Today is the first day we have ended better than we started. Phew!
O2 from the vent is at 40%. The endocrinologists are adjusting drugs to isolate cortisol levels and other things. Kirsten is off one of the pressors and the other is significantly reduced. Basically, things are pretty good. Relatively.
The surgeon said he would like for her to be more healthy before surgery. So, we’re going to hold off and wait to do surgery until after the octreoscan, which will happen mostly likely on Monday when we have the radiopharmaceuticals (there is a national shortage, so they have to make a special batch). Either way it looks like they’ll do an adrenalectomy, but if the low resolution scan is negative they might opt to only do the laparoscopic biopsy of the liver lesion (the other is in a place that makes it unsafe to biopsy). The biopsy will have to be done at some point, regardless, because it is a tumor that is probably malignant (cancer).
So, we’re going to take a few days to rest while we wait for the nukes. Then surgery.
Soni and the girls spent most of the day in the waiting room here in the SCU. Jessica Somers took Hayley and her sisters to a local park for a bit, where she showed Hayley some of the basics of soccer. She also bought Hayley a nice soccer ball. Thank you, Jessica. :)
I’m leaving the hospital now since things are pretty quiet and Kirsten is resting. I’ll spend tonight recharging my batteries, looking forward to the next three uneventful days in the hospital.
Thank you all for your continued interest, kind comments, expressions of love, and offers of help. We love you!
Kirsten’s O2 from the vent is at 50%, which is good, and she is completely off one of the two blood pressure medications (pressors) and the other is being reduced slowly.
The octreoscan can’t happen immediately. Essentially, the radiopharmaceutical (nuke) they need to inject into her blood isn’t available, and to make some requires several days even in an emergency like this. So, do we wait for the nuke while we watch her health continue to deteriorate? The test doesn’t have a high resolution (basically, it’s not good, but the best available), and might not see things that are there. If there are multiple tumors that may be responsible for the ectopic ACTH, they will do an adrenalectomy. If the test shows zero tumors they will do an adrenalectomy (assuming that the high cortisol levels are the result of pituitary production of ACTH). So, the only reason they wouldn’t do an adrenalectomy is if there are one or two tumors, at which point they would remove those. But we won’t know for several days.
I stood with the medical team this morning as they did their rounds, which was nice. I’m learning so much, which I enjoy.
Soni brought the girls up to the hospital. They were able to see Kirsten for a few minutes. Because she is sedated and intubated, it is impossible for her to talk, and trying to communicate to them causes her some stress. She was able to squeeze each of their hand and offer a hint of the huge smile that is in her mind. It wasn’t easy for the girls to see Kirsten is such a miserable condition, but I think they all appreciated the time and touch, nonetheless. I ate lunch with the girls in the waiting room before returning to sit with Kirsten.
One of the nurses who was helping re-position Kirsten (to prevent bed sores) braided Kirsten’s hair, which was very sweet (and will make it easier for them, I’m sure).
Not much is new. Still waiting for her health to improve for surgery and to get final word from the endocrine and surgical teams. I’ll keep you posted.
Kirsten hasn’t eaten since Monday. Things that would ordinarily be a huge concern become relatively insignificant when the shit hits the fan.
Kirsten’s co-workers in cardiology are reading this blog, I understand. I hope I’m getting all the terminology correct. I feel like I’m getting a crash course in medicine, and doing the very best I can to get it right. ;)
The plan is to do an octreotide scan to identify if there are metastatic tumours in Kirsten’s abdominal and chest cavities. If that shows multiple tumors, or none at all, they will perform an adrenalectomy of both adrenal glands (they are producing high levels of cortisol, which is the primary culprit of the endocrine problems for which we first came in and why she is now so sick). If the octreoscan shows one or two tumors (mostly likely in the liver: two lesions have already been discovered using a CT scan), they will try to remove those.
The octreoscan is non-invasive and can most likely be done today. However, Kirsten is not healthy enough to undergo surgery. She remains on the ventilator, which has been reduced over night to 70% O2 from 100%. You and I breathe 20.95% oxygen. Also, her blood pressure is too high for surgery, and is being reduced to those high levels by multiple blood pressure meds. She must improve before anything else can be done.
In addition to not knowing the source of the ACTH, they also do not know why she has fluid build-up in her lungs and requires the ventilator. They suspect an infection and have sent blood cultures to the pathology lab. Until they get the results they are treating her with high levels of antibiotics. Obviously, surgery will not be an option if there is a serious infection compromising her general fitness.
It’s time for some good news, wouldn’t you agree? Kirsten sometimes wakes up. Clancy, her nurse last night, said she is not heavily sedated, but at approximately the level of two or three cocktails. She is intubated, so can’t speak, but she smiles when I tell her I love her and squeezes my hand three times in response, which has for many years been our silent way of telling each other of our love. She can wiggle her toes when asked to, which is a positive indication. Her arms continue to be restrained, which causes her a little panic when she wakes.
The doctors and nurses and therapists are doing an exceptional job and communicating with me frequently. They conference with doctors at other clinics and hospitals, and across disciplines.
Things change by the minute, and there are plans and contingency plans. We continue to shift priorities and procedures depending on myriad factors and requirements. Kirsten’s health is extremely serious and complex, and nobody is suggesting anything close to a full recovery is possible.
I am hopeful and strong. Clancy told me last night before I left, when asked how she copes emotionally with these patients daily, that she has to detach. Then she said that it isn’t possible with Kirsten. I figured she was just being nice, and that she probably says that to all the families. Then she continued and said that Kirsten is “one of us.” She said they all see her working upstairs, eating in the cafeteria, or in the hallways. Kirsten has worked at Maine Medical Center for several years and is always a hard-working, smiling, friendly presence. Now they’re working to save her life, and doing the best they can. I appreciate them very much.