First of all - apologies to those of you who either called yesterday or who were waiting for calls - Dan has a "working weekend" going on here and I am having some health issues of my own and neither of us were able to get to Woodbine yesterday.
Dan is working again today so I went this morning by myself, fully intending to call Marlene and Meryl. Unfortunately, Estelle was not responding or talking anyone who was present today so it didn't seem like a good time to be trying to get her to speak on the telephone.
She was sitting in her chair, but looking pretty uncomfortable. She slumps badly to one side and it is almost impossible to keep her sitting straight. The aide said they had just gotten her up and were intending on taking her out of the room in a little bit but felt that they'd give her some time to adjust to just being in the chair itself before moving her out of her comfort zone. She was not responding to them and she did not respond to me, either. I pulled up a chair and sat next to her and tried to get her attention several times. She would open her eyes and (occasionally) look at me and then turn her head and close her eyes again and that was it. I asked her if she would like to call anyone but, as with everything else I asked her, she did not answer.
I spent some time changing the water in her flowers and straightening her closet and her drawers and then I simply sat with her for another 40 minutes or so and then I left. It is a big weekend here in DC and the streets are filled with motorcycles, motorcycles and more motorcycles (and people lining the streets waiting to wave at motorcycles) making road travel quite difficult. I'm not supposed to be driving anyhow, so it seemed the better part of valor to get myself off the streets as soon as possible.
I did notice 2 shirts in her drawer which I do not recognize. Normally I would simply return them to the nursing staff but I think Viv told Dan that she was sending some clothing to Mom but I do not know if these shirts were from her or if they are in Mom's drawer by mistake. (They seem to have problems keeping clothing straight sometimes.) These blouses did not have names in them and I do not want to tag them as Mom's if they are not her's. If Viv could please contact Dan or myself and let us know, it would be appreciated - and if will also help to make sure they will be returned to Estelle after they are laundered.
Anyhow, everyone have a wonderful holiday weekend, or what's left of it, anyhow. Dan will visit Mom tomorrow if he does not have to work again and hopefully she will respond much better to him.
Sunday, May 29, 2011
Thursday, May 26, 2011
Thursday, May 26, 2011
Spent over an hour with the director of respiratory therapy at Woodbine today. Wonderful man - he is in charge of the ventilator/trach unit there and oversees all of the respiratory patients on the other floors.
Dan and I have been concerned for awhile over the fact that Estelle has had ever increasing amount of phlegm and secretions in her mouth which she cannot get rid of on her own. We worry constantly that she will cough and choke someday or that, because her swallow reflex is so poor, she will aspirate and get another pneumonia. Bob (the respiratory director) has also been concerned about the same thing, hence the long conference.
He discussed various means of preventing either such occurance - some of the simple enough to do and some of them a bit more difficult and painful. The best thing to do would be to suction her regularily - but suction is painful sometimes and uncomfortable all of the time. Mom would not be a good candidate for routine suction because she bites down on anything which comes near her mouth and does not want to let go. However, because I have been present a few times when she had eiher choked or I've needed to manually remove large amounts of think phlegm from her mouth, he is going to have a suction machine put into the room so that, in case of emergency, it is readily available.
For now, they are going to clean her mouth more often then normal (usually 2 - 3 times daily.) Now they will do it at least 4 times daily and any other time they notice she is retaining oral secretions. It is pretty hard to do, however, because, as I said earlier, she either refuses to open her mouth at all or she bites down on whatever is being used to swab her. There is always a danger of broken teeth when someone does this. No matter how gently the person doing the cleaning or suctioning is being, teeth sometimes get broken. I've had it happen myself - it's just one of the side effects which is sometimes unavoidable.
He is also going to put her on a different "turning" schedule. Currently the standard order on her floor is for bedridden patients to be turned every 4 hours....on the vent unit they do it once every 2 hours because of the increased susceptiblity to pneumonia. Eselle is not on a ventilator, obviously, but because she does not move or shift position on her own or lift her head or clear her throat by herself she is also at major risk of pneumonia and he (and we) feel that she is definitly a good candidate for being put on the more frequent schedule in the attempt to head off any unfortunate side-effect of being virtually totally immobile.
Bob is also going to try to get an order from the doctor to have speech therapy evaluate her every couple weeks on a regular schedule because it will give him a better idea of just how capable she is of swallowing - thus he can better evaluate and update her risk of aspiration and we can better evaluate if she is improving enough to actually undergo the barium swallow test again in the hopes that she may someday be able to drink a cup of tea or eat something solid again.
All in all, it was a very fruitful discussion - and he was nice enough to give me his personal phone number and tell me that if we had any problems or questions with anything, even matters other than respiratory ones, that we could call him and he would try to get us the help or information that we needed.
I also discussed her feeding tube with her physician today - and he seems quite pleased with the condition of the current one. That, too, is good news. The skin seems to be continuing to heal and the leakage is managable with gauze 4x4s.
I continue to be impressed with the caring and profesionalism of certain members of the staff here. It is heartening to find people in this day and age who are willing to go that extra mile.
We may not be able to make Estelle better - but we are trying everything we can to make sure she does not worsen.
I know it does not sound like enough - it does not feel like enough - but for right now, it seems to be all we can humanly do.
Dan and I have been concerned for awhile over the fact that Estelle has had ever increasing amount of phlegm and secretions in her mouth which she cannot get rid of on her own. We worry constantly that she will cough and choke someday or that, because her swallow reflex is so poor, she will aspirate and get another pneumonia. Bob (the respiratory director) has also been concerned about the same thing, hence the long conference.
He discussed various means of preventing either such occurance - some of the simple enough to do and some of them a bit more difficult and painful. The best thing to do would be to suction her regularily - but suction is painful sometimes and uncomfortable all of the time. Mom would not be a good candidate for routine suction because she bites down on anything which comes near her mouth and does not want to let go. However, because I have been present a few times when she had eiher choked or I've needed to manually remove large amounts of think phlegm from her mouth, he is going to have a suction machine put into the room so that, in case of emergency, it is readily available.
For now, they are going to clean her mouth more often then normal (usually 2 - 3 times daily.) Now they will do it at least 4 times daily and any other time they notice she is retaining oral secretions. It is pretty hard to do, however, because, as I said earlier, she either refuses to open her mouth at all or she bites down on whatever is being used to swab her. There is always a danger of broken teeth when someone does this. No matter how gently the person doing the cleaning or suctioning is being, teeth sometimes get broken. I've had it happen myself - it's just one of the side effects which is sometimes unavoidable.
He is also going to put her on a different "turning" schedule. Currently the standard order on her floor is for bedridden patients to be turned every 4 hours....on the vent unit they do it once every 2 hours because of the increased susceptiblity to pneumonia. Eselle is not on a ventilator, obviously, but because she does not move or shift position on her own or lift her head or clear her throat by herself she is also at major risk of pneumonia and he (and we) feel that she is definitly a good candidate for being put on the more frequent schedule in the attempt to head off any unfortunate side-effect of being virtually totally immobile.
Bob is also going to try to get an order from the doctor to have speech therapy evaluate her every couple weeks on a regular schedule because it will give him a better idea of just how capable she is of swallowing - thus he can better evaluate and update her risk of aspiration and we can better evaluate if she is improving enough to actually undergo the barium swallow test again in the hopes that she may someday be able to drink a cup of tea or eat something solid again.
All in all, it was a very fruitful discussion - and he was nice enough to give me his personal phone number and tell me that if we had any problems or questions with anything, even matters other than respiratory ones, that we could call him and he would try to get us the help or information that we needed.
I also discussed her feeding tube with her physician today - and he seems quite pleased with the condition of the current one. That, too, is good news. The skin seems to be continuing to heal and the leakage is managable with gauze 4x4s.
I continue to be impressed with the caring and profesionalism of certain members of the staff here. It is heartening to find people in this day and age who are willing to go that extra mile.
We may not be able to make Estelle better - but we are trying everything we can to make sure she does not worsen.
I know it does not sound like enough - it does not feel like enough - but for right now, it seems to be all we can humanly do.
Tuesday, May 24, 2011
Tuesday, May 24, 2011
Today's flowers:
Not much to say today. When I arrived at Woodbine Estelle was getting her morning vitals taken and receiving her AM medications. She was not responding to the nurses or the aides and I thought she was asleep but when they were finished and gone she had her eyes wide open and was staring up at the ceiling. I attempted to get her to talk to me several times but the most I could get was to have her turn her head in my direction and stare at me. She would not respond at all.
I told her about the weather, I told her that Dan was working hard at a special project and was working much overtime and that Marlene and Muriel and Merryl had all called over the weekend to wish her well but I am unsure if she heard or understood me. I will tell her again next time I see her.
After about 20 minutes of simply staring off into space she closed her eyes and seemed to fall into a sound sleep. I stayed another half hour or so but she did not wake up or open her eyes again and I decided that I'd try to make it home before the storms came.
Some days are good and some are not so good. This was a not so good day, I think.
Hopefully the next visit will be better.
I did ask the nurse about her feeding tube and she told me that this one was working much better - very little leakage and the skin around the insertion site continues to improve. I snuck a peek for myself when she left the room and it all looked well to me, too.
Hope everyone is well and enjoying the warmer weather and surviving the storms if they are happening in your area, too.
Not much to say today. When I arrived at Woodbine Estelle was getting her morning vitals taken and receiving her AM medications. She was not responding to the nurses or the aides and I thought she was asleep but when they were finished and gone she had her eyes wide open and was staring up at the ceiling. I attempted to get her to talk to me several times but the most I could get was to have her turn her head in my direction and stare at me. She would not respond at all.
I told her about the weather, I told her that Dan was working hard at a special project and was working much overtime and that Marlene and Muriel and Merryl had all called over the weekend to wish her well but I am unsure if she heard or understood me. I will tell her again next time I see her.
After about 20 minutes of simply staring off into space she closed her eyes and seemed to fall into a sound sleep. I stayed another half hour or so but she did not wake up or open her eyes again and I decided that I'd try to make it home before the storms came.
Some days are good and some are not so good. This was a not so good day, I think.
Hopefully the next visit will be better.
I did ask the nurse about her feeding tube and she told me that this one was working much better - very little leakage and the skin around the insertion site continues to improve. I snuck a peek for myself when she left the room and it all looked well to me, too.
Hope everyone is well and enjoying the warmer weather and surviving the storms if they are happening in your area, too.
Sunday, May 22, 2011
Sat.-Sun., 5/21-22
Another brief update.
We visited yesterday, and stuck around a little more than an hour. Unfortunately, our conversation was fairly non-eventful. We brought her some more fresh flowers, which she pronounced "beautiful," and talked to her a lot. Mom talked to us a little. I did ask if she remembered she went to the hospital earlier in the week, because of some trouble with her feeding tube. She answered that very clearly with "Yes, it came out." So we know that memories can stay around for days (long-term memories, of course, are there for her in general.)
Today, Sunday, I stayed longer, but more than anything, I watched her sleep. She was in bed when I came by, still asleep, and didn't wake up to loud hellos. I asked the nurse if we could go down to the patio a little later, when she woke up -- that would be fine, the nurse said. She asked whether I wanted to do that now, or after her feeding. I told her "after lunch" would be fine.
When they gave her her meds through the tube, there was some shifting around, so she woke up a bit. I called "Good morning, Mom," from a little distance from her bed. She called back "Good morning, sweetheart." But when the aids were gone, I could not understand much else she was saying today, and she fairly quickly just nodded back off. She'd rouse herself when I called to her (now from right next to the bed,) but conversation was just very difficult. So I asked her if she'd like me to play the guitar, and she was fine with that. I played for a long time, and she listened, and eventually drifted back off to sleep.
I did not ask the nurses to rouse her again to hoist her in the chair and take her downstairs. I slipped out after our Sunday afternoon concert. It seems these days I only know lullabyes.
We visited yesterday, and stuck around a little more than an hour. Unfortunately, our conversation was fairly non-eventful. We brought her some more fresh flowers, which she pronounced "beautiful," and talked to her a lot. Mom talked to us a little. I did ask if she remembered she went to the hospital earlier in the week, because of some trouble with her feeding tube. She answered that very clearly with "Yes, it came out." So we know that memories can stay around for days (long-term memories, of course, are there for her in general.)
Today, Sunday, I stayed longer, but more than anything, I watched her sleep. She was in bed when I came by, still asleep, and didn't wake up to loud hellos. I asked the nurse if we could go down to the patio a little later, when she woke up -- that would be fine, the nurse said. She asked whether I wanted to do that now, or after her feeding. I told her "after lunch" would be fine.
When they gave her her meds through the tube, there was some shifting around, so she woke up a bit. I called "Good morning, Mom," from a little distance from her bed. She called back "Good morning, sweetheart." But when the aids were gone, I could not understand much else she was saying today, and she fairly quickly just nodded back off. She'd rouse herself when I called to her (now from right next to the bed,) but conversation was just very difficult. So I asked her if she'd like me to play the guitar, and she was fine with that. I played for a long time, and she listened, and eventually drifted back off to sleep.
I did not ask the nurses to rouse her again to hoist her in the chair and take her downstairs. I slipped out after our Sunday afternoon concert. It seems these days I only know lullabyes.
Thursday, May 19, 2011
Wednesday, May 19, 2011
8:40AM
Just a quick update.
Estelle's feeding tube fell out last night. They were unable to replace it at Woodbine and so they are keeping the site open and we are waiting for the specialists at the hospital to call back with a scheduled time for new tube placement. Hopefully it will be sometime today and the new insertion will go smoothly.
Other than that, she is doing well. I'm sure this will be a set-back as she does not like the ambulance trips there and back nor does she care much for the ordeal of being picked up, put down, poked, prodded and otherwise put through painful procedures.
I certainly don't blame her.
I'll update as things progress.
3:45PM
Back from the hospital. Everything went well. The tube was replaced and anchored as firmly as possible without too much trouble. Estelle handled it well. She was awake and alert most of the time and was very patient and appreciative of the hospital staff's efforts. Her blood pressure was extremely high but we're hoping it's because she was unable to take her tube medications for hypertension and once they get started again it will come back down. They were getting ready to give her the meds when I left about 40 minutes ago.
They replaced the tube with one a size larger. The doctor and I talked about eventually replacing the current arrangement with a much smaller one called a "button," which is much harder to pull out and seems to cause far fewer problems in the people who have long term feeding tubes. We talked about putting one in today, in fact, but because Estelle's skin is still somewhat raw and irritated from leakage he felt it would be a bad idea. This "button" arrangement sits right on the skin and with the area being still quite raw it could cause infection. He felt it would be better to let the skin heal a bit more before trying it.
If this larger size tube works without leaking, we'll leave it the way it is...however, if it continues to leak or if it falls out again we shall think seriously of changing it to the newer one. The only drawback is that many nursing homes are unfamiliar with their care and usage and the staff at Woodbine might not be familiar with them. Not insurmountable, they can learn, but still something to consider. It's not always good to be the patient that they're "learning" on.
By the time we got back to the nursing home Estelle was pretty much exhausted. She told the nurses at Woodbine that she was "terrible," and complained of generalized pain all over. They got her undressed and changed and tucked her comfortably in bed and were going to give her some extra pain medication along with her normal daily meds. She looked very tired so I told her I had to go but that I would be back in the morning and she said that would be "lovely."
Hopefully the morrow will find her feeling better. She's been quite alert recently and we'd really love for her to stay that way.
Just a quick update.
Estelle's feeding tube fell out last night. They were unable to replace it at Woodbine and so they are keeping the site open and we are waiting for the specialists at the hospital to call back with a scheduled time for new tube placement. Hopefully it will be sometime today and the new insertion will go smoothly.
Other than that, she is doing well. I'm sure this will be a set-back as she does not like the ambulance trips there and back nor does she care much for the ordeal of being picked up, put down, poked, prodded and otherwise put through painful procedures.
I certainly don't blame her.
I'll update as things progress.
3:45PM
Back from the hospital. Everything went well. The tube was replaced and anchored as firmly as possible without too much trouble. Estelle handled it well. She was awake and alert most of the time and was very patient and appreciative of the hospital staff's efforts. Her blood pressure was extremely high but we're hoping it's because she was unable to take her tube medications for hypertension and once they get started again it will come back down. They were getting ready to give her the meds when I left about 40 minutes ago.
They replaced the tube with one a size larger. The doctor and I talked about eventually replacing the current arrangement with a much smaller one called a "button," which is much harder to pull out and seems to cause far fewer problems in the people who have long term feeding tubes. We talked about putting one in today, in fact, but because Estelle's skin is still somewhat raw and irritated from leakage he felt it would be a bad idea. This "button" arrangement sits right on the skin and with the area being still quite raw it could cause infection. He felt it would be better to let the skin heal a bit more before trying it.
If this larger size tube works without leaking, we'll leave it the way it is...however, if it continues to leak or if it falls out again we shall think seriously of changing it to the newer one. The only drawback is that many nursing homes are unfamiliar with their care and usage and the staff at Woodbine might not be familiar with them. Not insurmountable, they can learn, but still something to consider. It's not always good to be the patient that they're "learning" on.
By the time we got back to the nursing home Estelle was pretty much exhausted. She told the nurses at Woodbine that she was "terrible," and complained of generalized pain all over. They got her undressed and changed and tucked her comfortably in bed and were going to give her some extra pain medication along with her normal daily meds. She looked very tired so I told her I had to go but that I would be back in the morning and she said that would be "lovely."
Hopefully the morrow will find her feeling better. She's been quite alert recently and we'd really love for her to stay that way.
Monday, May 16, 2011
Sat.-Sun. May 14-15, 2011
Dan again, with this weekend's Estelle news.
Saturday, for us, was a short visit. Mom was sitting in the "gerry chair" in the hall when we came in. (The "gerry chair" is a reclining wheelchair, like the front seats of cars.) Laura said "Hello Estelle, how are you?" and she replied "terrible." We asked why, and the answer was difficult to understand. Laura asked if she wanted to go back to bed, and she said yes.
So, we got an aid's attention, and they got her back into bed. This is a difficult process. It consists of putting a harness under her, elevating her with a powered winch, very carefully pivoting her over to the bed, and carefully lowering her. And of course, before putting her in the sling to transfer her, there is some cleanup to be considered.
As you can imagine, it took some minutes behind a closed door before we were let in again to see Mom appear, mater ex machina, as it were, in her bed.
At this point we began the "hellos" again, but got no answer. After another twenty minutes of this process, we announced we were leaving and would return Sunday. It was disappointing to us and likely to her, but some days are like that now with Mom.
Sunday, I got over to Woodbine around 11:30 a.m., and we had a nice (and more extended) visit. I asked Mom if she'd like to go outside, and she nodded. So I got hold of an aid, and let her know where we were off to. The aid brought Mom down, and passed word to another one, who was to bring her feeding down after us. So down we went in the elevator, the aid wheeling the gerry chair, me carrying my guitar, which I'd brought because Mom had liked it back in New Jersey, and because it helps when things are quiet between us.
When we arrived outside, we had the whole patio area to choose from. We set up under the shade of a tree. With the beautiful weather, it felt like a nice little sidewalk cafe in an off hour.
The weather here was beautiful: about 70 degrees and a little cloudy, but with plenty of sunlight and a light breeze. I said to her "not quite the Champs Elysee, but it'll do." (Mom had spoken a few times of her time when she was young and working in France, and I decided via projection that she must have at one time or another spent an afternoon or two in such a spot.) This earned me an unexpected "Ha."
Vivien had called as I drove over, so once we were situated, we called Vivien, and they were able to talk a little. Unfortunately, the second aid had arrived with the feeding as Viv and Mom talked, so we had to work the phone call around the fuss of connecting the tube. But that worked out fine.
Then Mom and I talked a little bit, and I played a few songs fairly badly, but she's always had a generous ear for my middling musical talents. For the record, I can report that Mom likes the guitar bit of "Alabama Rain," by Jim Croce, at least as mangled by yours truly.
As we talked and I played, some other friends and relatives called, and Mom mainly listened to them, but did not answer very fluidly.
One of our relations passed condolences along about her brother Alan, who's recently passed away (condolences again to our English relations.) We had not passed the news along yet, and it certainly got Mom's attention - she asked "What was that about Alan?" a couple of times, so I explained to her. "My brother slipped away," she said. I said yes, her brother had passed away. I held my hand on her arm, and she slightly nodded. She asked if we had to go over. I said it was probably a bad idea, given her condition. She nodded again, and seemed to accept that. We were quiet for a little while, even for our standards. So, I asked if I should play more, and she said yes.
Marlene called a bit later. When Marlene calls from England, she usually wants to talk afterwards too. After she had talked to Mom, I told Mom I'd be back in a moment, and walked around a corner and out of earshot to discuss her condition, which is essentially unchanged.
When I came back, Mom asked where I'd gone. I said I wanted to talk to Marlene a little bit, and Mom asked "about what?" I told her to catch up on Marlene's family, and Marlene wanted to know how Mom was doing. Mom asked what I told her. I told her "you know, you have good days and bad days, like everybody." She said "yes. Today is good." I was so happy to hear that -- especially given the news -- that I confirmed, asking "Today is a good day?" She said "very good."
Our little sidewalk cafe filled up while all this was going on. There was sunlight around us, and people talking and visiting, and a nice breeze, and even birds singing. I can see how for Mom that's a very good day.
Eventually I took the guitar back inside, returned for Mom, and wrestled the Gerry chair back upstairs (with the help of another resident's family, a polite young man who held a door open as I manuevered the chair and the feeding stand through.) When we got upstairs I got her nurse to check the tube site, to make certain I hadn't somehow screwed that up by being all self-reliant about moving her back in. The nurse reports that it looked fine. Because of where I was standing and where she was standing I did not get a look at the site for myself. So long as it stayed connected, as far as the dangers of transportation go, that was fine for now. Laura (who knows much better than I what she's looking at,) will continue to monitor the site itself.
All in all, a good visit.
Saturday, for us, was a short visit. Mom was sitting in the "gerry chair" in the hall when we came in. (The "gerry chair" is a reclining wheelchair, like the front seats of cars.) Laura said "Hello Estelle, how are you?" and she replied "terrible." We asked why, and the answer was difficult to understand. Laura asked if she wanted to go back to bed, and she said yes.
So, we got an aid's attention, and they got her back into bed. This is a difficult process. It consists of putting a harness under her, elevating her with a powered winch, very carefully pivoting her over to the bed, and carefully lowering her. And of course, before putting her in the sling to transfer her, there is some cleanup to be considered.
As you can imagine, it took some minutes behind a closed door before we were let in again to see Mom appear, mater ex machina, as it were, in her bed.
At this point we began the "hellos" again, but got no answer. After another twenty minutes of this process, we announced we were leaving and would return Sunday. It was disappointing to us and likely to her, but some days are like that now with Mom.
Sunday, I got over to Woodbine around 11:30 a.m., and we had a nice (and more extended) visit. I asked Mom if she'd like to go outside, and she nodded. So I got hold of an aid, and let her know where we were off to. The aid brought Mom down, and passed word to another one, who was to bring her feeding down after us. So down we went in the elevator, the aid wheeling the gerry chair, me carrying my guitar, which I'd brought because Mom had liked it back in New Jersey, and because it helps when things are quiet between us.
When we arrived outside, we had the whole patio area to choose from. We set up under the shade of a tree. With the beautiful weather, it felt like a nice little sidewalk cafe in an off hour.
The weather here was beautiful: about 70 degrees and a little cloudy, but with plenty of sunlight and a light breeze. I said to her "not quite the Champs Elysee, but it'll do." (Mom had spoken a few times of her time when she was young and working in France, and I decided via projection that she must have at one time or another spent an afternoon or two in such a spot.) This earned me an unexpected "Ha."
Vivien had called as I drove over, so once we were situated, we called Vivien, and they were able to talk a little. Unfortunately, the second aid had arrived with the feeding as Viv and Mom talked, so we had to work the phone call around the fuss of connecting the tube. But that worked out fine.
Then Mom and I talked a little bit, and I played a few songs fairly badly, but she's always had a generous ear for my middling musical talents. For the record, I can report that Mom likes the guitar bit of "Alabama Rain," by Jim Croce, at least as mangled by yours truly.
As we talked and I played, some other friends and relatives called, and Mom mainly listened to them, but did not answer very fluidly.
One of our relations passed condolences along about her brother Alan, who's recently passed away (condolences again to our English relations.) We had not passed the news along yet, and it certainly got Mom's attention - she asked "What was that about Alan?" a couple of times, so I explained to her. "My brother slipped away," she said. I said yes, her brother had passed away. I held my hand on her arm, and she slightly nodded. She asked if we had to go over. I said it was probably a bad idea, given her condition. She nodded again, and seemed to accept that. We were quiet for a little while, even for our standards. So, I asked if I should play more, and she said yes.
Marlene called a bit later. When Marlene calls from England, she usually wants to talk afterwards too. After she had talked to Mom, I told Mom I'd be back in a moment, and walked around a corner and out of earshot to discuss her condition, which is essentially unchanged.
When I came back, Mom asked where I'd gone. I said I wanted to talk to Marlene a little bit, and Mom asked "about what?" I told her to catch up on Marlene's family, and Marlene wanted to know how Mom was doing. Mom asked what I told her. I told her "you know, you have good days and bad days, like everybody." She said "yes. Today is good." I was so happy to hear that -- especially given the news -- that I confirmed, asking "Today is a good day?" She said "very good."
Our little sidewalk cafe filled up while all this was going on. There was sunlight around us, and people talking and visiting, and a nice breeze, and even birds singing. I can see how for Mom that's a very good day.
Eventually I took the guitar back inside, returned for Mom, and wrestled the Gerry chair back upstairs (with the help of another resident's family, a polite young man who held a door open as I manuevered the chair and the feeding stand through.) When we got upstairs I got her nurse to check the tube site, to make certain I hadn't somehow screwed that up by being all self-reliant about moving her back in. The nurse reports that it looked fine. Because of where I was standing and where she was standing I did not get a look at the site for myself. So long as it stayed connected, as far as the dangers of transportation go, that was fine for now. Laura (who knows much better than I what she's looking at,) will continue to monitor the site itself.
All in all, a good visit.
Friday, May 13, 2011
Friday, May 13, 2011
It's been a long week here so this will be short today.
I spent about 90 minutes with Estelle today. She was asleep when I arrived but woke when her friend, Meryl, called on the phone. She was a bit groggy and was having some trouble talking because her mouth was very dry from just waking up so we hung up, I cleaned her mouth out and then we called Meryl back again. She was not real talkative but she did listen intently and seemed quite pleased to be on the phone.
I spoke to the head nurse and to her social worker, Jasmine, who told me that Estelle had a very good day yesterday - one of the best they'd seen. They are getting her up and in a chair every other day and some days they put her chair in the hallway so she can see what's going on. Apparently VIvian had called Jasmine and she arranged for Mom to call Vivian yesterday from the nursing station and, according to Jasmine, they had a very nice phone call so that was good to hear.
After talking to Meryl,I spent some time talking to Mom, watering her plants, checking her feeding tube and just generally being present but not really doing or saying much of anything for a good deal of the time.
The nursing home was having a cook-out/picnic outside today but it was starting to rain. I thought about taking her outside for the stimulation if the rain quit but I am never sure if it's a good idea to have her sitting around and watching people eat things. I do not know how much she might miss eating, I know she always liked food and dinner situations, so I am always afraid it will be a painful reminder for her. Seems better to avoid the situation, there are plenty of other times to go outside and plenty of other activities which do not involve food which are available.
Anyhow, that was our morning. I hope everyone has a good weekend.
I spent about 90 minutes with Estelle today. She was asleep when I arrived but woke when her friend, Meryl, called on the phone. She was a bit groggy and was having some trouble talking because her mouth was very dry from just waking up so we hung up, I cleaned her mouth out and then we called Meryl back again. She was not real talkative but she did listen intently and seemed quite pleased to be on the phone.
I spoke to the head nurse and to her social worker, Jasmine, who told me that Estelle had a very good day yesterday - one of the best they'd seen. They are getting her up and in a chair every other day and some days they put her chair in the hallway so she can see what's going on. Apparently VIvian had called Jasmine and she arranged for Mom to call Vivian yesterday from the nursing station and, according to Jasmine, they had a very nice phone call so that was good to hear.
After talking to Meryl,I spent some time talking to Mom, watering her plants, checking her feeding tube and just generally being present but not really doing or saying much of anything for a good deal of the time.
The nursing home was having a cook-out/picnic outside today but it was starting to rain. I thought about taking her outside for the stimulation if the rain quit but I am never sure if it's a good idea to have her sitting around and watching people eat things. I do not know how much she might miss eating, I know she always liked food and dinner situations, so I am always afraid it will be a painful reminder for her. Seems better to avoid the situation, there are plenty of other times to go outside and plenty of other activities which do not involve food which are available.
Anyhow, that was our morning. I hope everyone has a good weekend.
Wednesday, May 11, 2011
Wednesday, May 11. 2011
Lots of cards waiting for us today!! Mom was awake and enjoyed looking at and being read all of them.
There were also beautiful Mother's Day roses from Mark's family which I'd not seen before and which are still quite lovely
and a package from Meryl with the softest, prettiest, warmest socks I've ever seen.
Mom was awake and in a fairly good mood today. Not real talkative, but comfortable and clear voiced. She is looking forward to seeing Mark and Lea this weekend and kept asking me how many days, how many days? She proclaimed all of her cards as "lovely," and "how nice," and her socks were "wonderful!"
Her feeding site looks considerably better although it is still leaking a tiny bit.
Other than that, there's not much to say. It was a good visit and Estelle looked really good today. There was some color in her face and she was more animated than usual and more interested in her surroundings.
Most times she acts as though she does not know or remember who I am but when I came in today and woke her (the first time I've been there since Saturday) she immediately asked me where I'd been and told me it had been a long time since I'd come to see her.
When I was leaving I told her I'd be back either tomorrow or the day after that and she wanted to know exactly which one it was going to be. I told her I was unsure and she said, "Well, pick one and be here." I asked her if it mattered to her which one I picked and she said, "No," so I told her Friday - that way if I go tomorrow she will be surprised and if I do not go until Friday she will not be disappointed.
I think.
Anyhow, a good visit and I gave her good wishes from everyone who's sent them to her via Dan or I.
She said to tell you all "hello," and that is is very sweet of everyone to ask about her.
There were also beautiful Mother's Day roses from Mark's family which I'd not seen before and which are still quite lovely
and a package from Meryl with the softest, prettiest, warmest socks I've ever seen.
Mom was awake and in a fairly good mood today. Not real talkative, but comfortable and clear voiced. She is looking forward to seeing Mark and Lea this weekend and kept asking me how many days, how many days? She proclaimed all of her cards as "lovely," and "how nice," and her socks were "wonderful!"
Her feeding site looks considerably better although it is still leaking a tiny bit.
Other than that, there's not much to say. It was a good visit and Estelle looked really good today. There was some color in her face and she was more animated than usual and more interested in her surroundings.
Most times she acts as though she does not know or remember who I am but when I came in today and woke her (the first time I've been there since Saturday) she immediately asked me where I'd been and told me it had been a long time since I'd come to see her.
When I was leaving I told her I'd be back either tomorrow or the day after that and she wanted to know exactly which one it was going to be. I told her I was unsure and she said, "Well, pick one and be here." I asked her if it mattered to her which one I picked and she said, "No," so I told her Friday - that way if I go tomorrow she will be surprised and if I do not go until Friday she will not be disappointed.
I think.
Anyhow, a good visit and I gave her good wishes from everyone who's sent them to her via Dan or I.
She said to tell you all "hello," and that is is very sweet of everyone to ask about her.
Sunday, May 8, 2011
Sunday, May 8, 2011
Dan again, with the Mother's Day recap. I got to see Mom around 2:30 p.m. today, and she was at first very slow to talk. I think her speech is more garbled now than before, or perhaps more accurately, takes longer to "ungarble." Still, some things are very clear, some less so.
I sat with Mom out in one of the common areas for a good amount of time, her feeding apparatus close by. We talked a little, then called Viv, but unfortunately Mom was not that talkative. It took me a while until she was talking back and forth with me a little, at first a very little, but enough that I could ask whether she wanted to go outside for a bit, and feel secure I'd get an answer. With a "that would be lovely," I got the nurse to disconnect the feeding apparatus, and off we went to the downstairs patio.
She did seem to like the fresh air, though we still didn't have that much to say to each other. Mark called, and she still said very little. But when we were on our way back in, she began to offer some confused observations. These come and go, but they're helpful (I think.) They help her get her bearings in a way... today she said "You're not my son, you're my grandson." Well, I thanked her for her opinion of my apparently youthful disposition, but corrected her and told her "I'm your son, Danny." Etc. She looked at me intensely at this point. Then she said, "Yes, you're Dan, I know who you are," as if to say "don't be a dolt, of course you are." But she followed up with "do you have a father here?" I explained my father was her husband, who'd passed away some years ago.
On our way back in, one of the other resident's family members helped me with some of the doors, and she asked "Who was that?" I told her, family of one of the other residents. Then a stranger said "Happy Mother's Day." She looked a little threatened by that, and when we got back to the room, she asked who that was. I told her it was just a random family member, being social. She seemed to accept that.
Then for the last hour or so I think she was very with it. She looked very sad and I asked her if she was sad (a much more successful strategy, usually, than asking "what's wrong.") She said "yes." Then I went to "what's wrong," and got a reply I didn't understand. I asked if the nursing home made her sad, tried a couple of other things. She said "I'm only sad when you talk to me."
Well that was just a fine comeuppance. So I asked whether she thought I talked down to her (When she's not yet conversing I feel that I over-do the non-threatening gentle tone, and when she's "with it" I wonder if she thinks I'm talking to her like a child.) She shook her head. I told her I love her, and all her children love her, and she said "I know." She started talking about my father - "my husband" to her of course - and said she thought people had asked her about him. I recounted the conversation we'd had earlier. She said he passed away over 30 years ago. Pretty spot-on.
Her eyes got wet again, and I asked her if she missed him sometimes. No reply. I said "I know sometimes you fought but everybody does." She said something with the word "hurt" in it. (I'd checked with her a few times if anything physically hurt, so I thought she must mean the other kind.) I asked if she meant her and her husband had each other, and she nodded... I assured her we always hurt people we love, even if we don't really mean it, even if we mean it at the time but don't really mean it. She was still wet-eyed. I asked if she were sad. She said, "no, happy." I said that makes me very happy, and for the moment, that was that.
Somewhere along the way I noticed a beautiful flower arrangement Mark, Leah, and Debbie sent, so I called him back and told him they were beautiful. This gave Mom the chance to thank him as well.
She told me as I was going she had to talk to all of us. I asked if she meant getting us all together, and she said "it doesn't matter." I told her she'd keep having the chance to talk to all of us, and reminded her that Mark and Leah were coming down next Saturday.
I have only my subjective idea of this visit to describe, and perhaps wrongly, I think I know some things from it. One, that Mom's still emotionally active in there. Two, that she's got more or less connection to the facts of her life at different times, and that on a good day, some patience can be richly rewarded. And three, that there is no way of knowing whether one is writing one's own narrative wholecloth around a scanty framework of actual details.
I do feel fairly sure that she knows she's loved, and I think that this is a good thing.
I sat with Mom out in one of the common areas for a good amount of time, her feeding apparatus close by. We talked a little, then called Viv, but unfortunately Mom was not that talkative. It took me a while until she was talking back and forth with me a little, at first a very little, but enough that I could ask whether she wanted to go outside for a bit, and feel secure I'd get an answer. With a "that would be lovely," I got the nurse to disconnect the feeding apparatus, and off we went to the downstairs patio.
She did seem to like the fresh air, though we still didn't have that much to say to each other. Mark called, and she still said very little. But when we were on our way back in, she began to offer some confused observations. These come and go, but they're helpful (I think.) They help her get her bearings in a way... today she said "You're not my son, you're my grandson." Well, I thanked her for her opinion of my apparently youthful disposition, but corrected her and told her "I'm your son, Danny." Etc. She looked at me intensely at this point. Then she said, "Yes, you're Dan, I know who you are," as if to say "don't be a dolt, of course you are." But she followed up with "do you have a father here?" I explained my father was her husband, who'd passed away some years ago.
On our way back in, one of the other resident's family members helped me with some of the doors, and she asked "Who was that?" I told her, family of one of the other residents. Then a stranger said "Happy Mother's Day." She looked a little threatened by that, and when we got back to the room, she asked who that was. I told her it was just a random family member, being social. She seemed to accept that.
Then for the last hour or so I think she was very with it. She looked very sad and I asked her if she was sad (a much more successful strategy, usually, than asking "what's wrong.") She said "yes." Then I went to "what's wrong," and got a reply I didn't understand. I asked if the nursing home made her sad, tried a couple of other things. She said "I'm only sad when you talk to me."
Well that was just a fine comeuppance. So I asked whether she thought I talked down to her (When she's not yet conversing I feel that I over-do the non-threatening gentle tone, and when she's "with it" I wonder if she thinks I'm talking to her like a child.) She shook her head. I told her I love her, and all her children love her, and she said "I know." She started talking about my father - "my husband" to her of course - and said she thought people had asked her about him. I recounted the conversation we'd had earlier. She said he passed away over 30 years ago. Pretty spot-on.
Her eyes got wet again, and I asked her if she missed him sometimes. No reply. I said "I know sometimes you fought but everybody does." She said something with the word "hurt" in it. (I'd checked with her a few times if anything physically hurt, so I thought she must mean the other kind.) I asked if she meant her and her husband had each other, and she nodded... I assured her we always hurt people we love, even if we don't really mean it, even if we mean it at the time but don't really mean it. She was still wet-eyed. I asked if she were sad. She said, "no, happy." I said that makes me very happy, and for the moment, that was that.
Somewhere along the way I noticed a beautiful flower arrangement Mark, Leah, and Debbie sent, so I called him back and told him they were beautiful. This gave Mom the chance to thank him as well.
She told me as I was going she had to talk to all of us. I asked if she meant getting us all together, and she said "it doesn't matter." I told her she'd keep having the chance to talk to all of us, and reminded her that Mark and Leah were coming down next Saturday.
I have only my subjective idea of this visit to describe, and perhaps wrongly, I think I know some things from it. One, that Mom's still emotionally active in there. Two, that she's got more or less connection to the facts of her life at different times, and that on a good day, some patience can be richly rewarded. And three, that there is no way of knowing whether one is writing one's own narrative wholecloth around a scanty framework of actual details.
I do feel fairly sure that she knows she's loved, and I think that this is a good thing.
Saturday, May 7, 2011
Saturday, May 7, 2011
Dan here again.
We dropped by in the late morning today, around 11. Laura and I looked at the tube site, and again, we noticed more leakage than we would have liked to see. I think Laura mentioned in her last post that the stomach acid irritates and reddens her skin when there is leakage. There seemed to be a fair amount of leakage, and Laura is going to follow up next week both on that and on the care of the tube site.
Mom's eyes were open and teary, and for long while would not talk. When she did it was very hard to understand her, and I think she was sad today. He affect is so flat that it still feels like a guess. So, I talked to her for a while about Meryl's recent visit, Mark's coming visit, my recent lunch with a friend of ours from Fredericksburg, and so on. She remained hard to understand when she talked, which I told her. She said she didn't undestand (something) - the direct object got garbled. I was a little worried part of the trouble for her might be interpreting the incoming signals as well as finding the words for the outgoing. So I asked, do you understand me? She said yes, but then very clearly added, "I haven't anything to say to anyone."
Well, we spoke a bit longer anyway, and she got a bit clearer here and there, mainly in answers to questions and sentiments like "good" and "wonderful" when we told her various family members are doing well.
We'll see her again tomorrow, and I hope she's in a bit better spirits for Mother's Day.
We dropped by in the late morning today, around 11. Laura and I looked at the tube site, and again, we noticed more leakage than we would have liked to see. I think Laura mentioned in her last post that the stomach acid irritates and reddens her skin when there is leakage. There seemed to be a fair amount of leakage, and Laura is going to follow up next week both on that and on the care of the tube site.
Mom's eyes were open and teary, and for long while would not talk. When she did it was very hard to understand her, and I think she was sad today. He affect is so flat that it still feels like a guess. So, I talked to her for a while about Meryl's recent visit, Mark's coming visit, my recent lunch with a friend of ours from Fredericksburg, and so on. She remained hard to understand when she talked, which I told her. She said she didn't undestand (something) - the direct object got garbled. I was a little worried part of the trouble for her might be interpreting the incoming signals as well as finding the words for the outgoing. So I asked, do you understand me? She said yes, but then very clearly added, "I haven't anything to say to anyone."
Well, we spoke a bit longer anyway, and she got a bit clearer here and there, mainly in answers to questions and sentiments like "good" and "wonderful" when we told her various family members are doing well.
We'll see her again tomorrow, and I hope she's in a bit better spirits for Mother's Day.
Friday, May 6, 2011
Totally Unrelated Subject
Just wanted to brag a bit for something I can take no credit for!!
This is our newest great-niece, Molly Lynn Hanson born at 8:57 this morning in Lansing, Illinois.
This is our newest great-niece, Molly Lynn Hanson born at 8:57 this morning in Lansing, Illinois.
Friday, May 6, 2011
The O'Keefe Finally Gets Hung at the Head of Estelle's Bed and Mini Roses From Meryl
Happy Friday!!
Not much to report today. Estelle was sleeping when I got there around 9:30AM. She'd had her shower and was finishing up with a feeding. I got the nurses to show me the site when they disconnected it and it looked pretty good. Some leakage but apparently they've talked to the doctor about it this morning, described it to him and he says that's acceptable and probably the best we're going to get. Leaving it open to air seems to be helping the healing process tremendously and it looks much less red and raw.
I did not stay long this morning - about an hour or so. It's laundry day here in the Alexandria and I've been suddenly bitten by the Spring Cleaning Bug. (I KNEW I should have gotten that darn vaccine last December!!!) If I wait more than 20 minutes to act on it, the urge will pass and it will be 2012 before I get back around to it. The cats would be happy (they hate upheaval of any sort) but poor Dan will be sadly disappointed so in the interest of marital harmony - spring clean, I will. The cats will just have to shred new papers and destroy a different section of the couch.
Shabbat Shalom and have a happy weekend!!
Thursday, May 5, 2011
Thursday, May 5, 2011
Still having trouble with the feeding tube. While I was visiting Estelle this morning I checked the site to see if it was healing up any and found, to my dismay, that while the surrounding skin looked considerably better the tube itself was still leaking. There was not a feeding going on at the time but there was a goodly amount of drainage being caught in a washcloth. I questioned her nurses about it and they said that the cloth had been left there after her feeding was completed so they could show me how much it was leaking. There wasn't nearly as much as there had been but it's obviously still not leakproof by any means. We left the cloth off and I stayed another hour or so in order to check that it was not also plain old stomach acid leaking back out and the area did seem to stay dry, so that's good. It means it's only leaking the actual feeding and not a constant slow drainage but we'd really like to see it not happening at any time. That may be a pipe-dream, however, since it's hard to avoid any leakage at all. I won't settle for what there still is, however. As far as I am concerned it's still too much. It may take time for the skin to grow back around the tubing so we just have to wait and hope for now - and try to keep the area as clean and dry as possible while the skin grows back around the insertion site.
It's also ruined virtually all of Estelle's clothing, unfortunately. The combination of feeding material and stomach acid does not wash out - and it eventually eats holes in most cloth material. Because she's suffered through so many large leaks most of her tops are unwearable. We've been leaving her in a hospital gown often lately because it is easier to clean her while wearing one and because it makes no sense to put her through the hassle of being moved around enough to take her shirts on and off over her head more than once or twice a day as her clothing needs changing frequently because of the leaking. I'd brought her some of my extra big sleeping t-shirts last week and that's not working out well either so today I went to Marshall's and bought her a few pretty housecoat type gowns made out of terrycloth which zip or button from top to bottom so they don't have to keep pulling shirts over her head and two pretty "lounging" outfits with stretchy pants and large tops with buttons for "company." (I'm a big believer in "company clothing." As long as I'm not leaving the house and no one but my family is going to see me I'm really happiest in ratty clothing which is worn out and comfortable. But if I'm gonna see someone, then I break out the good jeans.) I remember Estelle seemed to follow the same pattern when we would go visit so I'm hoping this is in line with what she would have wanted for herself, too.
Regardless, until this clears up, for safety sake and to avoid further irritation and the possibility of infection, I think the hospital gowns are going to be the best bet. We've also suspended the "getting up in the chair" for a bit, too, until the inflamation and soreness which has spread across her belly is gone. When she's in a sitting position it just totally scrunches the tubing and the insertion site and causes that much more pressure on skin which is barely staying intact. The last thing we want it to do is open up - they've done a great job of avoiding that so far but it's a constant worry. So, for right now, the less pressure on the area, the better.
Other than that, Estelle looks good. Still a bit dry in the mouth and skin but better than a few days ago. She slept throughout most of my stay today but did wake up when I moved the chair back across the room when I was getting ready to leave. She said, "Oh, hello," and something I did not manage to catch and which she would not repeat so I put the chair back at her bedside and stayed another half hour but she did not speak for the rest of my visit. I tried to read her a Mother's Day card which Vivian and her family had sent but I do not know if she heard me or not. We will read it again to her tomorrow in case she did not. In the meantime there is a cork board in her room and we pin all of her cards to the board and she can look at them when she is awake.
I'll stop in again tomorrow morning to check on things. Hopefully, because it's bath day, Estelle will be awake and alert and happy that she's had her beloved shower and we can have a conversation and maybe open the blinds and the window {if it warms up outside) and she can hear the birds singing.
It's also ruined virtually all of Estelle's clothing, unfortunately. The combination of feeding material and stomach acid does not wash out - and it eventually eats holes in most cloth material. Because she's suffered through so many large leaks most of her tops are unwearable. We've been leaving her in a hospital gown often lately because it is easier to clean her while wearing one and because it makes no sense to put her through the hassle of being moved around enough to take her shirts on and off over her head more than once or twice a day as her clothing needs changing frequently because of the leaking. I'd brought her some of my extra big sleeping t-shirts last week and that's not working out well either so today I went to Marshall's and bought her a few pretty housecoat type gowns made out of terrycloth which zip or button from top to bottom so they don't have to keep pulling shirts over her head and two pretty "lounging" outfits with stretchy pants and large tops with buttons for "company." (I'm a big believer in "company clothing." As long as I'm not leaving the house and no one but my family is going to see me I'm really happiest in ratty clothing which is worn out and comfortable. But if I'm gonna see someone, then I break out the good jeans.) I remember Estelle seemed to follow the same pattern when we would go visit so I'm hoping this is in line with what she would have wanted for herself, too.
Regardless, until this clears up, for safety sake and to avoid further irritation and the possibility of infection, I think the hospital gowns are going to be the best bet. We've also suspended the "getting up in the chair" for a bit, too, until the inflamation and soreness which has spread across her belly is gone. When she's in a sitting position it just totally scrunches the tubing and the insertion site and causes that much more pressure on skin which is barely staying intact. The last thing we want it to do is open up - they've done a great job of avoiding that so far but it's a constant worry. So, for right now, the less pressure on the area, the better.
Other than that, Estelle looks good. Still a bit dry in the mouth and skin but better than a few days ago. She slept throughout most of my stay today but did wake up when I moved the chair back across the room when I was getting ready to leave. She said, "Oh, hello," and something I did not manage to catch and which she would not repeat so I put the chair back at her bedside and stayed another half hour but she did not speak for the rest of my visit. I tried to read her a Mother's Day card which Vivian and her family had sent but I do not know if she heard me or not. We will read it again to her tomorrow in case she did not. In the meantime there is a cork board in her room and we pin all of her cards to the board and she can look at them when she is awake.
I'll stop in again tomorrow morning to check on things. Hopefully, because it's bath day, Estelle will be awake and alert and happy that she's had her beloved shower and we can have a conversation and maybe open the blinds and the window {if it warms up outside) and she can hear the birds singing.
Tuesday, May 3, 2011
Tuesday, May 3, 2011
Estelle had some trouble with her feeding tube yesterday and spent the day trying to get an opening at the hospital for replacement. Unfortunately they could not fit her into the schedule so it had to wait until today.
I went to Woodbine this morning and waited for the ambulance to come and then accompanied her to the cardiovascular/GI lab around noon. Once there she was quite agitated. She does not like ambulance trips at all and this one was no exception. The hospital is less than 5 minutes away but it's still an ordeal to get moved from bed to stretcher, stretcher to bed, bed to stretcher, stretcher to bed and I think she knows it.
Once we got signed in (which was an obnoxious ordeal) she was treated promptly and very, very nicely. There was a Physician's Assistant and a fleuroscopy RN with us at all times. They examined her carefully and kindly and found that the small silicone disc which holds the tube flush against the skin was no longer in place, thus causing stomach acid and feeding material to leak back out from underneath of it. The circular disc sits around the tubing and it keeps riding up and away from the skin which allows stomach contents to bubble out of the stoma itself and spill onto the surrounding skin. They put two stitches into it - stitching the tubing to the disc which will prevent the disc from riding up. They also deflated the ballon which is inside of the stomach and re-inflated it with two additional cc's of sterile water in the hopes that it will hold the inner workings in place, as well.
They flushed it several times without any leakage, cleaned the area carefully, medicated the irritated skin and gave me written and verbal care instructions to take back to the nursing home.
Because the tube has been leaking virtually since Day 1 both nursing homes were keeping heavy gauze pads around the entire site in an attempt to collect the drainage and keep it from dripping - the dressing worked wonderful for that, but it also kept the skin underneath the dressing constantly moist and irritated. Now that it's not leaking at all we are hoping that applying an antibiotic salve and leaving it open to the air will heal it quickly.
Estelle does not verbally complain of pain in the area but we've noticed that she does constantly pick in the general vicinity and occasionally becomes agitated and pushs at the tube site quite vigerously. We are assuming it is painful for her and we are praying that this helps heal the area.
She was awake for most of the trip and the procedure. She was talking fairly often but, unfortunately, her speech was totally unintelligible at all times today.
I went back to Woodbine with her and stayed until she fell asleep. I'm sure she was exhausted from all of the moving and from the procedure itself so I hope she sleeps peacefully for the rest of the day and the night. She was quite dry from not having any fluids in over 24 hours and they were starting her feeding when I left. That should help perk her up, too.
Hope all is well with everyone else. We think of all of you often.
I went to Woodbine this morning and waited for the ambulance to come and then accompanied her to the cardiovascular/GI lab around noon. Once there she was quite agitated. She does not like ambulance trips at all and this one was no exception. The hospital is less than 5 minutes away but it's still an ordeal to get moved from bed to stretcher, stretcher to bed, bed to stretcher, stretcher to bed and I think she knows it.
Once we got signed in (which was an obnoxious ordeal) she was treated promptly and very, very nicely. There was a Physician's Assistant and a fleuroscopy RN with us at all times. They examined her carefully and kindly and found that the small silicone disc which holds the tube flush against the skin was no longer in place, thus causing stomach acid and feeding material to leak back out from underneath of it. The circular disc sits around the tubing and it keeps riding up and away from the skin which allows stomach contents to bubble out of the stoma itself and spill onto the surrounding skin. They put two stitches into it - stitching the tubing to the disc which will prevent the disc from riding up. They also deflated the ballon which is inside of the stomach and re-inflated it with two additional cc's of sterile water in the hopes that it will hold the inner workings in place, as well.
They flushed it several times without any leakage, cleaned the area carefully, medicated the irritated skin and gave me written and verbal care instructions to take back to the nursing home.
Because the tube has been leaking virtually since Day 1 both nursing homes were keeping heavy gauze pads around the entire site in an attempt to collect the drainage and keep it from dripping - the dressing worked wonderful for that, but it also kept the skin underneath the dressing constantly moist and irritated. Now that it's not leaking at all we are hoping that applying an antibiotic salve and leaving it open to the air will heal it quickly.
Estelle does not verbally complain of pain in the area but we've noticed that she does constantly pick in the general vicinity and occasionally becomes agitated and pushs at the tube site quite vigerously. We are assuming it is painful for her and we are praying that this helps heal the area.
She was awake for most of the trip and the procedure. She was talking fairly often but, unfortunately, her speech was totally unintelligible at all times today.
I went back to Woodbine with her and stayed until she fell asleep. I'm sure she was exhausted from all of the moving and from the procedure itself so I hope she sleeps peacefully for the rest of the day and the night. She was quite dry from not having any fluids in over 24 hours and they were starting her feeding when I left. That should help perk her up, too.
Hope all is well with everyone else. We think of all of you often.
Sunday, May 1, 2011
Weekend, April 30 - May 1, 2011
By and large, Mom's had a good weekend, and Laura and I breathed a sigh of relief.
We went to visit her early Saturday afternoon, and were surprised that Mom was awake with her eyes open, and with a bit of prompting was talking again. We took that to be a sign that she was getting her strength back after her most recent infection. The weather was warm and sunny, so we took her outside to the patio. There, she did not talk as much, but I think she enjoyed the change of scenery.
Later Saturday, Mom also had a special treat, because her friend Meryl came down to see her as well.
When Meryl came into town, we met her at the Hilton just down the street from us, had a nosh, and went straight to the nursing home. Mom and Meryl caught up a little, and again, Mom was alert and fairly "chatty," to indulge in a relative characterization. I think she enjoyed very much seeing an old friend. Sometimes Mom's silent. Sometimes she tries to speak, with mixed success; sometimes she needs more time than the average person to get the words out. And other times, like the rest of us, she hasn't anything much to say. She actually reported as much when Meryl was trying to get her to talk with her more toward the end of Saturday - "I haven't got anything to say."
We began to talk about getting back to the hotel, as Mom also seemed to be tiring out, and Mom interjected quite plainly, "It isn't time to say goodnight yet." This was music to my ears, personally, and I think much of it had to do with Mom getting a chance to see an old friend. So we decided to hang around, talk some more, not talk some more, and generally just be there for a while longer. Eventually Mom did get tired, and was okay with us leaving for the evening.
On Sunday, we returned with Meryl, and we went with Mom out to a sitting area. Meryl and Mom caught up some more, and when Mom wasn't talking much, Meryl, Laura, and I chatted amongst ourselves. The subject touched on new gizmos and gadgets, like smart phones, and the constant task of keeping up with "what's new."
I talked a little about the pioneering brown tank of a microwave oven that my father had brought home when we were kids. It was a behemoth of an appliance, and when you cooked with it, the radio immediately switched from talk or music to loud static. It had one setting, which would have been "cook" had they thought to name it (as I recall). There was an egg-timer dial you used to deliver timed microwave exposure that the food was to be subjected to. It did not turn food around automatically. The recommended procedure was to half-cook the food, stop the microwave, and turn the food around by hand, before administering the last dose of radiation. In any event, Mom remembered this little feature of our house in Fredericksburg as well, and seemed amused by the memory.
Laura will be back in the morning, and we do hope Mom continues to talk and keep her eyes open during our visits. I think she was beginning to get her strength back, but Meryl's visit was a wonderful "booster shot."
We went to visit her early Saturday afternoon, and were surprised that Mom was awake with her eyes open, and with a bit of prompting was talking again. We took that to be a sign that she was getting her strength back after her most recent infection. The weather was warm and sunny, so we took her outside to the patio. There, she did not talk as much, but I think she enjoyed the change of scenery.
Later Saturday, Mom also had a special treat, because her friend Meryl came down to see her as well.
When Meryl came into town, we met her at the Hilton just down the street from us, had a nosh, and went straight to the nursing home. Mom and Meryl caught up a little, and again, Mom was alert and fairly "chatty," to indulge in a relative characterization. I think she enjoyed very much seeing an old friend. Sometimes Mom's silent. Sometimes she tries to speak, with mixed success; sometimes she needs more time than the average person to get the words out. And other times, like the rest of us, she hasn't anything much to say. She actually reported as much when Meryl was trying to get her to talk with her more toward the end of Saturday - "I haven't got anything to say."
We began to talk about getting back to the hotel, as Mom also seemed to be tiring out, and Mom interjected quite plainly, "It isn't time to say goodnight yet." This was music to my ears, personally, and I think much of it had to do with Mom getting a chance to see an old friend. So we decided to hang around, talk some more, not talk some more, and generally just be there for a while longer. Eventually Mom did get tired, and was okay with us leaving for the evening.
On Sunday, we returned with Meryl, and we went with Mom out to a sitting area. Meryl and Mom caught up some more, and when Mom wasn't talking much, Meryl, Laura, and I chatted amongst ourselves. The subject touched on new gizmos and gadgets, like smart phones, and the constant task of keeping up with "what's new."
I talked a little about the pioneering brown tank of a microwave oven that my father had brought home when we were kids. It was a behemoth of an appliance, and when you cooked with it, the radio immediately switched from talk or music to loud static. It had one setting, which would have been "cook" had they thought to name it (as I recall). There was an egg-timer dial you used to deliver timed microwave exposure that the food was to be subjected to. It did not turn food around automatically. The recommended procedure was to half-cook the food, stop the microwave, and turn the food around by hand, before administering the last dose of radiation. In any event, Mom remembered this little feature of our house in Fredericksburg as well, and seemed amused by the memory.
Laura will be back in the morning, and we do hope Mom continues to talk and keep her eyes open during our visits. I think she was beginning to get her strength back, but Meryl's visit was a wonderful "booster shot."
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