After a couple of weeks of relative normalcy, Mom is back to having issues. Within the last couple of days, she's started having difficulty keeping food down. And, yesterday, she was running a temperature of 102, which could be related to an infection. More when I have a better idea what's going on... As always, please keep Mom (and our family) in your thoughts and prayers.
Last night, at about midnight, mom woke up! She spoke to the nursing home staff, asked about James, and wanted to speak to him. The staff politely refused to call James, since they knew he'd be there first thing in the morning, like he is every day... When James did arrive, mom chewed him out. She thought he'd been off golfing all this time. And, boy was she mad! (In reality, she's been the one who left the building. James has been by her side almost constantly since this episode began over a week ago.) Jill dropped the twins and I off at the nursing home at about 10:00 this morning. (Jill had an appointment.) My brother (Mike), and his wife (Kristie), arrived a few minutes later. (They arrived from Coeur d'Alene, Idaho last night.) Mom was awake and relatively alert. She made eye contact with me for the first time since this bout of encephalopathy began. And, she coaxed smiles from both Hunter and Grace, who promptly returned the favor. Mike gave her his patented "12 hugs" with kisses to match. It was a very happy room! So, mom is now coming out of her encephalopathy. Last week, she was at "Grade 3" on the 1 to 4 scale of encephalopathy (where 4 = coma). Today, I would say that she's at "Grade 2." She is awake and communicating, though still groggy and having difficulty finding words to express herself. She even fed herself part of her lunch. And, no wonder - her ammonia level has dropped to 106 as of yesterday morning, and is likely still falling as the lactulose seems to be doing its job. I've not spoken to her doctor, but my hope is that her short-term prognosis is now much improved, since she is responding well to treatment. Hopefully, by this time next week, mom will be back to baseline. Though, it is not outside the realm of possibilities that mom could slip backwards. And, quite certainly, mom's long-term prognosis isn't good. The ammonia will be back, and with it will come the encephalopathy. This has been a very scary experience for all of us. Now that mom's regaining consciousness, I'm certain that each of us will find a way to communicate to mom how much she means to us. James, especially, was bouncing around and beaming, today. His girl is on her way back! It was clear to see that he is incredibly happy, which helps mom tremendously. One last bit of news to report today: James went ahead and signed mom up for hospice care. The hospice admitting nurse met with all of us today. She explained the services offered by her team. And, she examined mom, looked at her charts and spoke to the consulting hospice physician about mom's meds. They're going to add something for the itching, as well as a medicine to help with the disorientation/confusion associated with the encephalopathy. More as we know it... Many thanks, again, to everyone who is keeping mom and the rest of us in their thoughts and prayers. We can feel the love!
I just got off the phone with James (mom's husband). He said that Mom appears to be slowly waking up. She is recognizing people and trying to communicate. This could be VERY good news! I'll post more information as it comes in... Thanks to everyone who is keeping mom in their thoughts and prayers.
My mom is terminally ill. She has cirrhosis of the liver, caused by a condition know as NASH. And, recently she took a turn for the worse. Since last Friday, she's been in a semi-conscious state brought on by extremely high levels of ammonia in her blood stream - a condition known as encephalopathy. She is able to respond to simple voice commands. She can answer yes/no questions. And, she's eating when someone feeds her. But, she cannot carry on a conversation. She cannot answer anything but yes/no questions. And, her eyes, vacant and glossy, look right through you when you do manage to get her attention. She spends most of her time in a sleepy haze of pain (from various bruises and sores related to spending all of her time in bed) and itching (from the toxins in her blood stream coming out through the skin). The treatment for this condition is a medication called lactulose, which traps the ammonia created during the digestion process in the colon, before it has a chance to be absorbed into the blood stream. Mom is on a high dose of lactulose now, as she has been for a couple of years. And, between last Friday and last Monday, her ammonia level dropped by almost 100 points. But, at that time, it was still over 160. (Healthy people have an ammonia level below 35.) At this point, the prognosis is mixed. Mom could "wake up" tomorrow, regain some or most of her cognitive abilities, and go on to live for many more months or even years. Or, she could stay in this sleepy, itchy, painful purgatory, eclipsed by this veil of ammonia. Or, she could fall into a complete coma, stop eating, and die. There's just no way to know. What we do know is that if she stops eating, she will pass away from malnutrition within two to three weeks. We've known this was a possibility ever since mom was diagnosed back in December, 2006. We hoped that she would qualify for a liver transplant. But, unfortunately, her disease was already too far along when it was detected. She was never deemed strong enough to survive the operation, and was therefore never placed on the transplant list. Now, she's being placed on a different sort of list - she's being placed in hospice. I know my mom loves me. And, I know she knows I love her. But, I would dearly love the opportunity to tell her one more time, to share one more laugh, and to hug each other and cry together one last time, as would all of her friends and family. Please say a prayer for my mom. May God bless her. May God ease her pain. And, may God share our thoughts and prayers with her so they might give her solace on her journey from us to Him, no matter how long it takes.