7:07PM Tuesday - This afternoon, Liza had another ketamine infusion with Leslie, our favorite nurse and by now our good friend. For over an hour we caught up with Leslie on all the things that happened and didn't happen in California. As a highly experienced and brilliant nurse, she gives us great insight and perspective. Her intuition and thoughts on Liza's condition have been so very helpful.
The infusion itself went okay. She said her head felt like a cement block - I took that to mean really heavy, but also less painful. Her nerve pain wasn't cooperating today though. She said she felt burning all over. Liza was quite emotional near the end of the time, which can happen. She feels desperate and at the end of her rope. She doesn't want this to be what her life is like. No one does.
We talked gently to each other and she was able to feel more peace at the end. Seeing Leslie also helped. During much of the time, I was on my laptop putting together a medical history summary and procedure/test timeline to go into our "packet" to send to Boston (a Harvard neurosurgeon) and Dallas (a neural cyst specialist) - hopefully this week. We will see what comes of these leads.
I was able to get her home and to bed a little after 5PM. She is still resting there now.
Yesterday morning we were able to see a doctor that Liza has known longer than she's know me, I believe. Liza was not in a good way as we arrived at her brand new office. This wonderful doc in the Conroe area has walked with Liza through a lot. She was eager to catch up on all things especially test results, doctor's thoughts, medications, nutrition, even emotions and Liza's heart. She is a follower of Jesus and loves Liza very much. At one point she even referenced God's Spirit as she was trying to offer some possible next steps. We both appreciated that so much. We were with her for almost two hours all together.
On the way home I stopped at a specialty pharmacy and picked up some nutritional supplements that the doc ordered for us - phytonutrient protein shakes with an additional container of deep green veggies. I worked hard to make them taste good in our blender when we got home. To her credit, Liza choked down two smoothies yesterday - which were the doctors orders. She's a rule follower.
Because of the infusion today, Liza only had coffee beforehand. When she wakes up from her sleep I'll whip up another shake and hopefully a second before bed.
The last few nights have gone well when it comes to the med schedule, but Liza still peaks in pain in the wee hours of the morning and at sunrise. Still not sure why, but those are hard times. I've written down the meds on little paper cups with the timing at the top. I also set a series of very calm alarms on Liza's phone for med times. She usually just gently rises up, takes her meds, then goes right back to sleep. She's been sleeping pretty well despite the regular interruptions. We are all thankful for that.
Liza's had some more good time with the kids and caught up on all their school progress yesterday from bed. I was also able to catch up with two friends for lunch yesterday, went to a team meeting this morning and then was able to stay for about 20 minutes of our weekly pastor meeting before I left to take Liza to the infusion. It's nothing close to "normal" yet, but it is good to take a small step back into some familiar things.