JE Day 2: An Adventure
I wish I had lots of time to draft this entry. However, it's been a long, satisfying, exhausting day. This may be a bit terse. I hope later in the week to give you a bit more of a sense of 'a day in the life of Chester.'
I got up several times during the night to help Chester. It was a bit uncanny how a couple of times I woke up about a minute before I was needed. I guess it's not all that surprising - Chester and I are pretty connected.
We got him out of bed by 7:45, dressed, bathroom and then time for breakfast. There's a great bakery nearby where a friend of Chrys's works (or owns?). The scones are amazing - Chester makes a porridge by dissolving one or two in hot water. I figured, 'when in Rome,' and had the same breakfast myself. Wow are they good! Quite a satisfying breakfast, too.
Doreen, the physical therapist, came by at 9. Yesterday Chester took one lap around the kitchen table and had had enough. This morning he walked outside, up a full flight of stairs, back down, around the common area outside and back in! That's walking for 1/2 hour! Even with a couple of minute-long breaks, the improvement from yesterday is marked, even to someone as unfamiliar with his progress as I. Then they got on the massage table and did stretching and strength exercises. It was a great workout. Doreen is really positive and responsive to Chester. She told him he would be getting his dorsal flexion back in his right leg (which would help him walk even better). He is quite heartened by that.
[I got some really great pictures of Chester walking and doing the stairs, and I'm sorry I don't have time to process them now. I hope to some time this week, and will let you know to come back to THIS post to see them.]
Next came his speech therapist (forgive me, I can't think of her name now). I took a nap during their session (was it 1.5 hrs or 2?) and only heard the first and last parts of it. They talked about animal totems. I'm not sure whether to be amazed with Berkeley and the surrounding area or the people Chester attracts to himself or both.
Next we had lunch, which consisted of a wonderful squash soup from Joe Kramer and Chester devoured the rest of Chrys's salmon. I had some turkey & stuffing. Then apple pie (Chester had 1.5 helpings).
We packed up and went to Alta Bates to see Dr. Champion. Talk about a Dikensian name - she certainly is a champion for him. I took an instant liking to her. She talked about the MRI results (nothing new from what was posted previously). She was concerned about the edema (swelling) in his right hand. She was concerned it was due to the PICC line in his right arm. The PICC line is an intravenous line put in the arm that extends all the way to the great artery near the heart. This is what was used to give him the antibiotic for the staff infection for the past two weeks.
She had a nurse come in to consult, since PICC lines aren't her expertise. Nurse Houlston didn't like the looks of it, so we went off to see Dr. Hartman. We were coming up on the time for Chester's next dose (3:49 pm). He was frustrated with the wait and asked me to get him hooked up and start it. I did, right there in the waiting room, except the pump gave an error saying it was occluded - beats the hell outa me - I followed the instructions and was able to expel liquid from it. It likely worked out for the best though.
We got in to see Dr. Hartman - a very positive woman who also clearly cares about Chester. I'm impressed that most of the folks we've seen are patient enough to wait for Chester to find the words and get them out without giving suggestions. One would expect this of these professionals, yet I could imagine there are plenty of docs and nurses who wouldn't be so aware. Jerry (nurse) worked with Dr. Hartman to get Chester into the cancer treatment ward right away in order to have the PICC line removed. With the swelling of his hand there was a concern there could be some blockage, and it had to come out. She assured Chester he could wait five HOURS for the vanco and it would be just fine. I made a point of finding this out, so that Chester could be less concerned about this. I certainly understand his desire to not mess with a staff infection, and time was truly not a concern. She did such a great job of being with his frustration and sadness; I was, again, impressed.
We got into a room in the cancer treatment center and Chester had to pee NOW. It was quite a treat, as the narrow bathroom had bars on the walls on either side of the toilet, and while Chester is adept at this, the bars made it 10x easier. He looks forward even more to having the bar installed in his bathroom.
After he was in the bed, Rosie, his nurse, came in. Instantly the room was filled with an energy that communicated, "This is a piece of cake. It's handled. We'll have this done in a jiffy." Talk about competence - she's really great. She hooked up a new IV in Chester's left arm, and while talking, pulled the PICC line out of his arm before he even knew she was done. Just superb. While the vanco given by the PICC line takes an hour for the pump to infuse, the protocol they have for a peripheral vein (the arm) lasts two hours. It started at 5 pm, so we weren't gettin' out of there 'til 7. Chester was a bit frustrated, and then we both had a brief cry while I held his hand. It was very cleansing. Chrys, Seth & Jaime were supposed to come over for dinner at 6:30. I called Chrys who called Jaime. I called Marilyn and Jaime. Chrys called and emailed Seth... You get the picture - all God's children was calling all God's children. I still haven't found out if Seth got the message, so I called again tonight to apologize for any inconvenience.
We then relaxed into waiting for the infusion to be done, and simple enjoyed talking and holding hands. I credit Drs. Champion and Hartman and our nurses, Jerry & Rosie for turning what could have been a really unpleasant experience into what we reframed it as: "An Adventure."
Chrys was concerned to hear about this development. She asked if Chester wanted her to come down there. I could hear the concern in her voice. Chester asked me to tell her no - it wasn't necessary. Chrys has worked so hard, being the primary caregiver to Chester. It's a bit tough for me to tell her "Don't worry, I've got it handled." While I definitely believe that to be the case, it makes so much sense she'd have such a feeling of ownership to tend to him with a turn of events like this. I assured her that Chester had a mother sow with him (that's me - Chester taught me years ago that the mother sow is probably the most protective mother in the animal kingdom), and that she should relax and enjoy her week off.
I was glad I was here to support Chester today. And the point at which we had our cry together I popped into the sadness I have for this dear friend of mine going through this challenging and sometimes painful experience. Much of the time I am peaceful with Chester and his experience, and in that moment it just sucked and I didn't want it to be happening to him.
Rosie came in and talked to Chester while she got him unhooked and wrapped the IV site to protect it until our visits tomorrow (he needs two more infusions: 8 am and 4:30 pm Wednesday). Chester noticed her pendant, which she explained is a Gaelic bird goddess. Again with the animal totems! Fascinating. Rosie informed us it was too late to schedule the ultrasound that Chester needs tomorrow just to make sure there are no clots from the PICC line. We'll have to do that in the morning. Holy crap, tomorrow is going to be a full day. I just remembered we need to pack snacks - not sure how that's going to work now... Oh well, I'm sure we'll figure it out.
Jaime was kind enough to join us for dinner and bring the sushi to feed us. We ate a huge amount of it, and Chester definitely put away the most - while he hasn't enjoyed salmon much before, he is currently craving every part of the animal, including the skin. We had a nice dinner, then talked about coordinating information, etc. Chester took another walk around the kitchen, and Jaime was kind enough to do the dishes while we did the bathroom routine.
I asked Chester earlier in the day if he'd thought about trying an electric toothbrush. He hadn't and was interested. I mentioned it to Marilyn who left an extra one she had when she stopped by earlier. Chester LOVES it. While he doesn't have much feeling on the right side of the body (he's calling himself a hemiplegic), he said he could feel the stimulation of the brushing, and was very excited about it. I asked if we should try the brush on his arm and leg. He looked at me, both flatly and with a small smile, and said no.
We sat and talked for a while, then did the nighttime routine. I hope to have more time to describe more of these things to you, and not tonight. He's once again sawing down another tree beyond the wall behind me. We were both exhausted and quite satisfied with a very full day. I've been calling this week 'vacation,' and while It's true I've vacated Wisconsin (and thank God, since it was -2°F when I left), this is not a "sit by the pool and relax drinking pina colatas" vacation. And I would rather be nowhere else on the planet.
I got up several times during the night to help Chester. It was a bit uncanny how a couple of times I woke up about a minute before I was needed. I guess it's not all that surprising - Chester and I are pretty connected.
We got him out of bed by 7:45, dressed, bathroom and then time for breakfast. There's a great bakery nearby where a friend of Chrys's works (or owns?). The scones are amazing - Chester makes a porridge by dissolving one or two in hot water. I figured, 'when in Rome,' and had the same breakfast myself. Wow are they good! Quite a satisfying breakfast, too.
Doreen, the physical therapist, came by at 9. Yesterday Chester took one lap around the kitchen table and had had enough. This morning he walked outside, up a full flight of stairs, back down, around the common area outside and back in! That's walking for 1/2 hour! Even with a couple of minute-long breaks, the improvement from yesterday is marked, even to someone as unfamiliar with his progress as I. Then they got on the massage table and did stretching and strength exercises. It was a great workout. Doreen is really positive and responsive to Chester. She told him he would be getting his dorsal flexion back in his right leg (which would help him walk even better). He is quite heartened by that.
[I got some really great pictures of Chester walking and doing the stairs, and I'm sorry I don't have time to process them now. I hope to some time this week, and will let you know to come back to THIS post to see them.]
Next came his speech therapist (forgive me, I can't think of her name now). I took a nap during their session (was it 1.5 hrs or 2?) and only heard the first and last parts of it. They talked about animal totems. I'm not sure whether to be amazed with Berkeley and the surrounding area or the people Chester attracts to himself or both.
Next we had lunch, which consisted of a wonderful squash soup from Joe Kramer and Chester devoured the rest of Chrys's salmon. I had some turkey & stuffing. Then apple pie (Chester had 1.5 helpings).
We packed up and went to Alta Bates to see Dr. Champion. Talk about a Dikensian name - she certainly is a champion for him. I took an instant liking to her. She talked about the MRI results (nothing new from what was posted previously). She was concerned about the edema (swelling) in his right hand. She was concerned it was due to the PICC line in his right arm. The PICC line is an intravenous line put in the arm that extends all the way to the great artery near the heart. This is what was used to give him the antibiotic for the staff infection for the past two weeks.
She had a nurse come in to consult, since PICC lines aren't her expertise. Nurse Houlston didn't like the looks of it, so we went off to see Dr. Hartman. We were coming up on the time for Chester's next dose (3:49 pm). He was frustrated with the wait and asked me to get him hooked up and start it. I did, right there in the waiting room, except the pump gave an error saying it was occluded - beats the hell outa me - I followed the instructions and was able to expel liquid from it. It likely worked out for the best though.
We got in to see Dr. Hartman - a very positive woman who also clearly cares about Chester. I'm impressed that most of the folks we've seen are patient enough to wait for Chester to find the words and get them out without giving suggestions. One would expect this of these professionals, yet I could imagine there are plenty of docs and nurses who wouldn't be so aware. Jerry (nurse) worked with Dr. Hartman to get Chester into the cancer treatment ward right away in order to have the PICC line removed. With the swelling of his hand there was a concern there could be some blockage, and it had to come out. She assured Chester he could wait five HOURS for the vanco and it would be just fine. I made a point of finding this out, so that Chester could be less concerned about this. I certainly understand his desire to not mess with a staff infection, and time was truly not a concern. She did such a great job of being with his frustration and sadness; I was, again, impressed.
We got into a room in the cancer treatment center and Chester had to pee NOW. It was quite a treat, as the narrow bathroom had bars on the walls on either side of the toilet, and while Chester is adept at this, the bars made it 10x easier. He looks forward even more to having the bar installed in his bathroom.
After he was in the bed, Rosie, his nurse, came in. Instantly the room was filled with an energy that communicated, "This is a piece of cake. It's handled. We'll have this done in a jiffy." Talk about competence - she's really great. She hooked up a new IV in Chester's left arm, and while talking, pulled the PICC line out of his arm before he even knew she was done. Just superb. While the vanco given by the PICC line takes an hour for the pump to infuse, the protocol they have for a peripheral vein (the arm) lasts two hours. It started at 5 pm, so we weren't gettin' out of there 'til 7. Chester was a bit frustrated, and then we both had a brief cry while I held his hand. It was very cleansing. Chrys, Seth & Jaime were supposed to come over for dinner at 6:30. I called Chrys who called Jaime. I called Marilyn and Jaime. Chrys called and emailed Seth... You get the picture - all God's children was calling all God's children. I still haven't found out if Seth got the message, so I called again tonight to apologize for any inconvenience.
We then relaxed into waiting for the infusion to be done, and simple enjoyed talking and holding hands. I credit Drs. Champion and Hartman and our nurses, Jerry & Rosie for turning what could have been a really unpleasant experience into what we reframed it as: "An Adventure."
Chrys was concerned to hear about this development. She asked if Chester wanted her to come down there. I could hear the concern in her voice. Chester asked me to tell her no - it wasn't necessary. Chrys has worked so hard, being the primary caregiver to Chester. It's a bit tough for me to tell her "Don't worry, I've got it handled." While I definitely believe that to be the case, it makes so much sense she'd have such a feeling of ownership to tend to him with a turn of events like this. I assured her that Chester had a mother sow with him (that's me - Chester taught me years ago that the mother sow is probably the most protective mother in the animal kingdom), and that she should relax and enjoy her week off.
I was glad I was here to support Chester today. And the point at which we had our cry together I popped into the sadness I have for this dear friend of mine going through this challenging and sometimes painful experience. Much of the time I am peaceful with Chester and his experience, and in that moment it just sucked and I didn't want it to be happening to him.
Rosie came in and talked to Chester while she got him unhooked and wrapped the IV site to protect it until our visits tomorrow (he needs two more infusions: 8 am and 4:30 pm Wednesday). Chester noticed her pendant, which she explained is a Gaelic bird goddess. Again with the animal totems! Fascinating. Rosie informed us it was too late to schedule the ultrasound that Chester needs tomorrow just to make sure there are no clots from the PICC line. We'll have to do that in the morning. Holy crap, tomorrow is going to be a full day. I just remembered we need to pack snacks - not sure how that's going to work now... Oh well, I'm sure we'll figure it out.
Jaime was kind enough to join us for dinner and bring the sushi to feed us. We ate a huge amount of it, and Chester definitely put away the most - while he hasn't enjoyed salmon much before, he is currently craving every part of the animal, including the skin. We had a nice dinner, then talked about coordinating information, etc. Chester took another walk around the kitchen, and Jaime was kind enough to do the dishes while we did the bathroom routine.
I asked Chester earlier in the day if he'd thought about trying an electric toothbrush. He hadn't and was interested. I mentioned it to Marilyn who left an extra one she had when she stopped by earlier. Chester LOVES it. While he doesn't have much feeling on the right side of the body (he's calling himself a hemiplegic), he said he could feel the stimulation of the brushing, and was very excited about it. I asked if we should try the brush on his arm and leg. He looked at me, both flatly and with a small smile, and said no.
We sat and talked for a while, then did the nighttime routine. I hope to have more time to describe more of these things to you, and not tonight. He's once again sawing down another tree beyond the wall behind me. We were both exhausted and quite satisfied with a very full day. I've been calling this week 'vacation,' and while It's true I've vacated Wisconsin (and thank God, since it was -2°F when I left), this is not a "sit by the pool and relax drinking pina colatas" vacation. And I would rather be nowhere else on the planet.
posted by Jay Edgar at 10:54 PM
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