Nothing much new yesterday except that mom had her last dose of Amikacin (which we expected) and she was taken off one of the anti-seizure medications called Dilantin. She had some Physical Therapy where Jeff and Garth came in and moved her legs and arms. And she still had a low grade fever through the day. Dr. Solomon mentioned that he might take her for a brain xray if she didn't respond by opening her eyes in the next couple of days.
Today...
Dr. Solomon (Pulmologist) came in again and said that he would be ordering a lot of labs (blood, urine, fecal and sputum) and also a CT scan to see if they can figure out the source of her fevers. The most common source would be an infection (and her white blood counts are up which kind of goes with that). However, they've been treating her with so many antibiotics for so long, it's hard to tell. He mentioned that he would hope that it's a stomach type issue rather than something more serious like bleeding in her brain or meningitis, and I just kind of had to catch my breath. It's hard to know all the things it could be and it's even harder to think about them once they mention it. (He did say that it was an extremely low chance of meningitis and that she was not showing other common symptoms of it). Another source would be blood clots (and he mentioned she had one in her arm). The third source, cancer. Have you ever heard of a cancer fever? I've heard the term quite a bit lately and I don't like it.
When he mentioned the blood clot, I asked him if he was talking about the superficial clot they had found back when she was still at Swedish (because that was the third time I had heard it referred to in the couple of days). He double checked and said that this was not a superficial clot, it was a new one that was found on the 12th. The cause is likely the PICC line (one of them told me it was common) and it's being treated. He didn't seem overly concerned about that, although that hasn't given me much comfort.
Lastly, he said he would like to have a family meeting within the next couple of days to get on the same page with all the docs and to discuss the next steps. I've had a hard time catching my breath over that one too...
Dr. Waddell (Hospitalist) talked to us, basically echoing what Dr. Solomon had said - except while he said he might put her on a broader antibiotic, she said she would like to take mom off of the rest of the antibiotics she's currently taking and try to see how that goes. Reasons given are that antibiotics can lose their effectiveness when given for such a long period of time and that they can cause false results on lab tests. I asked how this would affect her pneumonia (the last antibiotic she is on was ordered for that) and she said it might be that her pneumonia is not as bad as they think. What??
Dr. Yarnell (Neurologist) - is an ass. I'm glad he's supposed to be so great and amazing and a genius and all that, but he has the worst bedside manner. No people skills. And, he's never done anything more than come and look at my mom, ask us and the nurses questions, to which he never seems to listen to the answer of, and then say "She had a seizure" or today "I think you've done all you can". Serioulsy? WTF!!!!
I just looked at him and I bet I looked angry, because at least this time he asked me if I had any questions. And I said "Yes. My question is why do her other doctors say that it can take a couple of days for the Propofol to wear off. And, they've also said it's good that she is moving and showing in expression when she feels pain, and at least twitches her eyes when we talk to her?" And then he says "Well, she is moving both of her legs and her left arm. And she is doing good on CPAP. The first thing we need to do is get her off the vent." Then I asked him about Dr. Solomon mentioning ordering a brain scan to check for bleeding and he says "I don't know anything about that." Well, can you find it the fuck out please?!?! I mean, I may be wrong, but he's neurology. Shouldn't he be checking on her brain!!!
<<<Sigh>>> Sorry about that. I've been dreading writing this because I just don't know how to say what I've heard, what's going on, and to separate it from how I feel - because I'm pretty pissed off. And I'm scared too...
The thing is, I don't need false hope. If the doctor told me that there was no way she was coming back to us... No chance of recognition... Then I would process that. It would be the hardest thing in the world, but I would. BUT THEY HAVEN'T SAID THAT! They've been giving us hope and saying it could go either way, but one of those potential ways is her getting better. And if there is any chance for her to get better, we all (dad and brothers & sisters) agree that that is what she would want. What she would fight for.
Anyway, just a little bit after that, Jeff, one of her Physical Therapists came in and he asked me how I was doing. But he didn't ask it in a way where I could just say "I'm okay" and I don't know if I would have anyway. I said "I'm kind of frustrated" and I mentioned my meeting with Dr. Yarnell.
Wow. Jeff was amazing. (And I should say, he is not the first to understand my frustration at the lack of Dr. Yarnell's manner.) He talked about working with stroke patients and having seen them come back from places as bad or worse than where my mom is right now. He talked to me while I helped him with her therapy and he sat her on the side of her bed. As he held her up from the back, he asked me to sit on a chair right in front of her and talk to her. She opened her eyes. Now mom's eyes are not in the best shape and they've been closed for a long time, so they're swollen. It was more of a squint, but they were open and he said - "Now, if Dr. Yarnell would have done something like this, he could have seen. She needs stimulation." He was so caring and talked to me about real-scenarios and gave me hope.
Well, I didn't hear when the meeting will be but I suspect probably tomorrow. I'm guessing some labs will come back too.
Please pray for my mom.
Thank you!
xox,
Tommy
Today...
Dr. Solomon (Pulmologist) came in again and said that he would be ordering a lot of labs (blood, urine, fecal and sputum) and also a CT scan to see if they can figure out the source of her fevers. The most common source would be an infection (and her white blood counts are up which kind of goes with that). However, they've been treating her with so many antibiotics for so long, it's hard to tell. He mentioned that he would hope that it's a stomach type issue rather than something more serious like bleeding in her brain or meningitis, and I just kind of had to catch my breath. It's hard to know all the things it could be and it's even harder to think about them once they mention it. (He did say that it was an extremely low chance of meningitis and that she was not showing other common symptoms of it). Another source would be blood clots (and he mentioned she had one in her arm). The third source, cancer. Have you ever heard of a cancer fever? I've heard the term quite a bit lately and I don't like it.
When he mentioned the blood clot, I asked him if he was talking about the superficial clot they had found back when she was still at Swedish (because that was the third time I had heard it referred to in the couple of days). He double checked and said that this was not a superficial clot, it was a new one that was found on the 12th. The cause is likely the PICC line (one of them told me it was common) and it's being treated. He didn't seem overly concerned about that, although that hasn't given me much comfort.
Lastly, he said he would like to have a family meeting within the next couple of days to get on the same page with all the docs and to discuss the next steps. I've had a hard time catching my breath over that one too...
Dr. Waddell (Hospitalist) talked to us, basically echoing what Dr. Solomon had said - except while he said he might put her on a broader antibiotic, she said she would like to take mom off of the rest of the antibiotics she's currently taking and try to see how that goes. Reasons given are that antibiotics can lose their effectiveness when given for such a long period of time and that they can cause false results on lab tests. I asked how this would affect her pneumonia (the last antibiotic she is on was ordered for that) and she said it might be that her pneumonia is not as bad as they think. What??
Dr. Yarnell (Neurologist) - is an ass. I'm glad he's supposed to be so great and amazing and a genius and all that, but he has the worst bedside manner. No people skills. And, he's never done anything more than come and look at my mom, ask us and the nurses questions, to which he never seems to listen to the answer of, and then say "She had a seizure" or today "I think you've done all you can". Serioulsy? WTF!!!!
I just looked at him and I bet I looked angry, because at least this time he asked me if I had any questions. And I said "Yes. My question is why do her other doctors say that it can take a couple of days for the Propofol to wear off. And, they've also said it's good that she is moving and showing in expression when she feels pain, and at least twitches her eyes when we talk to her?" And then he says "Well, she is moving both of her legs and her left arm. And she is doing good on CPAP. The first thing we need to do is get her off the vent." Then I asked him about Dr. Solomon mentioning ordering a brain scan to check for bleeding and he says "I don't know anything about that." Well, can you find it the fuck out please?!?! I mean, I may be wrong, but he's neurology. Shouldn't he be checking on her brain!!!
<<<Sigh>>> Sorry about that. I've been dreading writing this because I just don't know how to say what I've heard, what's going on, and to separate it from how I feel - because I'm pretty pissed off. And I'm scared too...
The thing is, I don't need false hope. If the doctor told me that there was no way she was coming back to us... No chance of recognition... Then I would process that. It would be the hardest thing in the world, but I would. BUT THEY HAVEN'T SAID THAT! They've been giving us hope and saying it could go either way, but one of those potential ways is her getting better. And if there is any chance for her to get better, we all (dad and brothers & sisters) agree that that is what she would want. What she would fight for.
Anyway, just a little bit after that, Jeff, one of her Physical Therapists came in and he asked me how I was doing. But he didn't ask it in a way where I could just say "I'm okay" and I don't know if I would have anyway. I said "I'm kind of frustrated" and I mentioned my meeting with Dr. Yarnell.
Wow. Jeff was amazing. (And I should say, he is not the first to understand my frustration at the lack of Dr. Yarnell's manner.) He talked about working with stroke patients and having seen them come back from places as bad or worse than where my mom is right now. He talked to me while I helped him with her therapy and he sat her on the side of her bed. As he held her up from the back, he asked me to sit on a chair right in front of her and talk to her. She opened her eyes. Now mom's eyes are not in the best shape and they've been closed for a long time, so they're swollen. It was more of a squint, but they were open and he said - "Now, if Dr. Yarnell would have done something like this, he could have seen. She needs stimulation." He was so caring and talked to me about real-scenarios and gave me hope.
Well, I didn't hear when the meeting will be but I suspect probably tomorrow. I'm guessing some labs will come back too.
Please pray for my mom.
Thank you!
xox,
Tommy
Wow Tommy, I am speechless with tears rolling down my cheeks. Hold your head up Girl. I can feel your frustration and hurt. Try and keep an open mind, heart and spirit. It's difficult for the doctors to provide any definite answers...Spend a little time in the chapel with God for comfort and answers. Get a radio in there, put the news on or music whatever you knows will stimulate your mom's senses and brain..Love you and praying for your mama Deb
ReplyDelete