Touched by an angel?
Hopefully, today marks the end of scrambling for coverage; Margaret begins tomorrow. She is scheduled to be here on Wednesdays and Thursdays from now on. Brad is working on changing the CSSS caregiver’s days to Monday and Tuesday, even though there will be coverage (Yaron on Mondays and Manuela who cleans my house on Tuesdays).
He is also working on having someone come in to bathe Gilly once a week, which ought to help a great deal. I discovered that a lifting bar (I forget what it’s called exactly, but it’s a gizmo designed to help him lift himself up to a standing position) is mandatory if we are to have the CSSS come in and bathe him. Now I have to decide exactly where he will have his shower, before I go ahead and install a bar. The bathroom upstairs seems too small, but the one downstairs has glass doors, which will need to be removed. I may need technical assistance for this, although I may be capable of figuring it out myself. This will be Friday’s project. It seems reasonable to set up the bathroom he always used for showering as his permanent spot. I think he would prefer this, and it would make it easier and less painful, since I do not pass that bathroom as many times a day. However, it means going downstairs to bathe. I must consider all the angles before installing anything permanently.
The CSSS received Robert’s report today from the O.T. Dept. at the Neuro (amazingly swift). He sent it on to Peggy for interpretation, since it is written in O.T. lingo. I’ll hear back from Brad on Friday regarding all the details.
I mentioned to brad that Liylah’s heartworm pill is due this week, and so must Gilly’s B12 shot, since they coincide. The original nurse has been off on a personal leave for a couple of months now (her dad is ill) and the replacement is now on sick leave. He checked on the situation and arranged an appointment for Friday. Good thing Liylah’s heartworm reminder is on my calendar.
I received a call back from Erika, Gilly’s primary oncology nurse today at noon. She only received yesterday’s message today. I do not have the opportunity to be more persistent, since I make calls between classes and meetings, and what not, so I probably sip through the cracks. It may be in our best interest for me to become more of a squeaky wheel, but making the one call is overwhelming enough during the work week.
It seems that Dr. Kavan is away on vacation until next week, so he cannot answer my question. Erika said she’d contact the oncologist replacing him (I didn’t get the name) and get back to me, but I never heard from her. I held off on dispensing the Temodal for one more day. I continue to question the purpose at this stage in the game. It’s a quality of life issue, as I was advised early on in the game, and since Temodal is not curative, I’d like the experts to rethink the protocol. Why make him any weaker, or any more drugged up, or compromised further in any way? If the oncologist comes forth and explains that there is a chance that the condition will worsen (neurologically) before it gets better, then perhaps it’s worth the trouble. I simply want more information before putting him through any form of grueling treatment. Temodal exhausts him. He sleeps most of the time as it is…I wish I had answers.
I’m heading into yet another day waiting for the buzzing of a cell phone hidden in my pocket (on silent, of course, out of respect for the particular work environment I’ll be in tomorrow; day care center classrooms). I’ll be glad when I finally receive guidance from Erika.
On her way out today, Margaret marveled at how well I’m handling the situation. Countless people have made this same comment to me. I refute the claim each time, insisting that I have no choice. I either handle matters or fall apart. It’s that simple. She went on to say that some people she has come into contact with through her work with this agency manage the situation, but few exhibit as much apparent love and compassion. That was what really impressed her. Her explanation made me feel warm and fuzzy. I showed off our wedding picture (hippie style, as my children would say), and told her how I fell in love with Gilly the moment I set eyes on him, and that he asked me to marry him 10 days later. “That’s who we are,” I declared, “mutually devoted.” We spoke awhile longer, and I sensed that we shared a common philosophy. I hope my instinct is correct. I am operating on low fuel today, so I could be mistaken. Is she that angel I was expecting to grace our doorstep? Time will tell.
He is also working on having someone come in to bathe Gilly once a week, which ought to help a great deal. I discovered that a lifting bar (I forget what it’s called exactly, but it’s a gizmo designed to help him lift himself up to a standing position) is mandatory if we are to have the CSSS come in and bathe him. Now I have to decide exactly where he will have his shower, before I go ahead and install a bar. The bathroom upstairs seems too small, but the one downstairs has glass doors, which will need to be removed. I may need technical assistance for this, although I may be capable of figuring it out myself. This will be Friday’s project. It seems reasonable to set up the bathroom he always used for showering as his permanent spot. I think he would prefer this, and it would make it easier and less painful, since I do not pass that bathroom as many times a day. However, it means going downstairs to bathe. I must consider all the angles before installing anything permanently.
The CSSS received Robert’s report today from the O.T. Dept. at the Neuro (amazingly swift). He sent it on to Peggy for interpretation, since it is written in O.T. lingo. I’ll hear back from Brad on Friday regarding all the details.
I mentioned to brad that Liylah’s heartworm pill is due this week, and so must Gilly’s B12 shot, since they coincide. The original nurse has been off on a personal leave for a couple of months now (her dad is ill) and the replacement is now on sick leave. He checked on the situation and arranged an appointment for Friday. Good thing Liylah’s heartworm reminder is on my calendar.
I received a call back from Erika, Gilly’s primary oncology nurse today at noon. She only received yesterday’s message today. I do not have the opportunity to be more persistent, since I make calls between classes and meetings, and what not, so I probably sip through the cracks. It may be in our best interest for me to become more of a squeaky wheel, but making the one call is overwhelming enough during the work week.
It seems that Dr. Kavan is away on vacation until next week, so he cannot answer my question. Erika said she’d contact the oncologist replacing him (I didn’t get the name) and get back to me, but I never heard from her. I held off on dispensing the Temodal for one more day. I continue to question the purpose at this stage in the game. It’s a quality of life issue, as I was advised early on in the game, and since Temodal is not curative, I’d like the experts to rethink the protocol. Why make him any weaker, or any more drugged up, or compromised further in any way? If the oncologist comes forth and explains that there is a chance that the condition will worsen (neurologically) before it gets better, then perhaps it’s worth the trouble. I simply want more information before putting him through any form of grueling treatment. Temodal exhausts him. He sleeps most of the time as it is…I wish I had answers.
I’m heading into yet another day waiting for the buzzing of a cell phone hidden in my pocket (on silent, of course, out of respect for the particular work environment I’ll be in tomorrow; day care center classrooms). I’ll be glad when I finally receive guidance from Erika.
On her way out today, Margaret marveled at how well I’m handling the situation. Countless people have made this same comment to me. I refute the claim each time, insisting that I have no choice. I either handle matters or fall apart. It’s that simple. She went on to say that some people she has come into contact with through her work with this agency manage the situation, but few exhibit as much apparent love and compassion. That was what really impressed her. Her explanation made me feel warm and fuzzy. I showed off our wedding picture (hippie style, as my children would say), and told her how I fell in love with Gilly the moment I set eyes on him, and that he asked me to marry him 10 days later. “That’s who we are,” I declared, “mutually devoted.” We spoke awhile longer, and I sensed that we shared a common philosophy. I hope my instinct is correct. I am operating on low fuel today, so I could be mistaken. Is she that angel I was expecting to grace our doorstep? Time will tell.
posted by Gilly at 8:13 PM
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