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.
Friday, May 29, 2009
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!)
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