Aug 10, 2012 - 3:10 am
On Wednesday David's home health care nurse said David's left lung sounded terrible and his oxygen saturation level was in the 80s so we went to ER. They did a chest X-ray and admitted him with aspiration pneumonia. Said it can get bad fast. They also did a CT of his brain and at first the nurse read the report and told us no changes and it looked good. Then the ER dr said it looked terrible and that there were TWO possible new lesions. They sent us upstairs to the neuro trauma floor. I told them not to tell David any test results until we had everything sorted out because I didn't want David to have to deal with all the crazy conflicting reports. At first they were saying that they had to tell David stuff but then as things progressed they saw what I was talking about---the INSANITY with one dr saying one thing, another dr saying something entirely different. It's been unbelievable. And then when we got upstairs the admitting dr said he wasn't sure it was pneumonia but they would treat it like it was just in case.
I met with the radiologist who now said MRI showed tumors stable or maybe even improved. No new tumors. What the heck? So I had them send everything to our expert NO at OHSU.. Our NO said tumors look worse and David is having brain bleeds and small strokes. Also said David absolutely does have aspiration pnuemonia. He said get palliative care and hospice. And---get this---maybe David should not take antibiotics and maybe this should be his time for his "exit." NO WAY!!! It's one thing to choose not to take chemo which is so deadly and makes you so sick, and it's a totally different thing to not take a benign antibiotic for pneumonia. I am NOT happy that he would suggest not taking an antibiotic.
Our palliative care dr disagrees with our NO. Because the MRI looks better or at least stable, she thinks we should get a second opinion from an oncologist here in Salem. If he thinks chemo is not a viable option, then ok. But at least we have another opinion besides the one from our NO.
My family is in turmoil. They are furious that our NO suggested no antibiotic. They think our NO is done with David since he's not doing the BBBD and they think he wants to cut David loose and focus on his BBBD patients who are doing well. I refuse to believe that our NO could be so evil. My family also does not want David to do more chemo. They are afraid it will kill him. I don't know what to do.
David has a bacterial infection in his bloodstream again. He is a high risk for bleeding. He has active blood clots in his groin, maybe in his lung. They can't treat blood clots with more anticoagulants or blood thinners because he is so high risk for bleeding. I don't know for sure if David had strokes and/or bleeding in his brain. I suspect that he did/does. He had a seizure tonight. I am frightened because I feel like things are tumbling downhill.
On the plus side... I wanted to surround David with friends and family who love him so I put the word out, and he had lots and lots of visitors today. It really perked him up and helped a lot. He even laughed out loud and smiled several times today. It's been a long time since he's smiled or laughed.
I've been talking to doctors, trying to sort thru information, trying to understand the discrepancies and differences in the doctors' opinions. It's been totally crazy but I am fighting fiercely and I am not tired at all. I have a lot of fight left. I feel like we are being slowly backed into a corner by the circumstances and events but I'm still swinging. David is worn out and sick and doesn't really have a grip on what is going on. I'm so glad that I insisted on the drs relaying all info to me instead of subjecting David to all these terrible emotional ups and downs. The stress would have been so terribly hard on him.
So tomorrow will be a day of decisions and hard choices. I think I want to suggest that we talk to a new oncologist and see if he thinks David should do more chemo or not, before we even talk to David about more chemo. I don't want to make David decide whether or not to do more chemo if its not even an option for him. I'm frightened to cut our ties to OHSU and our NO. I hope we make the right choices.
I'm glad I can vent here and write out my feelings and fears. It helps me sort out my feelings and get a grip on what I need to do.
Love and blessings,