Wednesday, November 24, 2010

Glimmer of Hope

The last 24 hours have been a challenge. Around 4:00 am, Mom sort of "woke up" for a bit...she was agitated, wanted something, and could not speak. It dawned on us that she can we cycled through the alphabet and she nodded at the letters to spell what she wanted to say. I have to say, I thought she was trying to communicate something monumental...that she loved us, that she didn't want the treatments to continue...something. Turns out, she spelled "H-O-T." Dad, my brother and I actually laughed when we realized what she was saying. We did our best to help cool her down, and she went back to resting.

Since Mom was looking stable and alert, and since we were told she would not get a room until the next afternoon, we decided to work out "shifts" so we could get some rest. Dad wanted to stay, and I desperately needed to get home and pump because I was so uncomfortable, so my brother and I left around 5:00 am.

We woke up around 8:15, and I think it took us another hour to get out the door (the phone was ringing, we had the kids here, I had to gather a few things). My brother and I were back at the hospital by 9:30, DH joined us, and Mom was still in the ER. She was very sleepy, and not as interactive as when we left at 5:00 am.

Mom was trying to communicate again...this time, she wanted a pen. We tried giving her one to write, but she was not yet able to hold a pen and write (since it is her right side affected). She was clearly frustrated. She finally was able to tell me that she had a headache and was nauseated, and it dawned on me that she had not yet had any of her steroids since 11:00 the prior evening. I also realized she had missed her morning dosage of her anti-seizure medication. I went out to talk to her nurse...and she said "oh, those medications were written up for oral administration, and since she can't swallow I didn't give them to her."

Naturally, I went ballistic. I was infuriated that they would withhold medication from a woman with brain cancer, especially, the medication that was keeping her safe and pain-free. They initially ignored me, but I was quite insistent...and eventually had the nurse manager, a patient advocate and a few others scurrying around to correct the problem. I made it quite clear that this was a huge error that was tantamount to negligence, and that they were causing HARM. My mother keeps saying that the medical oath includes the phrase "First do no harm" and yet all of these medical professionals continually seem to do harm by ignoring and being careless.

Once they gave Mom her meds, I felt much better. Somewhere in the middle of the hoopla, DH took Dad home to rest, and my brother and I stayed with Mom. One of the fellows from the stroke team came by...and he was terrible. He barely spoke two words of English, and he was unable to answer any of our questions. Luckily, I have a friend who is a neurologist, and DH faxed her Mom's MRI scan, and she called back with more specific information.

As we have learned, Mom's stroke was relatively small, but it is in an area of the brain called the pontine region. The pontine region is sort of the "traffic cop" for the movement on the right side, and for the facial/throat muscles that are needed for speaking and swallowing. The language center is unaffected, so right now Mom can understand, she knows what she wants to say, but she is unable to make her muscles cooperate to allow her to speak. In patients without brain cancer, these types of strokes are usually highly responsive to rehab. Unfortunately, because of all my mother has been through, we just cannot predict how she will respond.

Ironically, the "best" news of the MRI was my mother's tumor. It really has shrunk significantly and the swelling has dramatically decreased. The midline shift has greatly reduced, and the ventricle had re-inflated. This is much more than we were told to expect only one month post surgery and radiation, so from a cancer perspective, Mom is in good shape right now.

She will need speech, physical therapy and occupational therapy, but the most important component will likely be speech. We need to teach her how to re-route the control function, and then she should be able to speak and swallow again. We will know in another day or two how quickly she is recovering. She will need to do several swallow tests over the next few days, and they may need to start giving her some nutrition through a feeding tube. That is definitely a touchy situation...we really hate the idea of a feeding tube, but our expectation right now is that the tube is just a temporary solution until we can get Mom swallowing again on her own. It may be possible to avoid the tube altogether if Mom can pass her swallow test.

It was after 1:00 pm before we finally had a room. My brother and I had complained about the earlier visit from the stroke fellow, and the stroke nurse coordinator was there to meet with us. She was lovely, and we requested that we see a different doctor with better patient communication skills, and she told us the doctor would be by in the afternoon.

As Mom was transferred to her room, SIL arrived. She had dropped the girls off at our house to play with Micah while she came for a visit. She was there for a few hours before heading home (and unfortunately got caught in terrible rush hour traffic). Mom is actually in a great room, and her nurses are quite kind. After we got our room, the visitors started to arrive. Mom was aware that everyone was there, but she was very sleepy. She was still communicating that she was uncomfortable, and we tried over and over again to adjust her position. Her left leg and arm are actually moving quite well - somehow, since she is unable to use the right due to the stroke, she seems to have re-discovered her left side again.

As promised, the neurologist came by in the afternoon. He did another full background and an examination of Mom, and he was quite kind with her and he took a long time to talk to us. My father had just returned to the hospital, so we were all there. While he was reluctant to promise anything, he did give us better information. He agreed with my friend's assessment that these strokes are usually responsive to rehab, but we just have to see what is happening with my Mom. He talked to us about the treatment plan - they do expect Mom to be in the hospital until next week sometime. He will be sending a speech language pathologist in and the rehab doctor for their evaluations and recommendations, too. Our first goal is to work on the swallowing and try to get her eating again, hopefully on her own. We do not yet know if Mom will go to an acute rehab or a sub-acute rehab - it all depends on how awake she is and able to cooperate with treatment. He even gave us hope that perhaps she could walk with a walker again...especially since she now is able to use her left arm and leg.

After seeing the neurologist, we also got a call from Mom's oncologist. He was very sorry to hear about Mom, and he said that he had looked at the scans and the results, and he thought the whole thing was "weird." I gave him my version of the story (again), and he kept asking me if Mom had a drop in blood pressure. According to him, this stroke was not caused by the cancer. It is in a different, unrelated and unconnected region. He also said there is no evidence of a clot or a bleed, and while most doctors presume it was caused by a clot, he thinks that would be unlikely given Mom's low platelet count. He feels that Mom's stroke was caused by a lack of profusion (blood flow) to her brain, and he thinks that Mom either had an allergic reaction to the medication or to the platelets (platelet transfusions can cause reactions, which is why they give benadryl along with the platelets). He thinks that while Mom was having the reaction, Mom's blood pressure dropped dramatically and caused the stroke. He also said it could turn out to be "good news" in that it may be more of an ischemic attack than a true stroke, which would mean that the effects could be more temporary and resolve a bit faster. I guess we'll just have to see how this unfolds.

Mom's friend drove me home a little after 6, and my brother left at the same time. I came home, dealt with dinner and bed for the children...and then I fell asleep on the couch. My father came home around 11, and he went to sleep. My mother is by herself at the hospital. We decided not to get an aide because the care ratio there is good, and frankly, there isn't much an aide can/will do for her. I think Mom would be more frustrated that there is someone there with whom she cannot communicate. I hope they check on her frequently throughout the night, and I hope that she is able to communicate what she needs. We'll all be headed back in the morning, and we'll see how the night went.

I will update again as soon as I can. I did read the blog messages yesterday and some of the blog - Mom is still able to listen, so your words of encouragement will help a lot right now.

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