First, I wanted to thank each of you for your thoughts and prayers, they are truly appreciated and desperately needed. Second, I just wanted to give everyone an idea of what is going on with my mom and our family.
We spend a lot of our time on the R1 train between Woodbourne Station and University City or stealing chairs from various waiting areas in the hospital and cramming them into my mom’s room. On any given day there are about 11 of us seated in her room, the portable toilet has become a seat of choice as well as your coat thrown across the floor. My mom’s condition has deteriorated some since last Thursday when she was transferred to HUP, although her legs and arms are extremely strong she doesn’t have the balance to walk or some of the coordination needed to feed herself all the time and her speech is severely slurred, but her thought process is quick and sharp.
Some days are considerably better than others, she has always suffered from restless leg syndrome and it is much worse now that she cannot just get up and walk around and she tends to get very agitated and upset by this. Some nights she cries to go home and tells her doctors that she has to take care of Woodrow and Wilson (her 2 yellow labs). My stepfather, Dan, continues to sleep on the floor by her bed and is yet to leave the hospital since her arrival, on the worst nights Dana sleeps in the recliner by her bed, which I think is a definite reject from the 70s.
We are trying to get used to the fact that when the nurse tells us the “doctor” will be in between 9-11am she actually means that 6-8 doctors will arrive to gather around the bed beside our 11 or so family members. We have become extremely familiar with her oncology team, neurology team, neurosurgery team and now her immunology and infectious disease teams.
Today we have received clearance from the head nurse and hospital security to bring the kids to visit her as it is my birthday and my sister Kelly has made arrangements to have lunch brought in from the Olive Garden along with a cake. I can honestly say these are some of the most difficult moments in my life but this will be the birthday I remember fondly for years to come.
The infectious disease team has started conducting tests on her immune system and would like to try treating her with a drug called mefloquine which is used in malaria patients. The side effects are severe and her oncologist who leads this crazy circus is not sure if this is the route we want to take. We have prepared ourselves for the worst as best we can and continue to hope for the best. My 4-year old son, Connor, told me this morning, while we enjoyed the fruit arrangement sent from my office together, that even though Grandmom “has a lot of booboos” we should always remember “to not be afraid of the dark.” I think that might be some of the best advice I have received so far and I am going to take it.
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