I haven't talked to Dad yet this morning (hopefully he's getting some rest!) but I figured I could share about yesterday. Mom's coloring was SO much better when I got to the hospital yesterday morning. She had sparkle in her eyes again and had lots of moments when her personality peeked through yesterday. Over the course of the day (of course always when a doctor or other medical staff came to evaluate her!) she was pretty coherent and often even pretty much her normal self about 40% of the time. The other 60% is a totally different story! Sometimes the changes are gradual slipping or regaining of clarity, while typically they are sudden, abrupt and flip on and off like a light switch.
The "good" spells are SO good that when my neurologist came to evaluate her yesterday afternoon she was doing so great he was ready to write her discharge papers because her MRI had also come back clear. We convinced him this was not nearly full-time state and that she was still too non-ambulatory to even get to the restroom yet. He was genuinely surprised (and so was she, I can't imagine the horror!) to hear us describing the full situation. I'm so thankful he finally understood the need for further testing! I hate that my Mommy briefly got excited that she was going home and we had to squelch her joy.
The current thoughts are that it was a TAI, some weird seizure disorder (given her age, how they can manifest, and the sporadic nature of symptoms), or even the possibility of a strange migraine manifestation has been suggested. Within a matter of minutes of posting that Mom's MRI was clear and they were saying no stroke, I heard FIVE different stories of similar strokes that were not found until a second MRI several days after the event, so I'm still not ruling out this possibility either! The simple truth is that we do not know what is going on right now! There are many more questions than answers. I rest in the realization that while we don't, God does! Please join us for praying for wisdom and clarity for our doctors, along with continued healing for mom and peace for all of our family.
Fairly early yesterday morning, mom had a swallow study done. She has a slightly slowed swallow reflex but a good ability to clear her throat or cough, so she is now allowed tiny sips of regular, non-thickened liquids (no straws as this shoots too much liquid to quickly into the mouth) and very soft solids (applesauce, tuna salad, pudding, etc.). She loves milk shakes (served by tiny bites on a spoon) as much as I did! :D
They will come back today for speech evaluation. I'm not quite sure what to expect. Sometimes she is SO clear, so in control, so "normal" (and seems to have a sense of when medical staff are there, or even tends to do better with very short-stay visitors in the room than the norm we are witnessing). More typically, we either hear non-sense words/phrases, or interesting sentences like when she wanted help with her with her bedpan and tangled sheets yesterday (I finally figured out!), it was, "Can't you? It's hard sitting on lions!" or a sudden outburst of "Mark's wittle, wittle...I need, I need...hug NOW!" To calm her down we gave her hugs and put a pillow in her arms to hold. I THINK she was talking about a friend Mark who had been to visit a couple hours earlier (but his little kids are in college now!) or confusing my husband with my brother-in-law's name and wanted to see my kids (her grandchildren). When I asked her if she was talking about my littlest and mentioned his name she said, "OK?" as if she was being informed of what she meant, but wasn't at all sure.
Speaking of speech, she will be glad to know that her singing voice is still beautiful! Took her ST by amazing surprise yesterday. :D
When we were talking about the clear MRI an hour or so after the neurologist had come and gone and after a nutrition lady had been there talk about menu. Mom was expressing her relief that the doctor had said the MRI had shown no signs of stroke, but perhaps it had been a "mushroom soup" (TAI or "mini stroke" or "almost stroke" as my neurologist put it.) She wanted to be sure her brother and my brother both knew that.
I did have her talk briefly to both my brother (her son, though she called him by her brother's name) and my two youngest kids, yesterday, after she settled and cleared from the "hug NOW" episode. She did amazingly well with Dan (my brother) and got a couple of pretty clear sentence out to my youngest. She got about a full sentence out to our 11-year-old, but by the second, she was really deteriorating so I took the phone back as she was obviously quite frustrated and I'm sure our daughter was getting pretty scared and confused. I hate talking on the phone since my strokes, so while it was good for her to hear a few beloved voices, I can really grasp her anguish when she was trying to say hi to our daughter.
At her PT (physical therapy) and OT (occupational therapy) evaluations, she was already able to get sat up (took about 5 minutes to accomplish the goal, but she did it!) on the edge of the bed, without even needing to hold on to anything for support once she was well positioned with her feet flat on the floor. She couldn't tolerate more than a few minutes upright, but she did manage a few, so this was big progress. I think it was well into my second week before I could manage the same, but still needed to hold on to something for support even well after I graduated from the rehabilitation hospital! She still has a hard time even with the bed being elevated to upright (she can't tell me if this causes pain, nausea, dizziness, or just what, but obviously something quite unpleasant!) so this feet was truly impressive.
They also managed to get her to a standing position for about 30 seconds, the two therapists obviously supporting her body weight, but they did it. After this she was nearly crying and couldn't get more than "I... need..." out but was obviously wanting to lay back down as quickly as possible. Today the goal is to try to work on getting her upright in a chair for a bit.
After that, her coloring wasn't nearly as good for a couple of hours. I told her she had worked hard (wow, had she ever!) and that it was OK to rest for a while now. I think she napped for all of three minutes after that. I told my dad I think she wanted to be sure she didn't miss anything exciting! She spends much of her day just staring at the ceiling, but has a very hard time sleeping much, at least during day hours. Dad got praise music playing in her room yesterday and she loves that. She also loves bright and pretty things and the Christian t-shirts I've worn these past two days.
If anyone wants to send her colorful cards, she is in Renown Regional Medical Center, room Sierra 193, Elizabeth (Betty) Camp. She got really excited when the speech therapist put her dietary instruction "card" on her wall yesterday, so we know she would love more cards! If you come to visit, she would LOVE the company, but please keep visits fairly brief (10 minutes or so is a good window to shoot for, it seems) and please remember that I am highly reactive to latex, so no regular balloons in her room (Mylar are great!) or I will not be able to be there any more. I think I will try to take her some pretty roses from my garden today before they all freeze (if I can figure a way to carry them in with my cane).
Mom wants to know what every sound out in the hall is, what anyone is saying near her, lots of confusion and questions, like when another patient's nurse call button goes off, when a linen cabinet opens across the hallway, when dad is quietly explaining the situation to a concerned friendly visitor, she wants to know every single detail, again and again, as if for the first time. We try to talk to her as much as possible, but can't typically hold much of a conversation because it is rather one-sided. I'm still learning how to phrase things because a question like, "Would you like me to pull your blankets up or are you comfortable?" will likely be answered with, "Yes." (Pull up her blankets? She's already comfortable? What should I do?) I think I will try reading a book to her this afternoon and see how that goes.
Cognitively, she seems to fully understand about 90% (maybe more!) of what is being said to her or going on around her. When it comes to following specific instructions like, "Tap your toes of your right foot, this foot [tap her knee], on the floor" there seems to be about 80% understanding, or at least ability to follow through. Simple decisions like if she would rather try peaches or pears for lunch are agonizing and nearly crisis choices still. Thinking back, she was starting to feel panicked over minor choices (take this into the house or leave it in the car?) as early as Thursday evening. She described it then as "hitting the wall" and that she was just "too exhausted to make any decisions".
Yesterday morning she could not move her arms much at all. By the afternoon she was able to get a hand up to rub her own nose or forehead a few times. In fact, she keeps rubbing hard at her forehead then carefully inspecting her fingers as if she expects to see something (like blood maybe?) there, but she cannot tell me why. (She was also NOT able to get her hand up several times.)
She wiggles around and wants to ask for things, but is frustrated over what she cannot express. Yesterday something was really upsetting her with her socks. She could not tell me nor even answer enough yes or no questions that we ever figured it out. Eventually she seemed the most settled with one sock on and one off, but I still don't think I got it right! She eventually gives up and says, "Never mind." Heartbreaking!
When drinking, she clamps down with her teeth and will not always let me get the cup back from her "little sip" before flooding herself. I hate the panic on her face as I try to coach her through opening her teeth and letting go of the cup. Yesterday afternoon she decided she was going to hold her own cup, but I insisted on holding it with her. She was able to get her hands up to her lips but not able to control water flow AT ALL yet. She also would not let go of the cup when I tried to take it back and panicked with each hand that I eventually pried off. I figure all this is being amazing therapy for me too!
She is in a lot of pain. Yesterday she shuddered and sighed and moaned as she tried to shift in the bed. I asked her what was wrong and she cried out in frustration, "I just hurt so much!" I told her the nurses could help with that and we got morphine ordered (I think they gave it to her 3 times Sunday too). She could never tell us exactly where she hurt (best guesses are upper back/shoulders and probably legs too), but she did settle down quickly and seemed much more comfortable within moments of getting the morphine in her IV. Whew!
I know she was having a hard time again by last night and Dad said they had promised another dose with her evening medicines. According to my dad on the phone last night, about 8:30, just ONE therapist got her out of bed for the bathroom and she could get there and back with a walker already! I'm excited and stunned. As our oldest reminded me, "God still does miracles!"
Re-post of paragraph last night: For those wondering, yes, my parents have asked that I still have my stroke-a-versary party at the Renown Rehabilitation Hospital this coming Saturday. I was set to cancel, in light of my mom's unfolding and unplanned journey, but I think that they would be quite disappointed if I did. (Rick said he would back my decision either way, but I'm excited that my parents want me to go ahead as I felt I "should" cancel but really didn't want to if we could still pull it off!) Best case, we hope to have my mom already moved over a settled into that facility before my open house and she gets to attend as a resident guest!
Satan's like a roaring lion. Praying for strength as we are learn to sit on lions! It IS hard, but through Christ, all things are possible.