during the day the tube feeding be suspended and he might actually be hungry. When I was able to go after school to see him he sat up for 2 hours. He ate a little of the supper he ordered.
The rehab hospital has a bed for him but his pulmonologist still is not ready for him to go. Jeff's social worker at the hospital called me while I was driving to the hospital and said that Jeff's doctor wanted to discuss his concerns with me. He is supposed to call me in the morning so we can discuss his concerns. I told her if the doctor had concerns about sending him to rehab then I had concerns also. I am leaving the decision up to the doctor. The social worker told me that next week there may not be a bed for Jeff at the rehab hospital.
Friday, September 19, 2008
December 10- Day 90
UPDATE- MONDAY EVENING 12/10
Jeff had another good day. He got his speaking valve for his trach and can now talk when he needs to. The speech pathologist also did a swallow study and Jeff is now getting clear liquids again. He is only allowed sips and someone needs to be present when he is drinking to monitor his breathing. Jeff will not be going to rehab tomorrow as he had hoped. The pulmonologist wants him to be stronger before he sends him. He did get bummed out when he found out he would not be going as soon has he had hoped.
Jeff is having some problem with his tube feedings. They are not able to get him up the the goal rate. He gets nauseous when they get to the higher levels. They switched his tube feeding today to a formula with more protein and calories with less volume. They think this will help with the nausea.
Jeff had another good day. He got his speaking valve for his trach and can now talk when he needs to. The speech pathologist also did a swallow study and Jeff is now getting clear liquids again. He is only allowed sips and someone needs to be present when he is drinking to monitor his breathing. Jeff will not be going to rehab tomorrow as he had hoped. The pulmonologist wants him to be stronger before he sends him. He did get bummed out when he found out he would not be going as soon has he had hoped.
Jeff is having some problem with his tube feedings. They are not able to get him up the the goal rate. He gets nauseous when they get to the higher levels. They switched his tube feeding today to a formula with more protein and calories with less volume. They think this will help with the nausea.
December 8- day88
UPDATE- SATURDAY EVENING 12/8
Today was another good day for Jeff. He was able to write today and it was legible. He has tried to write in the past and no one could read it. We played tic-tac-toe and hang man. The nurse said that it would be good for his fine motor skills to write as much as possible. He was off the ventilator for about 13 hours today. The respiratory tech said that each day they would increase the number of hours off the ventilator and use the trach mask. Jeff realizes how long he has been in teh hospital but he does not remember most of it. Nurses would stop by to speak to him and he would ask me if they had been his nurse.
He is very anxious to go to rehab and keeps asking how long he will have to be in rehab. I keep telling him to take it one day at a time. He has not lost his faith. He wants people to pray with him. He is not angry. He has not asked why me? He is an incredible person.
Today was another good day for Jeff. He was able to write today and it was legible. He has tried to write in the past and no one could read it. We played tic-tac-toe and hang man. The nurse said that it would be good for his fine motor skills to write as much as possible. He was off the ventilator for about 13 hours today. The respiratory tech said that each day they would increase the number of hours off the ventilator and use the trach mask. Jeff realizes how long he has been in teh hospital but he does not remember most of it. Nurses would stop by to speak to him and he would ask me if they had been his nurse.
He is very anxious to go to rehab and keeps asking how long he will have to be in rehab. I keep telling him to take it one day at a time. He has not lost his faith. He wants people to pray with him. He is not angry. He has not asked why me? He is an incredible person.
December 7- day 87
UPDATE- FRIDAY EVENING 12/7
Today was another good day for Jeff. The cardiologist, the infectious disease doctor, and the surgeon have given their approval for him to go to rehab. The pulmonologist is the only one left to give approval. He is not on board with the rest of the doctors. Dr. Cervoni wants to make sure that Jeff's breathing is ok and that he gains some strength before he goes to rehab. I agree with Dr. Cervoni. I want Jeff in rehab but I want him stronger before he goes. At Select he will not be on monitors and that part scares me just a bit.
It amazes me how quickly the ICU psychosis went away. He is very coherent now. His mind is very clear. When he was so delusional it was very difficult to see but I had to stay with him as much as possible. He is resting very well so he is no longer sleep deprived.
Today was another good day for Jeff. The cardiologist, the infectious disease doctor, and the surgeon have given their approval for him to go to rehab. The pulmonologist is the only one left to give approval. He is not on board with the rest of the doctors. Dr. Cervoni wants to make sure that Jeff's breathing is ok and that he gains some strength before he goes to rehab. I agree with Dr. Cervoni. I want Jeff in rehab but I want him stronger before he goes. At Select he will not be on monitors and that part scares me just a bit.
It amazes me how quickly the ICU psychosis went away. He is very coherent now. His mind is very clear. When he was so delusional it was very difficult to see but I had to stay with him as much as possible. He is resting very well so he is no longer sleep deprived.
December 6- day 86
UPDATE THURSDAY EVENING 12/6
Today was better for Jeff than yesterday. His spirits were better. Our pastor went this morning to visit him, then my parents went for a large portion of the day, after they left another pastor friend of ours went to see him. I went after school and then after I left one of his best friends from church went to visit him.
Jeff did well with his therapy today. He sat on the side of the bed and did leg lifts. He did all of this with no support after they helped him sit up. He is also gaining strength in his arms daily.
The nurse said that possibly he could go to rehab as early as Monday but after I left tonight he aspirated again. Luckily this time he did not stop breathing. The nurse suctioned his stomach and shut off his tube feedings for the night. She said that she was going to start them back at 4 am. I am afraid that he will not go to rehab next week. I know that he wants to go there so he can get home sooner, however I do not want him to go if he is not ready. Before I left tonight I prayed with him and asked God that if Jeff was ready to go to rehab then open the doors and allow him to go. Pray that he will stop aspirating and get to rehab soon. He is so anxious to get there so he will be able to come home soon.
Today was better for Jeff than yesterday. His spirits were better. Our pastor went this morning to visit him, then my parents went for a large portion of the day, after they left another pastor friend of ours went to see him. I went after school and then after I left one of his best friends from church went to visit him.
Jeff did well with his therapy today. He sat on the side of the bed and did leg lifts. He did all of this with no support after they helped him sit up. He is also gaining strength in his arms daily.
The nurse said that possibly he could go to rehab as early as Monday but after I left tonight he aspirated again. Luckily this time he did not stop breathing. The nurse suctioned his stomach and shut off his tube feedings for the night. She said that she was going to start them back at 4 am. I am afraid that he will not go to rehab next week. I know that he wants to go there so he can get home sooner, however I do not want him to go if he is not ready. Before I left tonight I prayed with him and asked God that if Jeff was ready to go to rehab then open the doors and allow him to go. Pray that he will stop aspirating and get to rehab soon. He is so anxious to get there so he will be able to come home soon.
December 5- day 85
UPDATE- WEDNESDAY MORNING 12/5
I worked all day yesterday and my parents went to see Jeff in the hospital. I went after work and he did not remember my parents visiting him. His nurse cut his diprivan in half so maybe he could remember more. He has a urinary tract infection. His MRSA came back negative again yesterday. The infectious disease doctor wants more cultures ran today because he has a fever.
We had snow last night so school is closed today. However I do not know if the roads are clear enough to drive to Fort Wayne. Pray that I am able to drive there to see him today.
UPDATE- WEDNESDAY EVENING 12/5
Jeff is very depressed now. He asked his nurse today why he had a trach. She explained to him about what happened to him on Friday. She told him that he aspirated and food clogged his air passages and that he had some problems with his heart due to the lack of oxygen. Then she told him they had to do CPR on him but that he was doing better now. Every time I tried to leave he got very emotional. I think it would do him good to have visitors now. Especially since I am back at work and can only be there in the evenings after school.
I worked all day yesterday and my parents went to see Jeff in the hospital. I went after work and he did not remember my parents visiting him. His nurse cut his diprivan in half so maybe he could remember more. He has a urinary tract infection. His MRSA came back negative again yesterday. The infectious disease doctor wants more cultures ran today because he has a fever.
We had snow last night so school is closed today. However I do not know if the roads are clear enough to drive to Fort Wayne. Pray that I am able to drive there to see him today.
UPDATE- WEDNESDAY EVENING 12/5
Jeff is very depressed now. He asked his nurse today why he had a trach. She explained to him about what happened to him on Friday. She told him that he aspirated and food clogged his air passages and that he had some problems with his heart due to the lack of oxygen. Then she told him they had to do CPR on him but that he was doing better now. Every time I tried to leave he got very emotional. I think it would do him good to have visitors now. Especially since I am back at work and can only be there in the evenings after school.
December 3- day 83
I went back to work today. I only worked until 10 am. The hospital called and the surgeon wanted to do the tracheotomy today. I had told the school that I might have to leave at a moments notice so they were ok with me leaving.
His surgery went well and the pulmonologist wants to try to get him off the ventilator tomorrow or Wednesday at the latest. He will have a smaller trach inserted in two weeks. He will be able to eat and talk then. Jeff does not understand what is going on. The nurse just told me on the phone that they have lessened his sedation. Tomorrow I will try to explain why he has this.
I am going to try to work again tomorrow. It was so hard not being with him. I just want to sit and hold his hand all day.
His surgery went well and the pulmonologist wants to try to get him off the ventilator tomorrow or Wednesday at the latest. He will have a smaller trach inserted in two weeks. He will be able to eat and talk then. Jeff does not understand what is going on. The nurse just told me on the phone that they have lessened his sedation. Tomorrow I will try to explain why he has this.
I am going to try to work again tomorrow. It was so hard not being with him. I just want to sit and hold his hand all day.
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