Jon's physical therapy went well today. The Physical Therapist Assistant taking over for Matt came down and the 3 of us (PTA, Aide, Barb) got him into the chair okay with no incidents. Jon then ate lunch. It was an okay lunch. He didn't eat as much as I wanted but it was half way decent. In physical therapy she worked his shoulders and neck!! He had his brace off when I got there around 9:00. He let me put it on around 11:00 and then we took it back off for his therapy. I have friends at the nursing center and the husband, Bill, came down. He told Jon not to let the PTA give him a hard time. That she can be hard core. Jon replied "She's been pretty hard on me, but it's okay, she's easy on the eyes." When she heard that she turned beet red. She said she has 10 shades. One is normal, and that she was probably a ten now. She is very cute.
He was pretty wiped out after getting back into bed. He was up in the chair for 3 hours.
His friend Mark and his sister Jody came up to see him tonight. Jon was in a good mood and seemed to enjoy them. He got a little sad at the end of the day. I'm not sure what happened but by the end of the day, Jon was getting teary eyed. When Mom asked if he was okay, he said no but didn't want to talk about it.
Overall it was a pretty good day.
God bless you and thank you for checking in.
Monday, June 22, 2009
Building Blocks of Success
As part of his therapy, Uncle J works with blocks as shown in the picture on the left. He works on picking them up and putting them in the peg holes. I haven't been there to see him do much therapy since I am there on the weekends, but from what I gather, he has been doing fairly well.
"Block" on, Uncle J!
Sunday, June 21, 2009
Slow weekend
It's been a busy time for me (Barb) and unfortunately Jon has not had visitors this weekend. Friday night I watched children at church for a spanish speaking group. Saturday morning I stopped in and had Jon sign 3 cards! He signed his name in cursive. He did a good job. :) One for Dad for Father's Day, one for nephew Joshua (his birthday was the 18th and he turned 20!!) and one for niece Angelique (her birthday is the 25th and I will let her tell her own age now). He had the front of his neck brace off when I got there. The back was still on and was soaked. I took it off, washed the neck pads and showed the nurse how to put it back on. We had a cookout for their birthdays and for Father's Day in Defiance. I did not get back to see Jon again last night until 8:20. He said it was quiet all day. He still had the neck brace off so I put it back on for the night.
Today, Dad got there around noon. I went to second service and then to a graduation party and worked for about 2 hours doing payroll (something my workers might appreciate) and catching up on other things at work. Aunt Judy and Uncle Bill stopped by on their way back home from Rhode Island. Jon said he enjoyed their visit. Dad stayed until just after 5:30, so he spent a good portion of his day with Jon which is nice for Father's day. I didn't get there until 7:20pm :( I found that he had his neck brace off again. When I asked if he had it off all day, he said "You can put it back on" so I am assuming it was off all day. The instructions were for a few hours at a time. With the goal of having it off permanently in six weeks. We talked for a little bit and then we did a word search. He is good at finding them and seems to enjoy it. I waited until his next check which should have been done around 9:15. I'm glad I stayed. His C-Diff seems to be coming back. I noticed "the odor". So I mentioned it to the aide and she said the last 3 checks he has had diarrhea. She said this morning he was solid. Not good signs. I told the nurse and she is calling the doctor to get an order for a stool sample which won't be taken until tomorrow since it is so late tonight. We still have no appointment for the colostemy. It is taking alot longer than I anticipated. Hopefully Jon won't change his mind before they get around to it. I left at 10:00 pm.
Tomorrow will be the first day of physical therapy without Matt. He is on vacation and one of his assistants will be working with Jon. It will also be the first day of getting into the chair without Matt. All last week, Matt worked with Mom or I on getting Jon into the chair using a lift. He wanted us to know so that we can tell the aides how to do it. Some of them don't really like it when we try to tell them about Jon as they think they already know it. Spinal cord injuries are different and they don't realize how different they can be. The lift itself is the same but putting Jon into the chair and making sure he doesn't fall out is different than what they are used to so we will see how they do with it. I told Matt to show the aides himself and he said he would rather show us and for us to tell them. I said "Okay". The foot rests stick out too far for the lift to get as close as it should, so when the lift lowers him, Jon sits on the edge of the seat. We have to hold onto him and recline the chair in order to get him all the way back into the seat. Matt's biggest concern is that if Jon's muscles go into a spasm as he is sitting on the edge of the seat that he could fall out. Thankfully Jon does not have many leg spasms and is only on the edge for less than a minute but it is still a real possibility. Please pray for Jon and the transfers. He will get into the chair around 1:00 and back out around 3:00pm. He will also be able to eat lunch in the chair which will really help with his swallowing and feeding himself since he will be up at a true 90 degrees.
Jon's friend Mark is working down here again this week and so he said he would stop by and see Jon in the evenings. Jon is looking forward to seeing him tomorrow.
Thank you for checking in.
Today, Dad got there around noon. I went to second service and then to a graduation party and worked for about 2 hours doing payroll (something my workers might appreciate) and catching up on other things at work. Aunt Judy and Uncle Bill stopped by on their way back home from Rhode Island. Jon said he enjoyed their visit. Dad stayed until just after 5:30, so he spent a good portion of his day with Jon which is nice for Father's day. I didn't get there until 7:20pm :( I found that he had his neck brace off again. When I asked if he had it off all day, he said "You can put it back on" so I am assuming it was off all day. The instructions were for a few hours at a time. With the goal of having it off permanently in six weeks. We talked for a little bit and then we did a word search. He is good at finding them and seems to enjoy it. I waited until his next check which should have been done around 9:15. I'm glad I stayed. His C-Diff seems to be coming back. I noticed "the odor". So I mentioned it to the aide and she said the last 3 checks he has had diarrhea. She said this morning he was solid. Not good signs. I told the nurse and she is calling the doctor to get an order for a stool sample which won't be taken until tomorrow since it is so late tonight. We still have no appointment for the colostemy. It is taking alot longer than I anticipated. Hopefully Jon won't change his mind before they get around to it. I left at 10:00 pm.
Tomorrow will be the first day of physical therapy without Matt. He is on vacation and one of his assistants will be working with Jon. It will also be the first day of getting into the chair without Matt. All last week, Matt worked with Mom or I on getting Jon into the chair using a lift. He wanted us to know so that we can tell the aides how to do it. Some of them don't really like it when we try to tell them about Jon as they think they already know it. Spinal cord injuries are different and they don't realize how different they can be. The lift itself is the same but putting Jon into the chair and making sure he doesn't fall out is different than what they are used to so we will see how they do with it. I told Matt to show the aides himself and he said he would rather show us and for us to tell them. I said "Okay". The foot rests stick out too far for the lift to get as close as it should, so when the lift lowers him, Jon sits on the edge of the seat. We have to hold onto him and recline the chair in order to get him all the way back into the seat. Matt's biggest concern is that if Jon's muscles go into a spasm as he is sitting on the edge of the seat that he could fall out. Thankfully Jon does not have many leg spasms and is only on the edge for less than a minute but it is still a real possibility. Please pray for Jon and the transfers. He will get into the chair around 1:00 and back out around 3:00pm. He will also be able to eat lunch in the chair which will really help with his swallowing and feeding himself since he will be up at a true 90 degrees.
Jon's friend Mark is working down here again this week and so he said he would stop by and see Jon in the evenings. Jon is looking forward to seeing him tomorrow.
Thank you for checking in.
Thursday, June 18, 2009
"O frabjous day! Callooh! Callay!"
This is a quote from a poem about slaying a dragon by Lewis Carroll of Alice in Wonderland fame:
"And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!'
He chortled in his joy.
Jon's dragon these last 8 months has been his head gear. First, the halo and then the Miami J neck brace. We spent a total of 4 and a half hours at OSU getting Cat scans, consulting with the doctor and then back again for x-rays, that were initially ordered but not communicated to the EMTs. Dr. Mendell looked at them and pronounced the spine healed and stable. Only one hitch; what looks like the major point of impact at the 5 T vertebrae looks almost like the spine is making a major turn toward the front of his body. The doctor didn't think that the spine was being pulled toward either side of his body but he didn't have any other explanation why he tilts so in bed. It may just be due to poor trunk control (my guess, not his.) He is allowed to remove the brace gradually. At first, when he's not very active and after he has built up some strength through physical therapy he can be without it for longer periods of time. We go back in six weeks for the final word. Dr. Mendell also had no idea why either of the two operations involving the spine that were suggested several months ago would even be considered. Redoing the back in major surgery seems like a step backward to him and he never heard of stretching the muscles by weakening them--perhaps I just didn't explain it well. Although he was very surprised they did not do surgery in the very beginning, before everything had a chance to heal.
Other news: he has major constipation and a urinary tract infection. X rays show there is no other problem than constipation to make his tummy swell so that's good news.
He has been in the chair almost every day and is gaining confidence in his driving. Matt, the physical therapist, is changing the handle from a joy stick to something that will look a little like a goal post. The pressure mapping has still not been done due to the chair reps computer program not working. Although the pressure mapping will allow Jon to sit in the chair for longer periods of time and not endanger the healing process of his bedsore, he has a reclining feature as well to help relieve the pressure of sitting upright. Matt has Jon reclining every 20 minutes for at least 30 seconds. Jon usually reclines for more than that.
The special bed has not gone back yet and we think that we may have some valid reasons for continuing using it. We just have to convince the doctor at the Village that a paralyzed person with arthritis of the spine, in addition to his blown vertebrae, needs to have a bed which is healing and prevents further sores from developing.
Jon has had the pleasure of a good friend from Defiance dropping by three evenings this week. He wasn't feeling great the third day but hopefully that won't interfere with future visits. Thanks so much Mark for stopping by. We really appreciate it.
To see the whole poem go to: www.jabberwocky.com/carroll/jabber/jabberwocky/html The poem has been set to music and we had a great time singing it in my high school choir days.
"And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!'
He chortled in his joy.
Jon's dragon these last 8 months has been his head gear. First, the halo and then the Miami J neck brace. We spent a total of 4 and a half hours at OSU getting Cat scans, consulting with the doctor and then back again for x-rays, that were initially ordered but not communicated to the EMTs. Dr. Mendell looked at them and pronounced the spine healed and stable. Only one hitch; what looks like the major point of impact at the 5 T vertebrae looks almost like the spine is making a major turn toward the front of his body. The doctor didn't think that the spine was being pulled toward either side of his body but he didn't have any other explanation why he tilts so in bed. It may just be due to poor trunk control (my guess, not his.) He is allowed to remove the brace gradually. At first, when he's not very active and after he has built up some strength through physical therapy he can be without it for longer periods of time. We go back in six weeks for the final word. Dr. Mendell also had no idea why either of the two operations involving the spine that were suggested several months ago would even be considered. Redoing the back in major surgery seems like a step backward to him and he never heard of stretching the muscles by weakening them--perhaps I just didn't explain it well. Although he was very surprised they did not do surgery in the very beginning, before everything had a chance to heal.
Other news: he has major constipation and a urinary tract infection. X rays show there is no other problem than constipation to make his tummy swell so that's good news.
He has been in the chair almost every day and is gaining confidence in his driving. Matt, the physical therapist, is changing the handle from a joy stick to something that will look a little like a goal post. The pressure mapping has still not been done due to the chair reps computer program not working. Although the pressure mapping will allow Jon to sit in the chair for longer periods of time and not endanger the healing process of his bedsore, he has a reclining feature as well to help relieve the pressure of sitting upright. Matt has Jon reclining every 20 minutes for at least 30 seconds. Jon usually reclines for more than that.
The special bed has not gone back yet and we think that we may have some valid reasons for continuing using it. We just have to convince the doctor at the Village that a paralyzed person with arthritis of the spine, in addition to his blown vertebrae, needs to have a bed which is healing and prevents further sores from developing.
Jon has had the pleasure of a good friend from Defiance dropping by three evenings this week. He wasn't feeling great the third day but hopefully that won't interfere with future visits. Thanks so much Mark for stopping by. We really appreciate it.
To see the whole poem go to: www.jabberwocky.com/carroll/jabber/jabberwocky/html The poem has been set to music and we had a great time singing it in my high school choir days.
Monday, June 15, 2009
More surprise visitors
Jon did not need suctioning today until we were getting ready for therapy. He needed suctioning as we were getting him dressed and then an hour later. He ended up being suctioned 4 times in 6 hours. He is coughing alot up on his own but still has alot being suctioned out. He was in the wheel chair for 2 hours again. They were supposed to "pressure map" his seat in order to allow him to sit up in the chair for more than 2 hours. The chair rep got his days mixed up and won't be out until tomorrow. Hopefully starting tomorrow we can get him up a little longer. I will let you know tomorrow what "pressure mapping" is exactly. My understanding is that they use the computer to find out where his pressure points are and then adjust the seat accordingly.
Yesterday among the human visitors we also had a rabbit visitor come in. A lady that lives close by has 4 rabbits and brought in her Fleming giant. He was 40 pounds!! I had her take him into Jon's room so he could see him and Jon flipped out. He is the largest either of us has seen before. Today she brought in it's mate. She is only 17 pounds! Still a rather large rabbit but not nearly the size of Big Bun (short for Big Bunny). Tomorrow she will bring in the other 2 they have. She doesn't know anyone at the center, rabbits can also be therapeutic and didn't know if anyone would enjoy seeing them. They have been a hit with everyone that has seen them. Jon was able to pet the one today.
While Jon was eating dinner (rather late tonight - arrived at 6:50), Greg called and wanted to know where I was. I said with Jon. He said good, go to the front desk. Mark, a friend of Jon's was in town. He has been traveling back and forth daily from Defiance to Columbus for work. He was finally given a hotel room instead of traveling 5 1/2-6 hours round trip. He surprised both of us. He will be in town until Thursday for work so we will get to see him for alittle in the evenings. It lifted Jon's spirits.
Thanks for checking in. Mom and Carol will be down tomorrow.
Yesterday among the human visitors we also had a rabbit visitor come in. A lady that lives close by has 4 rabbits and brought in her Fleming giant. He was 40 pounds!! I had her take him into Jon's room so he could see him and Jon flipped out. He is the largest either of us has seen before. Today she brought in it's mate. She is only 17 pounds! Still a rather large rabbit but not nearly the size of Big Bun (short for Big Bunny). Tomorrow she will bring in the other 2 they have. She doesn't know anyone at the center, rabbits can also be therapeutic and didn't know if anyone would enjoy seeing them. They have been a hit with everyone that has seen them. Jon was able to pet the one today.
While Jon was eating dinner (rather late tonight - arrived at 6:50), Greg called and wanted to know where I was. I said with Jon. He said good, go to the front desk. Mark, a friend of Jon's was in town. He has been traveling back and forth daily from Defiance to Columbus for work. He was finally given a hotel room instead of traveling 5 1/2-6 hours round trip. He surprised both of us. He will be in town until Thursday for work so we will get to see him for alittle in the evenings. It lifted Jon's spirits.
Thanks for checking in. Mom and Carol will be down tomorrow.
Sunday, June 14, 2009
A Visitor filled weekend
Friday Jon was in the electric wheel chair again for 2 hours. After physical therapy was over, we went on a ride around the inside of the center and then took a short trip outside. He was doing so well on his oxygen saturation that the PT took him from 4 liters to 3 liters. He was still satting at 95 so we lowered it to 2 liters for a while. When we went outside, we took it back up to 3 liters and checked again when we came back in and it was still 95 so we lowered to 2 again. I know this doesn't make sense to most of you, the short of it is that he is able to handle less oxygen. That is one of the goals is to get him off the oxygen so it was a good thing. We took it back to 4 liters when he was put back in bed. After Jon got back in bed I read the fact sheet they out for "today in history". Jon listened to the facts okay. On the back was a word search. I thought it would be good mental exercise so I asked him if he wanted to find some. After the 3rd one he said "I'm done". I found one and showed him and he started again. He ended up finding them all. For about 3 of them I would give hints "I found panda. It starts in the 3rd row" or something similar and he would find them. He seemed to enjoy it. I went down to the activity room and asked if they had some word searchs. She said yes and gave me xerox pages of 7 different puzzles including a word scramble.
Friday evening Greg and a friend Shawn came down to spend the weekend. Jon was more communicative this weekend than he was last weekend. He was not his old self but definitely improved from last weekend.
Saturday I asked Greg and Shawn to do another word search with him. He did very well and again seemed to enjoy it. Jon was interactive with both. Jon had a rough afternoon with his breathing. He asked to be suctioned 4 times in about 3 1/2 hours. That is alot in a short time period. We used the "pickle" to help break it up more and it worked. They left about 9:00pm. I went back around 10:15 to help with the last check before the Aides shift change and then stayed for the first check on night shift. I left at 12:38 am. This night nurse is very nice and helps the aide in checking Jon so I don't have to worry about whether he will be checked and if it is on time or not.
Sunday I went in around 10:15am (so much for 8:15- my intended time). Greg and Shawn came in around 11:15 and I went to to the 2nd service at church. Dad had gone to first and so he got there around noon. During service our Uncle Bill and Aunt Judy called. I said I would call back around 1:00 when service was over. Little did I know that they were coming to Columbus as they were flying out of Port Columbus and they wanted directions to Jons'. It all worked out well though as I called them around 1:15 and they were just at Polaris. I walked them through directions on how to get to Jons and I literally got there about 1 minute before them. My mom is in Traverse City for my cousin's sons high school graduation and she called while I was directing our aunt and uncle so I called her back. As I walked into Jon's room, I was on the phone with relatives from Traverse City and Aunt Judy and Uncle Bill behind me. Greg, Dad and Shawn were already there. So Jon went from famine to feasting on visitors. Jon talked to about 5 people on the phone and then visited with Aunt Judy and Uncle Bill. After everyone left I let Jon rest and I went down to the lounge to take a nap myself. Later Jon did a word scramble on different birds. Again, he seemed to enjoy the mental challenge. We worked on exercising his hands and legs. Before I left him for the night, he said he enjoyed the weekend and all the visitors today.
It is my bedtime so I bid you all a good night and thank you for checking in. Please continue praying. If anyone would like to call and talk to Jon you are welcome to call me talk to him. If it is not a good time we will call you back. My number is 614-403-6834. I am off for 10 weeks from my primary job so you can call during the day. He is usually in therapy from 1 to 3, other than that our days are pretty open. Thanks again.
Friday evening Greg and a friend Shawn came down to spend the weekend. Jon was more communicative this weekend than he was last weekend. He was not his old self but definitely improved from last weekend.
Saturday I asked Greg and Shawn to do another word search with him. He did very well and again seemed to enjoy it. Jon was interactive with both. Jon had a rough afternoon with his breathing. He asked to be suctioned 4 times in about 3 1/2 hours. That is alot in a short time period. We used the "pickle" to help break it up more and it worked. They left about 9:00pm. I went back around 10:15 to help with the last check before the Aides shift change and then stayed for the first check on night shift. I left at 12:38 am. This night nurse is very nice and helps the aide in checking Jon so I don't have to worry about whether he will be checked and if it is on time or not.
Sunday I went in around 10:15am (so much for 8:15- my intended time). Greg and Shawn came in around 11:15 and I went to to the 2nd service at church. Dad had gone to first and so he got there around noon. During service our Uncle Bill and Aunt Judy called. I said I would call back around 1:00 when service was over. Little did I know that they were coming to Columbus as they were flying out of Port Columbus and they wanted directions to Jons'. It all worked out well though as I called them around 1:15 and they were just at Polaris. I walked them through directions on how to get to Jons and I literally got there about 1 minute before them. My mom is in Traverse City for my cousin's sons high school graduation and she called while I was directing our aunt and uncle so I called her back. As I walked into Jon's room, I was on the phone with relatives from Traverse City and Aunt Judy and Uncle Bill behind me. Greg, Dad and Shawn were already there. So Jon went from famine to feasting on visitors. Jon talked to about 5 people on the phone and then visited with Aunt Judy and Uncle Bill. After everyone left I let Jon rest and I went down to the lounge to take a nap myself. Later Jon did a word scramble on different birds. Again, he seemed to enjoy the mental challenge. We worked on exercising his hands and legs. Before I left him for the night, he said he enjoyed the weekend and all the visitors today.
It is my bedtime so I bid you all a good night and thank you for checking in. Please continue praying. If anyone would like to call and talk to Jon you are welcome to call me talk to him. If it is not a good time we will call you back. My number is 614-403-6834. I am off for 10 weeks from my primary job so you can call during the day. He is usually in therapy from 1 to 3, other than that our days are pretty open. Thanks again.
Thursday, June 11, 2009
A Futile Trip
Went shopping for some clothes for Jon and so I arrived on the late side again today. The nurse told me that Jon's feeding tube was clogged, again, only this time they didn't seem to be able to get it unclogged. Clogging has been a problem for the last couple of months. They had decided that this time they would send Jon to the hospital to have the tube replaced. I kept bugging her about when would he be leaving and got some answer about being unarble to reach the doctor or not having time, or whatever. Finally about 5:30--just before supper--she announced the ambulance would be there at 6. He ate a medium breakfast, next to nothing for lunch and now no supper! Not so sure how much difference it would have made but still.
On the way over the ambulance driver commented about the time difference between OSU and St. Anne's emergency room visits. OSU: average time from start to finish 6 hours; St Anne's: 3 hours. Because they had trouble getting ahold of the place he's staying they couldn't call the ambulance to send him back??? Anyway it was after 10 before arriving "home" and around 11 before he was settled in and ran out of requests.
To make a long story short there are two different kinds of installations for PEGs and we didn't know which it was. An ultra sound around his tummy was no help at all. After much rummaging for a tube that might fit it was decided that since they didn't know for sure just which kind of attachment they were making that maybe it would be best to see a gastroentestinal doc and start from scratch.
On the way over the ambulance driver commented about the time difference between OSU and St. Anne's emergency room visits. OSU: average time from start to finish 6 hours; St Anne's: 3 hours. Because they had trouble getting ahold of the place he's staying they couldn't call the ambulance to send him back??? Anyway it was after 10 before arriving "home" and around 11 before he was settled in and ran out of requests.
To make a long story short there are two different kinds of installations for PEGs and we didn't know which it was. An ultra sound around his tummy was no help at all. After much rummaging for a tube that might fit it was decided that since they didn't know for sure just which kind of attachment they were making that maybe it would be best to see a gastroentestinal doc and start from scratch.
Monday, June 8, 2009
Rough Weekend
Our Uncle Frank and Denise came down Friday the morning he was moved from OSU. Jon had a good visit with them. Our cousin Dean came down Wednesday and visited with Jon for over 4 hours. Jon seemed to be in good spirits then. As the week went on he started to be more withdrawn. This weekend he kept his eyes closed most of the weekend. When asked if he was tired or bored, he said both. Even Greg and Angelique could not pull him out of it. Angelique said he did laugh a time or two but he was definitely more withdrawn than usual. He is no longer watching or wanting the tv on 24/7 (which is good), as he said "the shows are tending to repeat themselves". I was able to read the first 7 chapters of 90 Minutes in Heaven in which the author died and after 90 minutes of no pulse came back to life and was singing. The story concentrates on his recovery from massive damage as his car had been run over by a semitruck on a narrow bridge. It ends up being an inspiring story. I think it is important for Jon to hear about others that have gone through tough life changing experiences and have managed to live productive and often inspiring lives. Another person is Joni Earkenson Tada who is, like Jon, a partial quadriplegic. She does not have use of her hands either but does her arms, again like Jon. She was in a diving accident in 1967 at the age of 17. She has become an artist, using her mouth to write, draw and paint. She is also known world wide as an advocate for people with disabilities.
To add to Mom's description of the bed, the glass beads are coated with soda lime silicone. The soda lime keeps a ph balance between 9 and 10 which does not kill bacteria but does prevent it from growing and spreading so the bed itself is truly part of the healing process. Another drawback of the bed is that while it does "harden" for patient transfers, it is difficult to get him turned to see if he has had a bowel movement or not. Saturday night I stayed all night and he was clean all night. Last night I stayed all night and he had to be cleaned at every check starting with the 10:00 pm check. Yesterday at 5:40 pm, while Greg and Angelique were still there we discovered that the wound bandage had come off and that there was nothing covering the wound. It was open on the sheets. We don't know at which turn it came off but it was definitely off for 3 hours. He had been checked and cleaned at 2:20 and checked again at 5:00.(He is supposed to be checked every 2 hours). At 5:00 he was checked and was clean so no sheets were removed and the bandage was not on the sheets at 5:40. The aide did not say anything at 5:00 about the bandage being off but a different aide at 5:40 pointed it out. Due to the air circulation of the bed and the silicone pulling out the moisture from the wound, he can not have a moisture barrier between him and the bed. So the "chucks" they use to keep the sheet clean can not be used on Jon. Each time that the sheets are soiled they have to be thrown away. Apparently they can't bleach and sanitize them. This is getting expensive for them. As the turns are hard on Jon he has finally decided to see about having a temporary colostemy. This will help keep the wound area free of contamination and less expensive for the nursing center. The doctor is supposed to be in this morning. When I left at 8:40 this morning I left Dad with specific questions to ask about the procedure, how long he would be out of the nursing center and therefore off the air bed he is on. Hopefully we can get it scheduled soon.
Please keep Jon in your prayers and include his depression. When the social worker saw the amount of depression medication he is on, she asked if he wanted to speak with a counselor or not. He said no but he is going through alot and I think he needs to talk to someone.
Thanks for checking in. Sister Barb
To add to Mom's description of the bed, the glass beads are coated with soda lime silicone. The soda lime keeps a ph balance between 9 and 10 which does not kill bacteria but does prevent it from growing and spreading so the bed itself is truly part of the healing process. Another drawback of the bed is that while it does "harden" for patient transfers, it is difficult to get him turned to see if he has had a bowel movement or not. Saturday night I stayed all night and he was clean all night. Last night I stayed all night and he had to be cleaned at every check starting with the 10:00 pm check. Yesterday at 5:40 pm, while Greg and Angelique were still there we discovered that the wound bandage had come off and that there was nothing covering the wound. It was open on the sheets. We don't know at which turn it came off but it was definitely off for 3 hours. He had been checked and cleaned at 2:20 and checked again at 5:00.(He is supposed to be checked every 2 hours). At 5:00 he was checked and was clean so no sheets were removed and the bandage was not on the sheets at 5:40. The aide did not say anything at 5:00 about the bandage being off but a different aide at 5:40 pointed it out. Due to the air circulation of the bed and the silicone pulling out the moisture from the wound, he can not have a moisture barrier between him and the bed. So the "chucks" they use to keep the sheet clean can not be used on Jon. Each time that the sheets are soiled they have to be thrown away. Apparently they can't bleach and sanitize them. This is getting expensive for them. As the turns are hard on Jon he has finally decided to see about having a temporary colostemy. This will help keep the wound area free of contamination and less expensive for the nursing center. The doctor is supposed to be in this morning. When I left at 8:40 this morning I left Dad with specific questions to ask about the procedure, how long he would be out of the nursing center and therefore off the air bed he is on. Hopefully we can get it scheduled soon.
Please keep Jon in your prayers and include his depression. When the social worker saw the amount of depression medication he is on, she asked if he wanted to speak with a counselor or not. He said no but he is going through alot and I think he needs to talk to someone.
Thanks for checking in. Sister Barb
Saturday, June 6, 2009
The Week in Review
Overall it has been a good week for Jon. We have an entirely new type of bed. It has fluidity . . . little glass beads surrounded by silica gel are swishing their way around in the top part of the mattress. It almost looks like someone was popping popcorn. This motion is to prevent new bedsores; the silica is to absorb any moisture and keep the bedsore dry. At the size of Jon’s sore it would take over a year to heal. The manufacturer claims to heal it 4.4 times faster. It is not without its problems..the second day it started spitting fine silica on the floor. Feels extremely slick on the shoes! It was replaced and the second bed is doing well. I had a chance to look at the sore and it looks much better. Now the biggest problem is that it can’t have more than one layer on top of the mattress which is almost like chiffon. This tends to make anything on it shift downward when the head is elevated. He would definitely have needed to wear his turtle shell if he had had this type of bed in March since he looks rather scrunched most of the time. The other problem is that since the door to the room has to be kept closed for temperature control around the bed many of the staff takes that as a sign that he is busy with someone else. We’re thinking that that is one possibility why he has missed his second shower this week. Since he missed both shower days the week before by being in the hospital he is well overdue! I thought I had the problem solved yesterday; I gave instructions for his neck brace, the bath bed was outside the door and so I went to lunch. When I got back nothing had been done and was informed it was too late since that shift had already gone home. We were assured it would be given this morning but that’s what they said last Saturday. Barb is there now since one nurse advised being there at 7 a.m. and I haven’t been getting up as early as she does.
A piece of good news- the wheelchair made its way back to Jon. He drove it down two halls and he parked in the dining room to eat lunch. I had good intentions of letting him feed himself but I was wrong about the chair being able to raise and lower itself to fit under tables. Since I couldn’t get a tray table to fit under the wheels of the chair …once I got it high enough…I gave up and fed Jon myself. The dining room was almost deserted and Jon was facing a beautiful glassed wall looking out on a patio. (He has had several meals where he fed himself entirely on his own.)
The wheelchair was adjusted in a few places and we asked about a tray and a place for an oxygen tank. The therapist is so sure we can get him off oxygen which is great but I think it would be handy to have that option in case he needs it at some future time. As we went down the hall we noticed a cute license on one of the other chairs similar to Jon’s that said “Wilson’s Mercedes.” we’ll have to see what kind of sign Jon wants on his.
The occupational therapist has brought a spongy pad to put under Jon’s dishes and a plate guard to give him something to push against when forking his food. She also found some silverware with fat handles that fit in his hand without being strapped in. She brought some pegs and a board but was interrupted and never made her way back. We’ll try to work with them ourselves.
The physical therapist is quite enthusiastic about getting Jon out of his room. He is doing some shoulder exercises to help give his lungs more room to breathe. I have looked over a report from Fort Wayne several times and completely glossed over the fact that he had fractured at least one shoulder blade in addition to the cracked ribs and blown vertebrae but Matt caught it when I gave him the report to read. One of his goals is to get Jon off of oxygen by strengthening his lungs,stretching his shoulder muscles to give the lungs room to expand and building some upper body strength to prepare for board transfers.
We have two different types of breathing apparatus to encourage deeper breathing but have found the advice of using them every hour to be impossible. I have a chart to help me to remember to exercise his arms, hands, shoulders, legs and feet …and breathing and the best I’ve been able to do in a long time was 2 complete cycles yesterday.
Diet wise Jon is eating regular foods. He finds some meats tough. The speech gal asked how he was doing and he complained about that so she gave him a couple of more exercises--then he got supper which was beef "tips” and noodles. Chunks of the beef had gristle and it was almost impossible to tell which ones did or didn’t. Plain tubular pasta without sauce is rather uninteresting and for some reason he thought the frozen peas were “tough” too. He’s never preferred canned peas so I’m not sure what his problem was. He has seemed rather “down” the last day or two so maybe that was it. They have been giving him Ensure to increase his nutrition intake 3 times a day--although yesterday I was sure it was four, possibly five! At any rate I had really been pushing it all day and we were already two behind when an aide brought another one for his evening snack! Regular meals are still supplemented by tube feedings but that runs only at night.
Again, we are impressed with the therapy programs but continue to be frustrated in the lack of staff. That is compounded by the work ethic of the aides who seem rather nebulous about calling in to say they’re not coming to work or are extremely late. There is also a great turnover in staff as we had noticed at CRSI and the admission director confirmed our observation saying that it was a problem throughout the health care industry. I’m not sure how much 12 hour shifts contribute to that. One compensation here is that they work 3 days and are off 3 days but I’m not sure they are on 12 hour shifts…those would kill me!
Brief update on the rest of the family: Josh had been wrestling and was in a foot hold when he heard several cracking sounds. Everything seemed all right when he walked on it except for some swelling and so he continued on his way for the next week but he did wear an ankle brace. The next weekend he was playing football and he fell on the already injured foot. I saw him come limping up the driveway and he showed me his ankle which looked like someone had inserted a hardboiled egg under the skin on top of his ankle bone. I agreed it needed x-raying so we went off to the hospital. They took pictures and said it was just sprained and gave him a more substantial brace to wear. A couple of days later they called to say that when the x ray was dry it looked like it had a hair line fracture and he should make an appointment with a doctor. He chose a different clinic and they took x rays also. They didn't see a break but decided to treat it as such and he has a walking cast. While Jon was in the hospital lat week at OSU Barb had a high fever and was feeling and looking more miserable than I think I've ever seen her so she went to the doctor and a CAT scan was ordered. We were concerned that she might have the infection Jon had. She was evidently so concerned about that possibility that she was positively joyous to find it was "just diverticulitis." She joins a long line of relatives with that ailment I understand. She had a check-up with her oncologist this last week and everything looks okay. I'm recovering from an ear, nose, throat infection but doing okay otherwise. Everyone else is fine healthwise as far as I know. Josh and Angelique are both celebrating birthdays this month. I cannot believe my youngest grandson will be 20!!!
Must go--Columbus has a really big arts and crafts show and ouor favorite artist from California is here. We are anxious to catch up on news of his health and his family. Hope you are enjoying the same weather we've been having.
A piece of good news- the wheelchair made its way back to Jon. He drove it down two halls and he parked in the dining room to eat lunch. I had good intentions of letting him feed himself but I was wrong about the chair being able to raise and lower itself to fit under tables. Since I couldn’t get a tray table to fit under the wheels of the chair …once I got it high enough…I gave up and fed Jon myself. The dining room was almost deserted and Jon was facing a beautiful glassed wall looking out on a patio. (He has had several meals where he fed himself entirely on his own.)
The wheelchair was adjusted in a few places and we asked about a tray and a place for an oxygen tank. The therapist is so sure we can get him off oxygen which is great but I think it would be handy to have that option in case he needs it at some future time. As we went down the hall we noticed a cute license on one of the other chairs similar to Jon’s that said “Wilson’s Mercedes.” we’ll have to see what kind of sign Jon wants on his.
The occupational therapist has brought a spongy pad to put under Jon’s dishes and a plate guard to give him something to push against when forking his food. She also found some silverware with fat handles that fit in his hand without being strapped in. She brought some pegs and a board but was interrupted and never made her way back. We’ll try to work with them ourselves.
The physical therapist is quite enthusiastic about getting Jon out of his room. He is doing some shoulder exercises to help give his lungs more room to breathe. I have looked over a report from Fort Wayne several times and completely glossed over the fact that he had fractured at least one shoulder blade in addition to the cracked ribs and blown vertebrae but Matt caught it when I gave him the report to read. One of his goals is to get Jon off of oxygen by strengthening his lungs,stretching his shoulder muscles to give the lungs room to expand and building some upper body strength to prepare for board transfers.
We have two different types of breathing apparatus to encourage deeper breathing but have found the advice of using them every hour to be impossible. I have a chart to help me to remember to exercise his arms, hands, shoulders, legs and feet …and breathing and the best I’ve been able to do in a long time was 2 complete cycles yesterday.
Diet wise Jon is eating regular foods. He finds some meats tough. The speech gal asked how he was doing and he complained about that so she gave him a couple of more exercises--then he got supper which was beef "tips” and noodles. Chunks of the beef had gristle and it was almost impossible to tell which ones did or didn’t. Plain tubular pasta without sauce is rather uninteresting and for some reason he thought the frozen peas were “tough” too. He’s never preferred canned peas so I’m not sure what his problem was. He has seemed rather “down” the last day or two so maybe that was it. They have been giving him Ensure to increase his nutrition intake 3 times a day--although yesterday I was sure it was four, possibly five! At any rate I had really been pushing it all day and we were already two behind when an aide brought another one for his evening snack! Regular meals are still supplemented by tube feedings but that runs only at night.
Again, we are impressed with the therapy programs but continue to be frustrated in the lack of staff. That is compounded by the work ethic of the aides who seem rather nebulous about calling in to say they’re not coming to work or are extremely late. There is also a great turnover in staff as we had noticed at CRSI and the admission director confirmed our observation saying that it was a problem throughout the health care industry. I’m not sure how much 12 hour shifts contribute to that. One compensation here is that they work 3 days and are off 3 days but I’m not sure they are on 12 hour shifts…those would kill me!
Brief update on the rest of the family: Josh had been wrestling and was in a foot hold when he heard several cracking sounds. Everything seemed all right when he walked on it except for some swelling and so he continued on his way for the next week but he did wear an ankle brace. The next weekend he was playing football and he fell on the already injured foot. I saw him come limping up the driveway and he showed me his ankle which looked like someone had inserted a hardboiled egg under the skin on top of his ankle bone. I agreed it needed x-raying so we went off to the hospital. They took pictures and said it was just sprained and gave him a more substantial brace to wear. A couple of days later they called to say that when the x ray was dry it looked like it had a hair line fracture and he should make an appointment with a doctor. He chose a different clinic and they took x rays also. They didn't see a break but decided to treat it as such and he has a walking cast. While Jon was in the hospital lat week at OSU Barb had a high fever and was feeling and looking more miserable than I think I've ever seen her so she went to the doctor and a CAT scan was ordered. We were concerned that she might have the infection Jon had. She was evidently so concerned about that possibility that she was positively joyous to find it was "just diverticulitis." She joins a long line of relatives with that ailment I understand. She had a check-up with her oncologist this last week and everything looks okay. I'm recovering from an ear, nose, throat infection but doing okay otherwise. Everyone else is fine healthwise as far as I know. Josh and Angelique are both celebrating birthdays this month. I cannot believe my youngest grandson will be 20!!!
Must go--Columbus has a really big arts and crafts show and ouor favorite artist from California is here. We are anxious to catch up on news of his health and his family. Hope you are enjoying the same weather we've been having.
Friday, May 29, 2009
On the Move....Again
I was late getting to the hospital today and got there around noon only to be informed that he was being discharged in four hours and arrangements had been made to send him back to CRSI. Having had mixed feelings about the place and in the mood to go somewhere else his sisters and I decided to check out the Village at Westerville. Barb has a friend staying there and her husband loves it there. Everything seemed to fall in place; they had a room, felt qualified to handle his problems, is known for their therapy programs and so.... at six forty the ambulance arrived and off he went.
He is in a two bed room but has no room mate at the moment. It's a little small but it is our hope that once the chair situation gets resolved he won't be in the room that much. The first suction machine didn't work and Jon's comment was he hoped that wasn't a bad sign of things to come. The TV doesn't make for good group viewing since it is the small, ancient style hospital type which and over the bed and about a two feet from his head. However, there are several lounge areas where he can congregate with a larger group of visitors. He has an interesting air bed that we haven't seen before. It actually pulsates and may eliminate the need for turnings...we're not sure.
The grounds include sunny and shady areas and a patio to encourage going outdoors. It's actually near various eating and shopping areas. The therapy rooms and equipment are reminiscent of Green Springs but the therapy will be more individualized like the last place.
It is our hope that this can be our last move before going to Dodd.
He is in a two bed room but has no room mate at the moment. It's a little small but it is our hope that once the chair situation gets resolved he won't be in the room that much. The first suction machine didn't work and Jon's comment was he hoped that wasn't a bad sign of things to come. The TV doesn't make for good group viewing since it is the small, ancient style hospital type which and over the bed and about a two feet from his head. However, there are several lounge areas where he can congregate with a larger group of visitors. He has an interesting air bed that we haven't seen before. It actually pulsates and may eliminate the need for turnings...we're not sure.
The grounds include sunny and shady areas and a patio to encourage going outdoors. It's actually near various eating and shopping areas. The therapy rooms and equipment are reminiscent of Green Springs but the therapy will be more individualized like the last place.
It is our hope that this can be our last move before going to Dodd.
Thursday, May 28, 2009
And It's One Step Back
We have noticed that Jon has had bouts of sweating even though his arms and legs might be cold. One day his head was as cold as ice but he was drenched in sweat. Sunday he slept most of the day and was running a fever. He was back to saying strange things. He wanted to know where a ball was going to hit him. When asked "what ball" he said "the cannonball."
I noticed on Monday that he was asking for suctioning almost every two hours, especially after being turned. Before I left that night they said they would get a sputum sample and do blood work on Tuesday. When I arrived they added x-rays of his chest and stomach. Later that morning they announced the doctor wanted to send him to the hospital and did I have a preference. I prefer to keep as much with one hospital as possible so it was back to OSU and their emergency room. He had more blood draws, and another set of x-rays. Finally, 6 hours later, they had a room set up and he was admitted. The x-rays of the chest showed a mucous plug--he hasn't had one of those since February-- pneumonia and a high white blood count. They have also started him on flagel again so his c diff is also back.
Wednesday they had a top of the line air bed that does most of the turning for him at the click of a button (today however, it didn't seem to be working.) They have started a new set of treatments and seem to have taken care of the mucous plug (actually there were two) without a broncoscopy. He has a new gadget for practicing deep breathing called an Acapella but nicknamed a pickle for its shape. He has to breathe in slowly (something very hard for him to do) holding the "pickle" in his mouth and then blow out through it so that it makes a fluttering sound. He is getting better at it and we need to do it more often.
The bedsore has not been connected to a wound vac but it was clean enough that it didn't need to be debride. They prefer to treat without the vac at the moment and as long as it is looking good and healing we won't complain. Sometimes a change-up in therapy is what is needed to speed things along.
They have arrived at somewhat of a compromise on the feeding. For the last two days the only nutrition was what he actually ate. Today they added a can of Ensure to breakfast and at noon they gave him a high protein-calorie fruit drink. Tonight they said they were going to connect him to the feeding tube at night only to supplement his meals.
Meanwhile the fancy chair stays at CRSI and if we don't return another one will have to be sent to the new facility. I was hoping to be able to work in the x-rays needed for the neurosurgeon and perhaps a visit there at the hospital and save a trip to his office in June but do to the reasons for his hospitalization they prefer to wait until June.
Marj
I noticed on Monday that he was asking for suctioning almost every two hours, especially after being turned. Before I left that night they said they would get a sputum sample and do blood work on Tuesday. When I arrived they added x-rays of his chest and stomach. Later that morning they announced the doctor wanted to send him to the hospital and did I have a preference. I prefer to keep as much with one hospital as possible so it was back to OSU and their emergency room. He had more blood draws, and another set of x-rays. Finally, 6 hours later, they had a room set up and he was admitted. The x-rays of the chest showed a mucous plug--he hasn't had one of those since February-- pneumonia and a high white blood count. They have also started him on flagel again so his c diff is also back.
Wednesday they had a top of the line air bed that does most of the turning for him at the click of a button (today however, it didn't seem to be working.) They have started a new set of treatments and seem to have taken care of the mucous plug (actually there were two) without a broncoscopy. He has a new gadget for practicing deep breathing called an Acapella but nicknamed a pickle for its shape. He has to breathe in slowly (something very hard for him to do) holding the "pickle" in his mouth and then blow out through it so that it makes a fluttering sound. He is getting better at it and we need to do it more often.
The bedsore has not been connected to a wound vac but it was clean enough that it didn't need to be debride. They prefer to treat without the vac at the moment and as long as it is looking good and healing we won't complain. Sometimes a change-up in therapy is what is needed to speed things along.
They have arrived at somewhat of a compromise on the feeding. For the last two days the only nutrition was what he actually ate. Today they added a can of Ensure to breakfast and at noon they gave him a high protein-calorie fruit drink. Tonight they said they were going to connect him to the feeding tube at night only to supplement his meals.
Meanwhile the fancy chair stays at CRSI and if we don't return another one will have to be sent to the new facility. I was hoping to be able to work in the x-rays needed for the neurosurgeon and perhaps a visit there at the hospital and save a trip to his office in June but do to the reasons for his hospitalization they prefer to wait until June.
Marj
Sunday, May 24, 2009
Look Out World, Here he comes!
What a busy, exciting, hectic week it has been for Jon! Thursday the e-stim (electrical stimulation) on his legs and Friday his trial chair came and what a doozy it is! Three inches of special padding on the seat to relieve pressure on the derriere. In addition to reclining, the whole chair can go up and down so he can sit comfortably at any table or view things at different heights. I didn’t get a chance to see him operate it for the first time but did wise crack that for the first few days he probably needed a horn--it has one! He has driven it down the hall to the nurses station and back.This means that he can go downstairs to therapy and will be getting dressed daily for at least part of the day. The gowns have been driving us absolutely buggy!!! Getting into it is quite a procedure since he needs to have his turtle shell back brace and binders on his chest before he can sit upright. Then he needs to be hoisted up into the chair.
Yesterday afternoon they shut off the electricity in Jon’s room so they could install a special power strip in his room. . . just not enough outlets for all the electrical stuff he and his room mate need and 3 cords were stretching across the pathway. As if that wasn’t enough if respiratory needed to suction him they had to unplug one of the other items. And occasionally they have forgotten to replug what they took out. This staff is really overloaded. No one had been down as of the time I left on Friday to rearrange all the plugs so 3 cords were still crossing between the end of the bed and the wall.
We had been spoiled by the last speech therapist. He was assigned to Michelle and unless he missed a day and was making it up on the weekend she was the only therapist he saw. So far this week I think he’s seen 3 different gals popping in the door saying they were there for speech therapy.
I don't know if the rest of you are having trouble reaching this site or not but I certainly am. I have been trying to post for most of the evening. If I hadn't had trouble sleeping I would not be here at this time of day (excuse me, night) and writing you! The message has been written and sitting on my desktop I just couldn't get onto the site to log in and paste it.
Thanks for stopping by. . . hope you have a safe weekend.
Yesterday afternoon they shut off the electricity in Jon’s room so they could install a special power strip in his room. . . just not enough outlets for all the electrical stuff he and his room mate need and 3 cords were stretching across the pathway. As if that wasn’t enough if respiratory needed to suction him they had to unplug one of the other items. And occasionally they have forgotten to replug what they took out. This staff is really overloaded. No one had been down as of the time I left on Friday to rearrange all the plugs so 3 cords were still crossing between the end of the bed and the wall.
We had been spoiled by the last speech therapist. He was assigned to Michelle and unless he missed a day and was making it up on the weekend she was the only therapist he saw. So far this week I think he’s seen 3 different gals popping in the door saying they were there for speech therapy.
I don't know if the rest of you are having trouble reaching this site or not but I certainly am. I have been trying to post for most of the evening. If I hadn't had trouble sleeping I would not be here at this time of day (excuse me, night) and writing you! The message has been written and sitting on my desktop I just couldn't get onto the site to log in and paste it.
Thanks for stopping by. . . hope you have a safe weekend.
Friday, May 22, 2009
Another Physical Therapy First
Physical therapy has been using a tilt table with Jon for the last several weeks to get him into a standing position. This allows blood vessels to constrict and relax in different ways than when he is lying down or sitting up. He has been upright about ten minutes at a time. They have also been working with balancing while sitting on the edge of the bed. Wednesday he sat without any support for almost a minute. They have been teaching him how to tilt his head forward and backward to keep from falling in those directions. Thursday they tried electrical stimulation on the muscles of his legs. Carol was so excited to see how the muscles actually moved. Josh (the physical therapist) explained that that means the nerve passages are still intact so in addition to developing some muscle mass the ability to move his legs would be possible if the spinal cord develops new pathways or regains some function in that area. I'll settle for developing muscle mass at this point!
Jon has been doing some arm and hand exercises on his own. He was so pleased to show me how high he could raise his arm when I came back on Tuesday that I thought I was going to get hit on the chin! He has found a way to use one thumb to stretch the other thumb which is great since they seem to be really tight. Occupational therapy has been working with pegs about the size of the control knob on some of the scooters I've seen at the hospital. He has to pick them up and place them in the holes on a board.
Jon's health seems to be a little better. I've been supplementing his medication with some DanActive probiotic drinks to help all those struggling good bacteria in his digestive system (which does seem to be acting better.) I've also been encouraging him to eat as much of his meal as possible. He has gained some weight--enough that they have cut his food formula for tube feedings from 1.7 calories per mL to 1.5. I have also been encouraging him to feed himself. Yesterday I cut up his hot dog in bite size pieces and left him on his own which startled both Carol and him. I had been irritated with his refusal to eat any of the bun--there is something about the texture of bread that is really bothering him. Anyway, Carol reported that the first few bites were a little shaky but the rest went pretty well. He ate all the hot dog, some of the baked beans and half of the potato salad--neither of which are on his list of favorites. I have been trying to encourage the rethinking of food. . . some of it is pleasurable and some is not but all of it is fuel and you need fuel whether you like it or not! In an effort to keep on my good side in this respect he even tried pickled beets which are definitely not on his dietary list of favorites--but is on mine!
Bedsore seems to be getting better--new one developing near it. Nursing staff says too much sitting upright I say too many pillows under the knees in an effort to ward off sores on his feet. We have special boots for that which they don't use in the day time....unless someone forgets to take them off in the morning (night crew puts them on at bedtime.) We asked that the TV be put on the wall mount instead of the night stand so that it is possible to lay him back further and still view it. They did that rather promptly. We also are lowering the entire bed which makes viewing easier.
Got to run..this is Barb's last day with kids and she really wanted me to stop by and see them. I think I've already missed the chance to see Jon on the tilt board. Hope you have a good and safe holiday weekend.
Jon has been doing some arm and hand exercises on his own. He was so pleased to show me how high he could raise his arm when I came back on Tuesday that I thought I was going to get hit on the chin! He has found a way to use one thumb to stretch the other thumb which is great since they seem to be really tight. Occupational therapy has been working with pegs about the size of the control knob on some of the scooters I've seen at the hospital. He has to pick them up and place them in the holes on a board.
Jon's health seems to be a little better. I've been supplementing his medication with some DanActive probiotic drinks to help all those struggling good bacteria in his digestive system (which does seem to be acting better.) I've also been encouraging him to eat as much of his meal as possible. He has gained some weight--enough that they have cut his food formula for tube feedings from 1.7 calories per mL to 1.5. I have also been encouraging him to feed himself. Yesterday I cut up his hot dog in bite size pieces and left him on his own which startled both Carol and him. I had been irritated with his refusal to eat any of the bun--there is something about the texture of bread that is really bothering him. Anyway, Carol reported that the first few bites were a little shaky but the rest went pretty well. He ate all the hot dog, some of the baked beans and half of the potato salad--neither of which are on his list of favorites. I have been trying to encourage the rethinking of food. . . some of it is pleasurable and some is not but all of it is fuel and you need fuel whether you like it or not! In an effort to keep on my good side in this respect he even tried pickled beets which are definitely not on his dietary list of favorites--but is on mine!
Bedsore seems to be getting better--new one developing near it. Nursing staff says too much sitting upright I say too many pillows under the knees in an effort to ward off sores on his feet. We have special boots for that which they don't use in the day time....unless someone forgets to take them off in the morning (night crew puts them on at bedtime.) We asked that the TV be put on the wall mount instead of the night stand so that it is possible to lay him back further and still view it. They did that rather promptly. We also are lowering the entire bed which makes viewing easier.
Got to run..this is Barb's last day with kids and she really wanted me to stop by and see them. I think I've already missed the chance to see Jon on the tilt board. Hope you have a good and safe holiday weekend.
Sunday, May 17, 2009
New development
Jon's former roommate is now next door. His wife(the roommates) came over to see how Jon was doing. She talked to him for a few minutes and her grandson came over to see where she was. The grandkids came over and were talking to Jon. The granddaughter asked Jon what happened and he told her he was in a motorcycle accident. The grandson was interested in all the machinery that Jon is hooked up to and was checking it all out. Jon enjoyed their visit.
Jon was in a good mood when I got there today. Dad went up after church and fed him lunch so I took time to mow my grass. It was knee high. I had to mow each row twice. When I finally got to see Jon asked me about my "jungle". He asked "Did you hear Tarzan yelling in your yard" and did the Tarzan yell. "Did he say Me Tarzan, you Jane?" It was really nice to laugh with Jon.
Jon has the start of another bed sore on his bottom. Opposite side of first one. It started out as just a red spot and they put a "second skin" on it. Today we noticed that the bandage was soiled and starting to come off. When they changed the bandage, we saw that the skin was broken. It's not much but it is the start of a new sore. Once the skin breaks it can develop quickly. The night tech agreed to turn Jon early as much as he can throughout the night. Please pray that the sore does not get bigger. Jon asked "Why don't they have a wound vac on it?" I told him that it wasn't big enough for a wound vac. That would not be pretty, one on each side.
The trial wheel chair has not shown up yet. I wanted to get him in a wheel chair and outside as it was so nice today but he didn't want to and it didn't work out with turning and eating schedules. I hope to get him outside sometime. I think that being out in the sun would so nice. Hopefully the weather will cooperate.
Thank you for checking in and keep praying.
Jon was in a good mood when I got there today. Dad went up after church and fed him lunch so I took time to mow my grass. It was knee high. I had to mow each row twice. When I finally got to see Jon asked me about my "jungle". He asked "Did you hear Tarzan yelling in your yard" and did the Tarzan yell. "Did he say Me Tarzan, you Jane?" It was really nice to laugh with Jon.
Jon has the start of another bed sore on his bottom. Opposite side of first one. It started out as just a red spot and they put a "second skin" on it. Today we noticed that the bandage was soiled and starting to come off. When they changed the bandage, we saw that the skin was broken. It's not much but it is the start of a new sore. Once the skin breaks it can develop quickly. The night tech agreed to turn Jon early as much as he can throughout the night. Please pray that the sore does not get bigger. Jon asked "Why don't they have a wound vac on it?" I told him that it wasn't big enough for a wound vac. That would not be pretty, one on each side.
The trial wheel chair has not shown up yet. I wanted to get him in a wheel chair and outside as it was so nice today but he didn't want to and it didn't work out with turning and eating schedules. I hope to get him outside sometime. I think that being out in the sun would so nice. Hopefully the weather will cooperate.
Thank you for checking in and keep praying.
Thursday, May 14, 2009
The Good, the Bad, and the Ugly
I wanted to write over the week-end about Jon’s visit by Abby, the therapy dog, but somehow I just did some grocery shopping, attended church and puttered around the house. This is probably the third week that Abby has visited Jon’s room. I put the bed down as low as possible so Jon could see her well. He petted her and she decided to get a little closer and put her front paws up on the bed so she could lick his hands. I think Jon had forgotten her past visits as he said afterwards that he was a little concerned that she might bite. This from a dog that seems one of the gentlest I’ve ever seen--and therapy dogs have to pass rigorous tests before they’re allowed to visit. Her owner is a lady who I'm guessing is in her late seventies and I think she said this is her second therapy dog. I have a picture on my cell phone and hopefully I can get Angelique to put it up for me…there is a limit to my digital skills.
Jon has been enjoying his time with the speech therapist. She is the first to work with Jon on cognitive skills and he will miss her. Tomorrow is her last day in Columbus and she moves on to another assignment; one closer to Virginia where her family and friends are. She was on a 13 week assignment here and will spend another 13 weeks at her next assignment. Occupational therapy has Jon working with plastic pegs so that he will be able to maneuver his "boat" with a joystick. I finally found a way to soak his fingernails in warm sudsy water and gave him a very amateurish manicure. Mostly I cleaned the gunk out from under his nails and trimmed both hands. Usually he gets pretty tired by the time one hand is done but this time I could get both sets done. We finally received word from the neurologist saying our appointment was set for June 18 so we will finally get some idea about when the neck brace will come off and whether he will still need some kind of stiff foamy collar. You might pray for a coolish spring and early summer as he spends a lot of time sweating as it is. I can almost wring the moisture out of the pads of the brace when I change them for fresh ones. Another set is being ordered thank goodness.
As the day wore on I noticed that Jon was requiring more suctioning than normal and at first I wrote it off as the result of resuming milk to his menus. But as I was shaving him (electric razor) I noticed that that he was shivering--at that stage just seemed like a vibration. A little later he was downright shaking and I asked the nurse to take his temperature. 102.1--this from a guy whose normal temp runs around 97.8! We really got some action. An x-ray was ordered for his chest, blood was drawn for cultures, urine was taken for testing and he was given Tylenol and deprocote.
When we came in on Wednesday we were given the results from the x-ray which showed he has pneumonia in his lower lobe of the right lung. They also had an x ray taken of his stomach which had become quite swollen. The poor staff was kept busy with changes and they speculated that he was allergic to the medicine they started the previous evening. It was pretty apparent though based on the smell and the flow that he again has c diff, an infection of the bowels. He had just finished the last of the treatment 3 days ago and it is back again. This is unofficial but they’ve started administering flagel again which is what they used the last time. He slept most of the day. They stopped the feeding tube in the hope that that would slow things down, which it did and he wasn’t hungry at all at lunch or supper. He did eat some jello and sherbert.
Today he’s feeling much better. People who haven’t seen him for a week commented on how good he looks. The respiratory therapist felt he was in better spirits Monday and Tuesday than he had been for a while. He dictated a really nice note to Michelle, (speech therapist) great guy that he is. He even signed it and in cursive to boot! He was on the tilt board again today. Was in a standing position for 10 minutes which allowed the occupational therapist a chance to work his arms in all the positions that rails on a bed don’t allow.
I’m still working on the staff. Their idea of cleanliness is far different than mine and heaven knows I’m not nearly as picky as a lot of people I know! And they crossed the line way before they left soiled linens on the register for the air conditioning! I’ll continue to work on it…
So much for the ugly! I’ll take this across the street so I can post it while Jon is napping. Thanks for checking in.
Well I tried to post there but the internet connection wouldn't cooperate. I'm having difficulty with both Barb's computer and mine. On her computer I can read my mail but I can't reply, forward or compose. On my computer I can get the listings in the inbox but none of the messages show up!
Thanks again for checking in..g'night.
Jon has been enjoying his time with the speech therapist. She is the first to work with Jon on cognitive skills and he will miss her. Tomorrow is her last day in Columbus and she moves on to another assignment; one closer to Virginia where her family and friends are. She was on a 13 week assignment here and will spend another 13 weeks at her next assignment. Occupational therapy has Jon working with plastic pegs so that he will be able to maneuver his "boat" with a joystick. I finally found a way to soak his fingernails in warm sudsy water and gave him a very amateurish manicure. Mostly I cleaned the gunk out from under his nails and trimmed both hands. Usually he gets pretty tired by the time one hand is done but this time I could get both sets done. We finally received word from the neurologist saying our appointment was set for June 18 so we will finally get some idea about when the neck brace will come off and whether he will still need some kind of stiff foamy collar. You might pray for a coolish spring and early summer as he spends a lot of time sweating as it is. I can almost wring the moisture out of the pads of the brace when I change them for fresh ones. Another set is being ordered thank goodness.
As the day wore on I noticed that Jon was requiring more suctioning than normal and at first I wrote it off as the result of resuming milk to his menus. But as I was shaving him (electric razor) I noticed that that he was shivering--at that stage just seemed like a vibration. A little later he was downright shaking and I asked the nurse to take his temperature. 102.1--this from a guy whose normal temp runs around 97.8! We really got some action. An x-ray was ordered for his chest, blood was drawn for cultures, urine was taken for testing and he was given Tylenol and deprocote.
When we came in on Wednesday we were given the results from the x-ray which showed he has pneumonia in his lower lobe of the right lung. They also had an x ray taken of his stomach which had become quite swollen. The poor staff was kept busy with changes and they speculated that he was allergic to the medicine they started the previous evening. It was pretty apparent though based on the smell and the flow that he again has c diff, an infection of the bowels. He had just finished the last of the treatment 3 days ago and it is back again. This is unofficial but they’ve started administering flagel again which is what they used the last time. He slept most of the day. They stopped the feeding tube in the hope that that would slow things down, which it did and he wasn’t hungry at all at lunch or supper. He did eat some jello and sherbert.
Today he’s feeling much better. People who haven’t seen him for a week commented on how good he looks. The respiratory therapist felt he was in better spirits Monday and Tuesday than he had been for a while. He dictated a really nice note to Michelle, (speech therapist) great guy that he is. He even signed it and in cursive to boot! He was on the tilt board again today. Was in a standing position for 10 minutes which allowed the occupational therapist a chance to work his arms in all the positions that rails on a bed don’t allow.
I’m still working on the staff. Their idea of cleanliness is far different than mine and heaven knows I’m not nearly as picky as a lot of people I know! And they crossed the line way before they left soiled linens on the register for the air conditioning! I’ll continue to work on it…
So much for the ugly! I’ll take this across the street so I can post it while Jon is napping. Thanks for checking in.
Well I tried to post there but the internet connection wouldn't cooperate. I'm having difficulty with both Barb's computer and mine. On her computer I can read my mail but I can't reply, forward or compose. On my computer I can get the listings in the inbox but none of the messages show up!
Thanks again for checking in..g'night.
Tuesday, May 5, 2009
New Room!!
Sorry for posting so late at night.
Sunday Mom, Jon and I played 3 handed turn up euchre. Jon prefers bid euchre but I'm not good at bidding so he agreed to turn-up. Before the accident it was hard to get him to play with us at home. He was always playing so much with his friends. It's nice to have him play with us. We don't keep a written score but Jon seems to keep track on his own.
Jon is not a yogurt fan but Mom has talked him into trying the Probiotic yogurt to help with his bowels. He tolerated it but didn't like it. He has not wanted to eat anything that he doesn't like the taste of. Mom has been trying to get him to understand that he needs to eat for nutrition and not just taste if we are going to get the bedsore healed. I am proud of him as he is eating more even if he doesn't like it. Yesterday (Monday) his bowels were thicker than before (sorry if that is tmi) which is a good thing. Solid food seems to be helping. It's been liquid in, liquid out for so long.
Yesterday (Monday) Jon was moved to a new room. He was originally in a room intended for a ventilator. They had 2 people coming that needed a vent so he was moved out. He stayed on the same floor. His new roommate came at 11:00pm!!! There was quite the confusion. While Jon is not on a vent, he has 7 different plugs and there were spots for only 6 things to be plugged in. That is with taping a cord on the floor and having 2 stretched and taped over the air conditioning unit. That means that either his IV or his suction machine is unplugged at a time. Carol just informed me that the new neighbor is sharing a plug with Jon. The neighbor's feeding tube (which is battery backup) needed to be charged so one of Jon's machines, which is also battery backup, was unplugged. This is going to be very interesting and hopefully not harmful.
I had a class tonight so I didn't see him tonight. Mom and Carol came down this afternoon. They played 3 handed turn-up euchre. They only played 6 hands before Jon was done. Mom won 3, Jon won 2 and Carol 1. He did not eat very well today. He likes his salads. Apparently he demanded to have a salad for breakfast!!!! They forgot one at dinner and had to have one sent up. He eats it first. Carol told Mom about a liquid Probiotic. They picked some up and he did better drinking the 3 ounces instead of eating the 4 ounces. While 4 ounces isn't a lot, he eats smaller bites. He was having some trouble breathing today.
Jon is due to have a shower at midnight tonight. It has been a week since his last shower. He isn't too enthused about having one at midnight. He was measured for his hand braces (as they lost his original ones) today. Tomorrow he is being measured for a special power wheel chair. It will be a "Tilt in space" which means that he can relieve his pressure by tilting back. He will also have a special cushion to help with the bed sore.
Sunday Mom, Jon and I played 3 handed turn up euchre. Jon prefers bid euchre but I'm not good at bidding so he agreed to turn-up. Before the accident it was hard to get him to play with us at home. He was always playing so much with his friends. It's nice to have him play with us. We don't keep a written score but Jon seems to keep track on his own.
Jon is not a yogurt fan but Mom has talked him into trying the Probiotic yogurt to help with his bowels. He tolerated it but didn't like it. He has not wanted to eat anything that he doesn't like the taste of. Mom has been trying to get him to understand that he needs to eat for nutrition and not just taste if we are going to get the bedsore healed. I am proud of him as he is eating more even if he doesn't like it. Yesterday (Monday) his bowels were thicker than before (sorry if that is tmi) which is a good thing. Solid food seems to be helping. It's been liquid in, liquid out for so long.
Yesterday (Monday) Jon was moved to a new room. He was originally in a room intended for a ventilator. They had 2 people coming that needed a vent so he was moved out. He stayed on the same floor. His new roommate came at 11:00pm!!! There was quite the confusion. While Jon is not on a vent, he has 7 different plugs and there were spots for only 6 things to be plugged in. That is with taping a cord on the floor and having 2 stretched and taped over the air conditioning unit. That means that either his IV or his suction machine is unplugged at a time. Carol just informed me that the new neighbor is sharing a plug with Jon. The neighbor's feeding tube (which is battery backup) needed to be charged so one of Jon's machines, which is also battery backup, was unplugged. This is going to be very interesting and hopefully not harmful.
I had a class tonight so I didn't see him tonight. Mom and Carol came down this afternoon. They played 3 handed turn-up euchre. They only played 6 hands before Jon was done. Mom won 3, Jon won 2 and Carol 1. He did not eat very well today. He likes his salads. Apparently he demanded to have a salad for breakfast!!!! They forgot one at dinner and had to have one sent up. He eats it first. Carol told Mom about a liquid Probiotic. They picked some up and he did better drinking the 3 ounces instead of eating the 4 ounces. While 4 ounces isn't a lot, he eats smaller bites. He was having some trouble breathing today.
Jon is due to have a shower at midnight tonight. It has been a week since his last shower. He isn't too enthused about having one at midnight. He was measured for his hand braces (as they lost his original ones) today. Tomorrow he is being measured for a special power wheel chair. It will be a "Tilt in space" which means that he can relieve his pressure by tilting back. He will also have a special cushion to help with the bed sore.
Friday, May 1, 2009
Reflections
It’s a week like this that makes me realize how impatient I can be sometimes. Last Friday I reported Jon’s hand splints missing and left a note for the occupational therapist that we would need new ones. I arrived late in the afternoon on Monday and she said we’d wait for a few days to see if they turn up as that does happen sometimes. Wednesday she said that she’d get her rep on Monday to measure Jon for new hand splints. Yesterday she measured him to see if any of the splints she has on hand would do until the new ones arrived. She had one for one hand and had to order one for the other…and the rep won’t be here until Tuesday. On Wednesday if all goes as planned a factory rep will come and measure Jon for a wheelchair which I gather will have lots of bells and whistles. He’ll need one that will have a pressure release, tilts backward, is a little higher on the back to support his head, etc. It will be more like a scooter than a wheelchair and will take 2-3 months to arrive. Dodd Hall was going to order one but we weren’t there long enough. We’ve been here at CRSI for a full month now. It doesn’t seem possible!
Towards the middle of last week Jon was started on still another round of antibiotics. This time for a urinary tract infection. They ran some other tests on his stool since we’ve been having a running battle with diarrhea. At that time the test came back negative for any problems but this week they were positive for something called c diff. This is when you’ve had so many antibiotics that they’ve started attacking good bacteria in addition to the “germy” ones. The balance of good and bad bacteria becomes out of sync. Ironically the way to fix the problem is with still another kind of antibiotic! We’re going to add yogurt to his diet and see if that doesn’t speed the healing process.
The wound doctor changed his mind about how well the VAC had been doing on Jon’s bedsore. It is about the same size in diameter but has gone even deeper. Without the clear bandage that the VAC dressing has it has been difficult to keep the gauze dressing clean and I was positive the doctor would not be pleased. My biggest regret is that we’ve lost two weeks in the healing process.
A reflection on Jon’s progress shows that while it has been slow going the progress is significant. Originally the doctors in Fort Wayne thought Jon would never be off a ventilator. He has had his trach capped for 4 weeks now, long enough for the therapist to ask if we’d thought about removing the trach. While we’re delighted that that is a possibility we’re uncomfortable remembering the times when out of the blue he has a huge drop in oxygen saturation and he’s had to go back on the ventilator…sometimes for just a few days but he’d have to have a new tracheotomy if this happened again.
Jon has once again worked his way up to real food and has learned to use a spoon to eat some foods--he’s working on the fork but I have visions of his stabbing the roof of his mouth with the tongs. He can’t quite get the fork up high enough yet. This week he has been very shaky and the food falls often enough that he gets discouraged. The occupational therapist and I have noticed that his arms very in flexibility. Some days his left arm moves more easily than the right and other days it’s reversed. She says this is quite common and to be expected.
It has been just a little over 6 months since the accident and while the progress has seemed extremely slow it is significant and on the whole better than the doctors predicted in Fort Wayne. It would be nice if these other health problems would dwindle out but in reality I’m afraid they are here for good. (There must have been a different way to teach me patience and convince Jon to give up smoking anything and drinking!)
Towards the middle of last week Jon was started on still another round of antibiotics. This time for a urinary tract infection. They ran some other tests on his stool since we’ve been having a running battle with diarrhea. At that time the test came back negative for any problems but this week they were positive for something called c diff. This is when you’ve had so many antibiotics that they’ve started attacking good bacteria in addition to the “germy” ones. The balance of good and bad bacteria becomes out of sync. Ironically the way to fix the problem is with still another kind of antibiotic! We’re going to add yogurt to his diet and see if that doesn’t speed the healing process.
The wound doctor changed his mind about how well the VAC had been doing on Jon’s bedsore. It is about the same size in diameter but has gone even deeper. Without the clear bandage that the VAC dressing has it has been difficult to keep the gauze dressing clean and I was positive the doctor would not be pleased. My biggest regret is that we’ve lost two weeks in the healing process.
A reflection on Jon’s progress shows that while it has been slow going the progress is significant. Originally the doctors in Fort Wayne thought Jon would never be off a ventilator. He has had his trach capped for 4 weeks now, long enough for the therapist to ask if we’d thought about removing the trach. While we’re delighted that that is a possibility we’re uncomfortable remembering the times when out of the blue he has a huge drop in oxygen saturation and he’s had to go back on the ventilator…sometimes for just a few days but he’d have to have a new tracheotomy if this happened again.
Jon has once again worked his way up to real food and has learned to use a spoon to eat some foods--he’s working on the fork but I have visions of his stabbing the roof of his mouth with the tongs. He can’t quite get the fork up high enough yet. This week he has been very shaky and the food falls often enough that he gets discouraged. The occupational therapist and I have noticed that his arms very in flexibility. Some days his left arm moves more easily than the right and other days it’s reversed. She says this is quite common and to be expected.
It has been just a little over 6 months since the accident and while the progress has seemed extremely slow it is significant and on the whole better than the doctors predicted in Fort Wayne. It would be nice if these other health problems would dwindle out but in reality I’m afraid they are here for good. (There must have been a different way to teach me patience and convince Jon to give up smoking anything and drinking!)
Monday, April 27, 2009
New Pictures & How to Post a Comment
Hey everyone- be sure to check out the new pictures on the right. Uncle J really looks like he enjoys the tilt board! Also- I have heard word that there are a few people who would like to comment on posts, but aren't sure how. Below each post there is the word "comments" and a number- the number tells how many comments have been posted for that particular posting. To post your own comment, click on the word "comments". A new window should appear, here you should see any comments that have been left and also a see a text box that has "Leave your comments" at the top. Click in this text box and type your comment. Below the box, it says "Choose an identity", if you don't have a Google account, simply check the field for "Name/URL" and a field will appear for you to type your name. You can also check "Anonymous", but if you do, be sure to put your name with your comments in the "Leave your comment" section so that we can tell Uncle J who all has been stopping by and sending messages his way. When finished, click the orange "Publish your comments" bar at the bottom. I hope this is helpful, but if not- get in touch with me (any one of the family can give you my info) and I can see if I can help you through it. Thanks again for checking in!
Sunday, April 26, 2009
A Quiet Day
Friday Jon was up on the tilt board again. He really enjoys it. Mom took pictures of him on it using her cell phone which Angelique will post tomorow. Saturday and Sunday were pretty relaxing. His room gets the morning sun and got pretty hot. Sunday around one o'clock, he was sweating alot. I was wiping off the sweat every 10-15 minutes. After an hour of wiping off the sweat, I went out and found the nurse. She took his temp and it was 99.1. Since Jon runs low to start with that is more like 100.1 to us. As the afternoon went on and the room cooled down, he stopped sweating. He did some breathing and arm exercises. All in all he was really quiet today. I asked him if he was okay, that he was really quiet and he said he was fine.
If the weather is nice this week, in the 70's and not so humid, I would like to take him outside for a while. The 80's are just too hot and it was humid. It is hard for me with asthma to breath when it's humid and I didn't want to chance it with his breathing. Then with his temp being up and sweating already, I didn't ask to take him out.
That's all for now. Thanks for checking in and keep up the prayers.
If the weather is nice this week, in the 70's and not so humid, I would like to take him outside for a while. The 80's are just too hot and it was humid. It is hard for me with asthma to breath when it's humid and I didn't want to chance it with his breathing. Then with his temp being up and sweating already, I didn't ask to take him out.
That's all for now. Thanks for checking in and keep up the prayers.
Thursday, April 23, 2009
Look at me...I'm standing! Kinda...
I had a post all ready to go late last week in which I sounded really discouraged. Jon just didn’t seem to have any energy. He had been sweating a lot last week but not running a fever, that is one that is considered normal fever for others, but he’s usually a degree below normal. Many of the people coming in the room complained of it being on the cool side since we had turned on the air conditioning. During the week-end he started to run a higher temperature but not near the 101 degrees needed for treatment. They did run tests for urinary tract and bowel infections but everything came back negative. He’s needed a little more suctioning and I’m running my normal congestion “thingy” where I can never decide if I have a cold or it’s allergies kicking in. At this time of year it could well be allergies but we’re both complaining of a sore throat in the morning.
He’s been very excited with his new physical therapy regime. He’s strapped to a tilt board which allows him to be raised to a standing position. As you can imagine he is absolutely thrilled with the feeling of standing! He likes it to go as high as possible which the therapist said scares her when she's on it because she thinks she's going to fall over. Occupational therapy came in today to see how well he was feeding himself. She talked him into trying to eat his salad with a fork. Up to now we’ve encouraged him to eat things like mashed potatoes and meatloaf with a spoon which is a little easier to control and then we feed him his salad. Carol has been here this week and she has noticed that his bites are getting a little larger so he is developing more confidence in himself (Barb noticed his bites started getting bigger over last weekend but forgot to say something to anyone). They are ordering some kind of extension that will allow him to pick up a cup so he can get drinks for himself. It seems he drives the staff crazy with his constant requests for a drink of water. While Barb was there tonight she noticed that he is asking for more water than usual so tonight maybe more interesting than normal for night time staff.
The speech therapist has been spending a good half hour working with him on cognitive skills. She may have him make a new word of an old one by rearranging all the letters, making “ate” into “eat” for example. Repeating a series of words and listening to paragraphs and answering questions on the information given are some other exercises. Yesterday she managed to extend the session to 45 minutes and I think she’s going for at least that today. I’m using that time to type this post. (The therapist is really interesting. She is a traveling speech therapist and is hired on a 13 week basis and then goes on to a different job in a different town. This is her second move and she’s finding it hard to leave the new friends she has made.--I would, too.)
We’re still being frustrated in having to constantly remind the aides of the turnings but there are times when time gets away from us and then we notice it is well over 2 hours since the last turn. The wound doctor took him off the VAC because he didn’t like how the wound was progressing. We think it is getting bigger and don’t like the progress that silvadene and bactroban is making. It's harder to keep the dressing clean since it is not vacuum sealed. It had already been changed twice today and when Barb left tonight it had to be changed again due to the awkward place it is located.
I’ve made up a chart to remind me of all the different exercises he should be doing at various times throughout the day. It also helps to pass the time. We didn’t finish The Kite Runner and I started Holes but while he says he likes the sound of my voice it does a better job in putting him to sleep. The book cart came around today and he picked another western but I only got through a page and a half of the last western he thought he wanted to hear and he was asleep again--some excitement!!
His favorite past time when Carol is here is going through her list of his friend’s phone numbers and goes through it talking to as many who are home….and up and around. He really enjoys talking to his buddies and it lifts his spirits. It’s too bad he can’t manage the phone in his room yet. We’ve found a way to tuck our cell phone in his neck brace which allows us to be able to walk out of the room and let him talk to his heart’s content. The phone disconnects when the recipient hangs up so we don’t have to worry about being billed for dead air time. You can call home to get my cell phone number if you want to call him sometime. I’m here throughout the week and Barb and her dad are here a lot in the evenings and over the week-end.
We are getting somewhere in reducing the medications he is taking. They took him off a rather powerful one and I’m anxious to see how much difference, if any, it makes in his mood. I so long for some spark in his eyes and some hint of determination. This is the second set of staff that have asked who wants him to go to Dodd Hall more, Jon or us… so it’s not just us in sensing a lack of enthusiasm. Warmer weather is coming and we can get him outside. We’re hoping the change of scenery and the tilt board will get him rolling.
Thanks for checking in.
He’s been very excited with his new physical therapy regime. He’s strapped to a tilt board which allows him to be raised to a standing position. As you can imagine he is absolutely thrilled with the feeling of standing! He likes it to go as high as possible which the therapist said scares her when she's on it because she thinks she's going to fall over. Occupational therapy came in today to see how well he was feeding himself. She talked him into trying to eat his salad with a fork. Up to now we’ve encouraged him to eat things like mashed potatoes and meatloaf with a spoon which is a little easier to control and then we feed him his salad. Carol has been here this week and she has noticed that his bites are getting a little larger so he is developing more confidence in himself (Barb noticed his bites started getting bigger over last weekend but forgot to say something to anyone). They are ordering some kind of extension that will allow him to pick up a cup so he can get drinks for himself. It seems he drives the staff crazy with his constant requests for a drink of water. While Barb was there tonight she noticed that he is asking for more water than usual so tonight maybe more interesting than normal for night time staff.
The speech therapist has been spending a good half hour working with him on cognitive skills. She may have him make a new word of an old one by rearranging all the letters, making “ate” into “eat” for example. Repeating a series of words and listening to paragraphs and answering questions on the information given are some other exercises. Yesterday she managed to extend the session to 45 minutes and I think she’s going for at least that today. I’m using that time to type this post. (The therapist is really interesting. She is a traveling speech therapist and is hired on a 13 week basis and then goes on to a different job in a different town. This is her second move and she’s finding it hard to leave the new friends she has made.--I would, too.)
We’re still being frustrated in having to constantly remind the aides of the turnings but there are times when time gets away from us and then we notice it is well over 2 hours since the last turn. The wound doctor took him off the VAC because he didn’t like how the wound was progressing. We think it is getting bigger and don’t like the progress that silvadene and bactroban is making. It's harder to keep the dressing clean since it is not vacuum sealed. It had already been changed twice today and when Barb left tonight it had to be changed again due to the awkward place it is located.
I’ve made up a chart to remind me of all the different exercises he should be doing at various times throughout the day. It also helps to pass the time. We didn’t finish The Kite Runner and I started Holes but while he says he likes the sound of my voice it does a better job in putting him to sleep. The book cart came around today and he picked another western but I only got through a page and a half of the last western he thought he wanted to hear and he was asleep again--some excitement!!
His favorite past time when Carol is here is going through her list of his friend’s phone numbers and goes through it talking to as many who are home….and up and around. He really enjoys talking to his buddies and it lifts his spirits. It’s too bad he can’t manage the phone in his room yet. We’ve found a way to tuck our cell phone in his neck brace which allows us to be able to walk out of the room and let him talk to his heart’s content. The phone disconnects when the recipient hangs up so we don’t have to worry about being billed for dead air time. You can call home to get my cell phone number if you want to call him sometime. I’m here throughout the week and Barb and her dad are here a lot in the evenings and over the week-end.
We are getting somewhere in reducing the medications he is taking. They took him off a rather powerful one and I’m anxious to see how much difference, if any, it makes in his mood. I so long for some spark in his eyes and some hint of determination. This is the second set of staff that have asked who wants him to go to Dodd Hall more, Jon or us… so it’s not just us in sensing a lack of enthusiasm. Warmer weather is coming and we can get him outside. We’re hoping the change of scenery and the tilt board will get him rolling.
Thanks for checking in.
Wednesday, April 15, 2009
Vrooom Vroom
The occupational therapist (works on arms and hands) was as impressed as I hoped she would be with Jon's range of motion in his arms when she came yesterday. If he has his hand splints on, which come out about a half inch past his fingers, he can rub the side of his nose and his chin. When the physical therapist came in (works on legs and feet) Jon stretched out his arms and held them like he was holding onto the handlebars of his bike, "squeezed" his hands as best he could and went "vroom, vroom." We all got a big chuckle out of that. They helped him up to sit on the side of the bed so he could practice balancing himself. They showed him how to use the bed railing to help. He was able to sit for 10-12 minutes before getting tired. They want to get him downstairs so he can be put on the tilt board and get better exercise of his arms--there's just so few things you can do when you have bed supports in your way.
He continues to try to feed himself. He takes as many bites by himself as he can manage and then whoever is with him feeds him the rest. His appetite is better or his resistance is slacking off--whichever it is he's eating more. It's still not good but better.
These are things that staff doesn't see and don't realize what a big deal it is. Yesterday was the first meeting we've had with representatives of all the facets of services. Their big complaint was his lack of motivation and lack of sleep. We've always assumed a lot of his sleep problems with whatever facility we were in was because he has always preferred third shift and is somewhat a night owl. They have thought it was anxiousness and tried medicating him....When I checked with Jon about his sleep habits it turns out he never really slept more than 4 -5 hours at a time normally. So when I leave him at 9 and he's pretty sleepy then of course he's going to be awake about 2-3 in the morning and they don't know what to do with him!
Must run..I'm late getting off to the hospital.
Talk some more later.
He continues to try to feed himself. He takes as many bites by himself as he can manage and then whoever is with him feeds him the rest. His appetite is better or his resistance is slacking off--whichever it is he's eating more. It's still not good but better.
These are things that staff doesn't see and don't realize what a big deal it is. Yesterday was the first meeting we've had with representatives of all the facets of services. Their big complaint was his lack of motivation and lack of sleep. We've always assumed a lot of his sleep problems with whatever facility we were in was because he has always preferred third shift and is somewhat a night owl. They have thought it was anxiousness and tried medicating him....When I checked with Jon about his sleep habits it turns out he never really slept more than 4 -5 hours at a time normally. So when I leave him at 9 and he's pretty sleepy then of course he's going to be awake about 2-3 in the morning and they don't know what to do with him!
Must run..I'm late getting off to the hospital.
Talk some more later.
Monday, April 13, 2009
Little Moments
On Saturday, Uncle Greg and I went to visit Uncle J at his new digs. It was the first time I had been there and I asked Uncle J if he had gotten to go for a walk at the facility yet, to which I got a smirk and an, "I can't exactly walk." I replied, "I know that dork, I meant in a wheelchair." He said, "No I haven't got to go for a 'walk' yet, dorkette." **smile** It made me laugh; it's just the little things...I hope it brings you a little smile too! G'night!
A Step in the Right Direction
Jon had a big "first" today. We've been practicing raising his arm and hand high enough that he can touch his ear lobes and today I put a spoon holder in Jon's hand and helped him with his first bite of food at supper. He took 3-4 more bites on his own with pretty good control of the spoon. Our informal occupational therapy is paying off! While he was sitting in a chair-his only activity for physical therapy- we tried stacking some blocks Carol had bought for him and he made a tower about 5 inches high! He also tried to write his name. He wanted to start to write in cursive but I suggested just printing. If he could have held the pen at the right angle it would have worked since the letter formation of his letters was right on. We are finally getting back to about where we were when we left Green Springs 2 months ago. The wound doctor is coming tomorrow and I'm anxious to see how the bed sore is progressing.
Hopefully we'll see more progress in the coming days...keep your fingers crossed!
Thanks for dropping by.
Hopefully we'll see more progress in the coming days...keep your fingers crossed!
Thanks for dropping by.
Friday, April 10, 2009
Aaaaaah!!! Real Food!!!
Jon got the green light for real food yesterday. His first meal was beef stew, diced pears and a garden salad which looked a little sad to me but he loves salad, especially drowned in ranch dressing, and ate every bite. Didn't really have to count bites after the first few bites of stew. He even went back to eating stew after he was through with his salad. Tonight he passed up a fish sandwich for a hot dog, french fries and cole slaw. I thought I'd try the fish sandwich since we didn't have to work a trade for the hot dog and frankly he made a good choice...fish was cold and while it looked like it had been in the fryer plenty long it didn't taste good.
He was up in a chair for a while yesterday. We'll try to work those times in a chair with mealtimes since he's supposed to be sitting up as straight as possible when eating. I had a chance to talk with speech therapy today to try to coordinate with physical therapy since they're the ones who are supposed to be in charge off putting on the turtle shell he has to wear when sitting up straight. We're theorizing that may be part of the problem Jon has with choking since I'm not that sure he's been at a high enough angle when eating in the past.
We're exercising Jon's arms quite a bit and he's been good about asking them to be stretched throughout the day if we haven't done it often enough. We almost have them to the point where's his arms are at shoulder height.
Jon had a nice surprise when his Uncle Bob and Diane from Baltimore stopped in to visit on their way to Dearborn to spend some time with my Mother. We had a good visit with them. Diane brought homemade chocolate Easter eggs which we'll be more than glad to help him eat!
Hope your Easter is meaningful and your company good. Most of us will be in Defiance this holiday. We spent all of Christmas with Jon--took all the Christmas presents and even the special silver angel napkin holders to dress up the table but just can't quite do the same this holiday. Carol has to work at 3 and Sunday evening will be Joe's first night back to work at Campbells.
Night,
He was up in a chair for a while yesterday. We'll try to work those times in a chair with mealtimes since he's supposed to be sitting up as straight as possible when eating. I had a chance to talk with speech therapy today to try to coordinate with physical therapy since they're the ones who are supposed to be in charge off putting on the turtle shell he has to wear when sitting up straight. We're theorizing that may be part of the problem Jon has with choking since I'm not that sure he's been at a high enough angle when eating in the past.
We're exercising Jon's arms quite a bit and he's been good about asking them to be stretched throughout the day if we haven't done it often enough. We almost have them to the point where's his arms are at shoulder height.
Jon had a nice surprise when his Uncle Bob and Diane from Baltimore stopped in to visit on their way to Dearborn to spend some time with my Mother. We had a good visit with them. Diane brought homemade chocolate Easter eggs which we'll be more than glad to help him eat!
Hope your Easter is meaningful and your company good. Most of us will be in Defiance this holiday. We spent all of Christmas with Jon--took all the Christmas presents and even the special silver angel napkin holders to dress up the table but just can't quite do the same this holiday. Carol has to work at 3 and Sunday evening will be Joe's first night back to work at Campbells.
Night,
Wednesday, April 8, 2009
Making Some Headway
It seems that the people at the top really want to deliver on their policies but just don't have the staff to carry it out. The day may start out well enough but then things come up...like physical therapy might be going on when its time to turn so they'll come back later but then they themselves get involved in something else and they don't. Bill wants to remind them on the dot of two hours and I try to give them a chance and wait 20-30 minutes and then it ends up being 3 hours between turnings.
I am much happier with the bathing here. It seemed rather helter skelter at the other place. Here he gets a real honest to goodness hosed down bath every Tuesday and Friday and sponge baths daily. (It was the real baths we missed at the other place and I'm sure that even though we spend a lot of time at these places it is possible to work in sponge baths when we aren't there--he once got one around midnight.)
The bedsore seems to be getting smaller--half a centimeter isn't much but its a step in the right direction!
I'm trying to get Jon to eat more and requiring a certain number of bites at a meal--doesn't matter which food and he can certainly eat more than the required number which he occasionally does. Tonight he had a pureed tuna sandwich that even I thought had too much dressing and vinegar, Italian wedding soup, pureed pumpkin with cool whip, and tomato juice. One bite tuna, the rest went to the soup!
I am much happier with the bathing here. It seemed rather helter skelter at the other place. Here he gets a real honest to goodness hosed down bath every Tuesday and Friday and sponge baths daily. (It was the real baths we missed at the other place and I'm sure that even though we spend a lot of time at these places it is possible to work in sponge baths when we aren't there--he once got one around midnight.)
The bedsore seems to be getting smaller--half a centimeter isn't much but its a step in the right direction!
I'm trying to get Jon to eat more and requiring a certain number of bites at a meal--doesn't matter which food and he can certainly eat more than the required number which he occasionally does. Tonight he had a pureed tuna sandwich that even I thought had too much dressing and vinegar, Italian wedding soup, pureed pumpkin with cool whip, and tomato juice. One bite tuna, the rest went to the soup!
He had another informal swallowing test after lunch. He ate most of a small dish of fruit cocktail and had no problems. Will go through another in the morning and maybe a real honest to goodness one with barium and if all goes well will get real food for supper.
I finally decided that we needed a schedule of things to do throughout the day instead of sleeping it away. So the last couple of days we've done exercises for breathing, swallowing, arm wrist and hand range of motion and leg and foot range of motion. Most of these things could be done several times a day and we were lucky to get them done once. I think I can see some improvement and if we keep it up we might start to see some real progress.
It seems that Jon really bugs the staff when we aren't there. He even told one nurse he just wanted to see if they really would come if he put on the call button. They decided he was suffering from anxiety so put him on yet another medication. I said that he had been driving me wild all day and that was why I left early so I could understand the temptation to solve the problem with a pill but there really ought to be a better solution. Tonight after napping a bit he asked me where a box was...I asked what box and he said the box with all his bones! Then said Oh, I must have been dreaming. As we were leaving tonight I asked his nurse to document any other off the wall comments as we have been trying to get medication reduced and he gave me a thumbs up...we'll see.
We're having a trying time getting the waivers set up for help with ramps and modifications to the house, a bed, etc. Seems that I made a goof when Jon was moved from Ft Wayne to Green Springs. Thank heavens for social workers who have knowledge of the system and can do the untangling!
Thanks for checking in.
Now that the weather is nicer we hope to see more visitors. Jon yearns to be closer to home but there aren't that many places in the state with this kind of program.
Now that the weather is nicer we hope to see more visitors. Jon yearns to be closer to home but there aren't that many places in the state with this kind of program.
Sunday, April 5, 2009
Adjusting
Moving always takes some time to adapt to our new surroundings and CRSI is no exception. During the interview they were adamant in their response to two hour turnings....”absolutely we turn every two hours!” We have yet to see that. Being the new kids on the block we’ve tried to be patient and yet insistent. We put the schedule for changing the foot and hand braces on the wall only to have the Director of Nursing tell us they couldn’t be there...privacy rights? I could have understood fire hazard! I asked how the staff would know since so many of them could be pulled from various other responsibilities and he said they read the charts every day. I responded that it was 10:10 and I had just removed the hand and foot braces and they were supposed to be removed at 8. He started taking notes. I said would you be the person to discuss turnings and he replied that he was so I told him of the 3 hour stretches the day before; he took more notes. Then he expressed some amazement about the IV port they were using in Jon’s wrist for his antibiotics. It seems that vancomycin is very hard on regular veins, which may explain why they were having trouble finding a good one a few days before, and that he needed to have a special PICC line in his upper arm. This required a move to the hospital next door yesterday. The PICC line (a peripherally inserted central catheter) is inserted in the upper arm and travels up to the shoulder and down toward the heart through increasingly larger veins until the tip rests in the distal superior vena cava near the heart. This allows the antibiotics to go into a larger body of blood and also get to the heart faster. Score: Director of Nursing, 1 pt. Us: after two days of very irregular turnings, 0..
We also had trouble with the call button. This is not new for Jon. He doesn’t seem to have the strength to hit even the soft round buttons hard enough and the only kind we’ve found that works is triangular shaped. After much tinkering they checked and by golly they have one of those!
By luck the VAC machine they use is stronger than the one at the other hospital. (The wound nurse there was not happy with the progress of the bedsore as it was getting larger and not forming as much granulation as it should.) However, the first one they used started beeping and they had trouble getting it to work properly so they needed a new one. I’m happy to say it arrived that same morning...so did another one about 7 that night!
I am pleased with the physical therapy team but then I just saw them briefly two days. Because of the trip for the PICC he missed therapy altogether Friday. He did, however, get a real bath. The first since he had been at Dodd Hall. They lay him on a plastic table which has a pattern of large silver dollar size holes and can use a sprayer to rinse him off. He got a good shampoo also. I’d like to see more of those since he has developed seborrhea in his hair, eyebrows, mustache and along the sides of his nose. Baths are supposed to be a regularly scheduled “activity.”
Barb,Bill and I have been “tag-teaming” at the hospital and keeping a log of turnings, instructions, and general events to keep each other informed. That has been a great help. There has been so much to remember though. The new bed doesn’t have degrees marked on it and he shouldn’t be below 30 degrees.. We try to guess but I think Jon has “the feel” of 30 degrees ingrained because he always let us know in the past when we had dipped below the 30 degree mark. Can’t be above a certain angle without his turtle shell brace...you get the picture.
Thanks for checking in. Was looking forward to an early bedtime in my own home and it’s late already.
Hope your holiday preparations are going well.
Marj
We also had trouble with the call button. This is not new for Jon. He doesn’t seem to have the strength to hit even the soft round buttons hard enough and the only kind we’ve found that works is triangular shaped. After much tinkering they checked and by golly they have one of those!
By luck the VAC machine they use is stronger than the one at the other hospital. (The wound nurse there was not happy with the progress of the bedsore as it was getting larger and not forming as much granulation as it should.) However, the first one they used started beeping and they had trouble getting it to work properly so they needed a new one. I’m happy to say it arrived that same morning...so did another one about 7 that night!
I am pleased with the physical therapy team but then I just saw them briefly two days. Because of the trip for the PICC he missed therapy altogether Friday. He did, however, get a real bath. The first since he had been at Dodd Hall. They lay him on a plastic table which has a pattern of large silver dollar size holes and can use a sprayer to rinse him off. He got a good shampoo also. I’d like to see more of those since he has developed seborrhea in his hair, eyebrows, mustache and along the sides of his nose. Baths are supposed to be a regularly scheduled “activity.”
Barb,Bill and I have been “tag-teaming” at the hospital and keeping a log of turnings, instructions, and general events to keep each other informed. That has been a great help. There has been so much to remember though. The new bed doesn’t have degrees marked on it and he shouldn’t be below 30 degrees.. We try to guess but I think Jon has “the feel” of 30 degrees ingrained because he always let us know in the past when we had dipped below the 30 degree mark. Can’t be above a certain angle without his turtle shell brace...you get the picture.
Thanks for checking in. Was looking forward to an early bedtime in my own home and it’s late already.
Hope your holiday preparations are going well.
Marj
Wednesday, April 1, 2009
Packed Up and Moved Again!
Select Hospital told us last week they had gotten Jon off the respirator and that was their goal and so he needed to go to another facility...we thought the bedsore was another major issue but it seems that hospitals now have a "subacute" designation that evidently is one step above a nursing home and 2 steps below a regular hospital. (let me count the ways..regular hospital, long term acute care, long term subacute care and nursing home...)
Anyway, this place is very similar to Green Springs in that their major emphasis is on rehabilitation. He has a room mate again but like the last room mate he seems like a 60+ little guy. The last one was a Jordanian who ran a convenience store and was shot when the store was robbed. He had a bullet lodged somewhere in his back and they weren't sure they could remove it without causing other problems but we were glad to hear it was done successfully.
Oh yes? the name....Columbus Rehabilitation and Subacute Institute. Just send mail to sister Barb but if driving, and please do, come down Rt 315 to Broad and it's right across the street from the exit ramp. Can't get any easier than that. Moving days are extremely stressful for me. Several times now I have had to do most of the packing up and hauling it to the car. And then the ambulance never comes on time and the wait seems interminable.
I'm exhausted and off to bed. Please pray for more tolerance of pain on Jon's part and a renewed sense of wanting to "get the show on the road" to the best recovery possible. Thanks for checking in and again, my apologies for not attending to the blog.
PS For those of you keeping track of the bedsore it is now 6mm x 5mm x 2mm and although the wound guy said he saw new tissue growth he wasn't pleased with the progress either so maybe this new place will have a more powerful VAC or different methods to try.
Anyway, this place is very similar to Green Springs in that their major emphasis is on rehabilitation. He has a room mate again but like the last room mate he seems like a 60+ little guy. The last one was a Jordanian who ran a convenience store and was shot when the store was robbed. He had a bullet lodged somewhere in his back and they weren't sure they could remove it without causing other problems but we were glad to hear it was done successfully.
Oh yes? the name....Columbus Rehabilitation and Subacute Institute. Just send mail to sister Barb but if driving, and please do, come down Rt 315 to Broad and it's right across the street from the exit ramp. Can't get any easier than that. Moving days are extremely stressful for me. Several times now I have had to do most of the packing up and hauling it to the car. And then the ambulance never comes on time and the wait seems interminable.
I'm exhausted and off to bed. Please pray for more tolerance of pain on Jon's part and a renewed sense of wanting to "get the show on the road" to the best recovery possible. Thanks for checking in and again, my apologies for not attending to the blog.
PS For those of you keeping track of the bedsore it is now 6mm x 5mm x 2mm and although the wound guy said he saw new tissue growth he wasn't pleased with the progress either so maybe this new place will have a more powerful VAC or different methods to try.
Tuesday, March 24, 2009
A Day in the Sun
Sunday and Monday were pretty uneventful. Jon slept alot. Today they put Jon into a bed that folds into a chair and I was able to take him out of the room. We even went outside! The first time he has been outside, other than to be transported somewhere, since the accident. We (Jon and Barb)were only out for 15 minutes but the sun was shining and felt warm. Jon's response was "It could have been warmer and less wind". I was hoping for something alittle more excited than that but at least it got him outside the room and the building. Something alittle freeing about going out and sitting in the sun. He sat there and just soaked in the sun with his eyes closed. We'll see if it helps his spirits any. I hope so.
I left for work at 1:00 pm and Mom and Carol got there around 1:30-2:00ish. I don't know how his day has been with them so far. Will write more later.
Please continue to pray for Jon's healing, attitude/outlook and the family's health and outlook. I told him he is starting to get a little short with people again. The positive attitude was apparently left at OSU.
Thanks for checking.
I left for work at 1:00 pm and Mom and Carol got there around 1:30-2:00ish. I don't know how his day has been with them so far. Will write more later.
Please continue to pray for Jon's healing, attitude/outlook and the family's health and outlook. I told him he is starting to get a little short with people again. The positive attitude was apparently left at OSU.
Thanks for checking.
Saturday, March 21, 2009
Visitors
A couple of Jon's friends, Art and Gary, came down for a quick day trip on Friday. Brother Greg and Little Jimmy, a friend came down Friday night and spent most of Saturday with Jon. Another friend, Paul, came over from Newark on Saturday afternoon.
Jon is at least trying a bite of everything before saying he doesn't want it. He apparently liked a chicken dish tonight. He had cantaloupe for breakfast and peaches for lunch. He likes his fruit! We can pretty much guarantee that he will at least eat his fruit. I brought him a child size Frosty earlier today but he only ate 2 bites of it.
Jon seems to be holding his own in the breathing department. He has been off the vent but is still receiving oxygen through a tube in his nose. Milk is producing more phlegm and was giving Jon a hard time after eating supper tonight. At least when he was on the vent, when he had sleep apnea, the vent would go off, startle Jon and he would start breathing again. With out the vent, there is no alarm to startle him. So Dad is staying with him tonight just to make sure that his breathing doesn't go too low. The alarm on the oxygen sensor is set to go off when he goes lower than 85.
That's all for now. Thanks for checking in.
Jon is at least trying a bite of everything before saying he doesn't want it. He apparently liked a chicken dish tonight. He had cantaloupe for breakfast and peaches for lunch. He likes his fruit! We can pretty much guarantee that he will at least eat his fruit. I brought him a child size Frosty earlier today but he only ate 2 bites of it.
Jon seems to be holding his own in the breathing department. He has been off the vent but is still receiving oxygen through a tube in his nose. Milk is producing more phlegm and was giving Jon a hard time after eating supper tonight. At least when he was on the vent, when he had sleep apnea, the vent would go off, startle Jon and he would start breathing again. With out the vent, there is no alarm to startle him. So Dad is staying with him tonight just to make sure that his breathing doesn't go too low. The alarm on the oxygen sensor is set to go off when he goes lower than 85.
That's all for now. Thanks for checking in.
Thursday, March 19, 2009
A Big Day
Jon's day started with a date with the speech therapist for breakfast. He had pancakes and syrup, juice and milk...the only hitch? the pancakes and syrup were pureed into a mushed up heap! Still he ate most of it. The respiratory tech came in and put a cap on the trach and removed the ventilator from the room. Jon said "Bon voyage" as it went out the door. If all goes well he could have the trach removed completely but we have decided to take our good old sweet time. He's been almost to this point too many times and then disaster has struck.
I had to dash back to Barb's at 11:30 so I don't know what he had for lunch but he ate a good deal of it I heard. For supper it was chicken and dumplings, brussel sprouts and a soft sugar cookie--all pureed of course. Doesn't like brussel sprouts in any shape or form. Pureed sugar cookies taste almost like cookie dough but he ate several bites of it and all of the chicken.
Tonight the tech gave him a good soapy bath and a shave, we left him in the good hands of the tech and he's all ready for company tomorrow. Several friends from Defiance are supposed to come. Greg is coming on Saturday and mom is heading back home for the weekend.
I had to dash back to Barb's at 11:30 so I don't know what he had for lunch but he ate a good deal of it I heard. For supper it was chicken and dumplings, brussel sprouts and a soft sugar cookie--all pureed of course. Doesn't like brussel sprouts in any shape or form. Pureed sugar cookies taste almost like cookie dough but he ate several bites of it and all of the chicken.
Tonight the tech gave him a good soapy bath and a shave, we left him in the good hands of the tech and he's all ready for company tomorrow. Several friends from Defiance are supposed to come. Greg is coming on Saturday and mom is heading back home for the weekend.
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