Medical Update

There are more special events to share from our Christmas weekend but first we wanted to give you an update on My Mom since there have been a few changes.

Its looking like the continued writing on this blog will be mostly from me. My Moms right hand has continued to deteriorate and typing gets frustrating for her. I'm hoping she will be up to write a few sentences here and there but this week she has not been up to it.

Yesterday we had an appointment at the UCI Palliative Care Clinic and it was a good experience for us. This is how they explain palliative care:

"Palliative Care is comprehensive treatment that aims to improve the
quality of life of patients and their families when facing a serious or life
threatening condition. The word palliate means to ease or comfort through the
prevention and relief of suffering. It focuses on early assessment and treatment
of pain and/or other emotional, spiritual, or physical problems."

A palliative care Dr does not treat actual diseases they treat the symptoms and side effects of the disease to keep patients comfortable. We really liked the Dr and he informed us that the pain she is experiencing in her left arm each night is what they call sympathetic nerve pain. All of the painkillers we have are completely ineffective on that type of pain but we do have a few options. The most promising is a nerve block which she will getting on the 5th.

The palliative care clinic also has an anesthesiologist who makes sure that the medications we are using are the most effective as well as making sure that the medications do not interfere with one another. They changed a couple of my Moms medications yesterday and we will see how she transitions onto them.

While ALS is obviously not a party to deal with, it gives us peace to know that it is not a painful disease. The pain she is having in her arm is from the atrophying in her muscles and her inability to move her arm in the night. Most of us naturally move our body while sleeping if we are uncomfortable. When her arm becomes uncomfortable in the night her nerves tell her arm to move but since there is a disconnect to the muscle her arm does not move. The pain builds through the night until it wakes her up. During the day her pain in that arm is between a 0-1. When she wakes up in the night her pain is between 5-8. Hopefully the nerve block will eliminate that.

We also started Home Health Care with St Joe's this week and we are happy to have a nurse coming in and regulating her progress as often as they think necessary. I mentioned earlier how we are unique because my Mom is not on Medicare. At this point most people with ALS would likely go to hospice but with private insurance we will go through Home Health for now and eventually switch to hospice. So far we have been really happy with Home Health. They have been attentive and they will be sending the same nurse each visit so that she will be able to recognize changes in my Moms lungs as she listens to them each visit. She is on palliative Home Health Care which means they too are focused on her continued comfort.

The best news is that we have my Moms sister Pam here to stay with us during the week from now on. Two caregivers can care for my Mom but with my kids here its hard to have us both available. My Aunt will be staying with us through most of the week and then either John, Mark, Lisa, Brian, or Kate be here for the weekend to be our third caregiver. My Aunt is the best not only because she is incredibly fun but she is also a nurse! Even better for 10 years she worked for St Joe's Home Health and Hospice and still knows many of the people there. She brings my Mom a sense of comfort with her presence and its been great for my Dad to feel at ease enough to relax a little and get more rest.

My Aunt could not have come at a better time either because my Mom woke up dizzy and nauseous today. We are not sure if it is because she has a virus or if it is because we changed her medications yesterday. My Aunt knows what my Mom needs and worked with the Dr's to get it for her. She keeps my Mom comfortable and her sense of calm and patience keeps us from getting to worried. This is the first day my Mom has not been able to get out of bed all day.

She was running a slight fever at the Dr yesterday - 99.3 which is marginally high for her since all the women in our family consistently run around 97.6. That seems to indicate that this is probably just a virus and we are optimistic that tomorrow she will wake up feeling better. We took her off all the new medications just in case and after she feels better we will start them again, one at a time.

We are keeping her comfortable and with your combined prayers I'm sure she will be up and riding around in her new custom wheelchair that is being delivered tomorrow! Watch yourself on the roads in Brea! She hasn't been able to be independent for a while and you should have seen her cruising Lambert yesterday on our walk!