Kirsten had trouble with her dinner. Not because there was a problem with her, so much as there was a problem with her dry, cold, and hard chicken. She mostly fed herself, which was very nice (not because I’m a lazy bastard as much as it was great to see her doing something other than laying there).
The girls and Soni and I went to the mall for a brief bit of shopping, followed by dinner at On The Border and a trip to the grocery store.
Hopefully tonight and tomorrow will be as uneventful as the last two days, and Kirsten will be sufficiently healthy for procedures and surgeries that will hopefully happen in the early part of next week.
Kirsten’s morning became a little rough between my phone call to the nurse at 0645 and my visit an hour or so later. She became confused and anxious and possibly suffered another seizure, so they took her down for a CT scan, followed up by a neurological evaluation. I spoke with the neurologist, who said the CT scan of her brain was clear and normal, but that we will continue to monitor Kirsten closely and try to determine if there is a cause of the episodes, and whether or not there is a correlation between them and high blood pressure, which spiked near 180.
I fed Kirsten her breakfast this morning, during which we had a nice chat. She is now having “girl time” with Lisa, her friend and the SCU CNA (they went through CNA training together).
I spoke with Emily, one of Kirsten’s endocrinologists. Cortisol levels are low, which indicates the metyrapone is working. Unfortunately metyrapone isn’t generally available, so we can’t rely on it as a long-term solution. She is concerned because the endocrine issues are extremely serious and complicating everything else, which precipitated Thursday to the point where she very nearly died.
I spoke with a surgical resident this morning, who says we are still on track for the octreoscan on Monday or Tuesday, which will determine next steps.
Soni and the girls are here now. Ciao.
Kirsten had an uneventful night and told her nurse, Joan, to tell me that she loves me very much. She’ll have cinnamon french toast for breakfast. Maggie held her hand for several hours until she fell asleep.
As Kirsten becomes more aware of the seriousness of her conditions and the long, tough road ahead, and begins to understand the limitations and challenges with which she will be faced for the duration of her life, she is becoming increasingly anxious, worried, frightened, and frustrated. This anxiety makes it more difficult for her to sleep. The medical team doesn’t want to introduce medicines to reduce her anxiety, as her medical profile is already so complex, and I agree.
While we are all thrilled that the precipitous slide toward the brink has been halted, and Kirsten’s health is improving, she is far less well than when she entered the hospital a week ago with a very serious medical condition. The doctors have barely begin to treat the endocrine issues. And then there’s the likely metastatic tumors (not an immediate concern) that would, alone, devastate most people and their family. I hate to be a Debbie Downer. I am absolutely thrilled by the exuberant and ebullient comments here and other places regarding the latest improvements. We are all excited Kirsten is awake, smiling, and eating solid food. However, we should be sober in our recognition of the reality of the situation. There has been no miracle. Science has won the day, but there will certainly be many very challenging days ahead.
So, uneventful is good. I’m going to go to the hospital to keep her company, make her laugh, and remind her that she is loved. Having a few visitors may help today, so if you’re interested let me know (before you come to the hospital). Endocrine still has her on a high dose of steroids, so we are working very hard to minimize the risk of infection. Gel in, gel out. No sick visitors. Obv. DO NOT VISIT HER ROOM WITHOUT FIRST TALKING TO ME. (207) 423-7145 <~ Text message only, please.