8:37PM Sunday - Forgive my blog absence for the past couple of days or so. We were all consumed with landing back at home. There is also not much to report.
As I said before, coming home is welcome and healing, at least in a small way. Being with our kids is clearly the best part. But leaving Cedars Sinai was also very heavy - because we did so with only a bandaid on Liza's life-altering problem. The great nurse and doctor care ultimately led to only pain management. For further exploration of a diagnosis we will likely have to go elsewhere. God has graciously provided a few leads already and we're beginning to make contacts. But the prospect of beginning again, after we've restarted many times already, is almost too much to bear.
There is something unique about chronic pain. I know now that whatever I thought I knew about chronic pain in the past fell woefully short of the full experience - and even that is spoken as the person in the "second chair," as I like to say. Usually its that horrible green fake-leather chair next to the hospital bed. But however bad that chair is, the hospital bed is far, far worse. The reality of such an extended stay in one is even more so. But combine all of that with the total lack of a diagnosis - a named thing with a named medical speciality with specialists and specialized treatments, tested measures and drugs - and the combination is downright maddening, if not sickening.
Without trying to either be morbid or over exaggerating, this is the emotional cloud that has swooped in on the front wing of the latest Houston hurricane.
Liza has spent almost every moment since we've arrived home in bed. She sat on the couch for a while and chatted with the kids, and she has walked into the kitchen a few times. Other than that, she's been in bed, most of that time lying flat or close to flat. Only in that position does the pain lessen even a little. She's been terribly nauseous and has almost no appetite at all. The meds and their very tight schedule are helping at times, but the pain is constantly reminding Liza of its ferocious presence.
The kids are doing okay. They have been so very strong through all of this fight. They are very proud of their warrior-mom. Liza had some girl time with Izzy in our bed last night. I had some guy time with Andrew and a television. I spent most of the day yesterday working in the yard. I call it "sweat therapy." It was good for my soul.
There are still swells of tears throughout the day, from several of us. But even with the taunting possibility of continued suffering, we refuse to give up the fight. Tomorrow we start again and some things are already rolling for the near future. Monday morning we will go to see Liza's primary care physician and catch her up on all things. Tuesday I will take Liza for a ketamine infusion.
Please continue to pray with us for Liza. I know this has been a long fight for you as well - praying the same thing every day. But we need your prayer support and covering.