April 23, 2010
A Cruel Six Days
My family and I honestly thought we'd be planning a funeral by today. Despite my grandmother hating MRI's and our initial refusal of one because of her hate for them and because there was no one giving us any hope for survival, we allowed her to have one on Wednesday. The neurologist basically begged us so that he could try to figure out what was going on. Clinically, she has all signs of a stroke but the CT scan showed nothing.
Right before the neurologist came in, she had been given pain medication because she was rubbing her head and answering a muffled "yes" when I asked her if she was in pain. The medicine zonked her out to the point that she was snoring. I told him we would be ok with an MRI if they gave her some of the same stuff right before so she would sleep through it. He agreed and she did.
When the hospitalist got the report, he sat my Mom and me in the doctor's area to review the results. He read the report and explained what it meant. The damage in the right hemisphere of her brain is catastrophic. The stroke affected two major arteries feeding the brain, the ACA and the MCA. She also has slow flow in her carotid artery. In addition, the frontal, parietal and temporal lobes are all affected. Only a small portion of her occipital lobe remains undamaged. She also had major swelling in her brain that was actually displacing her brain a bit to the side and probably the reason for her decline after she seemed on the mend on Monday night. He said it simply. . . "it was a massive stroke and her changes of surviving it are 0."
We met with social workers and a palliative care doctor and within a few hours, we moved her onto "comfort care." All tests would stop. They even removed the heart monitor she so hated each time she was admitted. The only thing that remained was the bubbling oxygen and an IV port for meds. They assured us that a feeding tube would make things worse, that giving her fluids could be detrimental as well. They said her body is shutting down and we cried and made arrangements with hospice for in-hospital care or a possible move to my Mom's house for however long she has left. They told us we could swab her mouth with coffee or orange juice (her two favorite things) or whatever we liked and that we could even put a dab of ice cream on her tongue to let her slowly melt and give her the taste.
And then the neurologist stopped by to see her. He said that the most merciful thing would be if she did what he expected her to do. By 96 hours post-stroke, the swelling in the brain reaches its peak and he fully expected that to happen. She would have herniated, gone into a coma and slept until she died. He showed us the actual MRI pictures instead of the report and it was devastating to see. Massive isn't the word for it; catastrophic fits better. He didn't expect her to be there when he came in yesterday; but she was.
Before the neurologist stopped in, she opened her eyes really wide and looked right at my Mom. She said her name. Then she said mine. She didn't even have her glasses on but she knew us. She also knew the name of her teddy bear we brought to the hospital from her home. I asked her if she was hungry, thirsty or in pain and she said "no." I asked her "If you were in pain, would you tell us?" She said "yes."
The neurologist stopped in and she was sleeping after communicating with us for a while. At one point, she pulled me out of my chair with her right hand and into her chest. She rubbed my hand on her face and made an attempt to kiss my hand. Then she stroked my hair for a while, sometimes a bit roughly. He examined her, pulled her eyelids up and looked at me in disbelief. "Quite honestly, I expected her to be in a coma or dead. The fact that she's not baffles me." He then asked me some questions about when she last had fluids or anything to eat beyond the swabs and I told him it has been days. After the first day, she lost her ability to swallow. Yesterday, I asked her if she could swallow and she said "yes." He rushed out of the room and said he was making some calls about getting her on fluids. He said, "she is surviving this stroke." He also said that he doesn't understand it and that she is "amazing."
I followed him into the hallway and told him we had moved her to comfort care. I asked him what we should do and he said he honestly never expected her to still be here. He had to hurry and make calls.
A couple hours later, he called my Mom at home and told her that he had ordered IV fluids for my grandmother. He said that he couldn't, in good conscience, not give her fluids. He said, "she is too alive to not give her fluids."
I stopped in later last night again and asked to speak with a doctor. The palliative care doctor had said that giving her fluids might cause more discomfort and I had questions about giving her medications to help with the fluid in her lungs. I spoke with a doctor and her nurses for a while and this morning, the whole stroke team is meeting to come up with a plan for her care. I don't know what is happening right now. None of us know what to think. Is it a miracle or a cruel and evil twist? I know one thing is certain. . . watching my grandmother be like this is akin to torture.
Big I told me that she prayed for a miracle and that her prayers have been answered. Mr. BBM told her that each day that her Great-Grammom is here with us is a miracle and that she shouldn't expect this to last forever. She has to keep her expectations realistic. Everyone dies eventually and Big I needs to be prepared for that. The girls both saw her this week (after I had a conversation with the social worker and did some reading) so they know the state that she is in right now. We also know that she wouldn't want to live if she couldn't walk or do the things she enjoys anymore, and considering the left side paralysis (complete in her arm and about 90% in her leg), expectations need to remain realistic.
Right now, my family is so beat-up and confused. We don't understand why things are happening this way and why this horrible thing had to happen to such an incredible and GOOD woman. And the most upsetting thing right now is that we simply don't know what to do.
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I seem to remember you saying that she said she wasn’t ready to go yet. She’s fighting. Who knows, she could actually fight her way back from this. It remains to be seen.
I’ll be praying for you all, praying that this turns out for the best. xo
I’m keeping you and your family in my thoughts. Been through some moderate strokes with my dad, so I understand a little bit about what you’re going through. I know you have the intestinal fortitude to make the right decisions for your grandmother, come what may.
Hang in there, BBM. Be cautious but glad. Maybe your Gram has some thing unfinished and she *has* to do that before she lets go. 0000 (these are ghost hugs.)
(((BBM))) – it’s terribly difficult when you don’t know what to prepare for. In a lot of ways, being sure death is coming soon is a lot easier than all the uncertainty.
My father-in-law died earlier this week of liver cancer. Up until six days before his death, we still weren’t sure if there was more treatment available, or if we needed to be preparing for the end. When we got the terminal diagnosis, the first reaction was one of relief – at least we knew which way to go and what needed to be done. I can’t imagine what it would have felt like to be yanked back into the melee less than a week later.
Best of luck with your grandmother – may whatever comes bring you, her, and your family peace. You will be in my thoughts and prayers.
Your grandmother reminds me of the saying regarding Hanukkah: A great miracle happened there, referring to the flame in the lamp within the temple remaining lit for eight days when it had only enough oil for one.
Big I is right…that your grandmother’s light has shone on you all for these days is a miracle.
None of us can tell what will come next, so your confusion is understandable, however, I’d say that you’ve showed us all that you know exactly what to do: keep loving your grandmother fiercely…as she still does you.
And know that we’re all out here, with love and prayers for her, you and your family.