Wednesday, September 29, 2010


Drama...I think I've had more than enough drama to fill a lifetime! Overall, today was a good day. A LONG day, but a good day. After some difficulty putting Maya to bed last night (she wanted to stay awake until 9:45), all three of the children slept fairly well. Paige did not wake up when I tiptoed into bed at 3:45, but she scared me a few times over night. I am starting to think she might be a foreign national...she utters some sort of a slavic language in her sleep. She did startle herself awake momentarily after kicking me around 4:15, but she gave me a sly smile and went right back to sleep.

Maya woke us both up around 7:20 again, and I bribed Paige with television. We played Hannah Montana again (yes, I swore I'd never let her watch that again, but it was easier than arguing with her at 7:20 am) and an episode of Handy Manny before she announced she was too bored to stay in bed another moment.

At 8:30, I left Maya in bed and Paige and I came downstairs. I made Paige pancakes (again) and we sent DH upstairs to start getting ready. Right at 9:00, Micah woke up, and I started scurrying to get him ready for preschool. The babysitter arrived and helped us get everyone ready, and DH finally came downstairs with Maya and left for preschool with Micah. At 10:00, I left Maya with the babysitter and Paige and I walked a few blocks over to tour a rental house around the corner. It was definitely beautiful, but it was a tad bit smaller than I expected.

Paige and I made it back to the house quickly, and we had a little time to relax before Micah and DH came home. We called and spoke to SIL and learned that Peyton would probably be released from the hospital today. We actually put Paige on the phone with Peyton, and they were adorable talking to each other. My father arrived a few minutes later, and we left for the hospital with Maya. Our trip was fairly easy father napped a bit while I drove. We arrived at 12:45, just in time to help my mother with lunch.

Upon our arrival, we got our first bit of good news for the mother had been accepted to to our first choice facility, and insurance had agreed to pick up the entire tab! This news, however, was immediately followed by the first bit of drama...radiation oncology was running at least 2 hours behind and the rehab facility was uncertain if they could get my mother's chemotherapy drug by tomorrow. We spent the afternoon waiting to learn whether we would be transported today or tomorrow. My mother's stomach seemed to be better, and we were able to pack up the room and relax for a little while. My mom's favorite nurse was assigned to my mother again today, and she was a huge comfort all day as we waited and waited to learn our fate.

Around 3:45, my brother, Paige, Micah and DH all showed up in my mother's room together for the official Paige swap. At some point this afternoon, Peyton was released from the hospital, so my brother came to the hospital to pick up Paige for her first ballet class and to bring her back home. Paige had a quick little visit with my mother until hospital transport arrived. We all walked with my mom to radiation, but Paige and my brother said goodbye to us along the way. Micah loved having Paige she left, he started to wave to her and say "bye bye, P."

During the radiation appointment, we had a brief meeting with my mother's doctors. They wanted an update about how she is doing, and we discussed how things would change moving forward. They told us we would need to keep a much closer eye on her now and give them updates if we notice any significant changes.

When we returned to my mom's room, it was nearly 5:00. I sent DH and Micah home because Micah was getting restless and it was difficult to juggle his needs with everything else happening. Micah said "night night, mimi" before he left, and he blew my mom a kiss. That kid just keeps getting cuter! We heard rumblings about Mom's release, but were surprised that they actually planned to discharge her so late at night.

We finally received confirmation that her ambulance transport would be coming around 6:00. We were disappointed because it is difficult to transfer into a new facility at night, but we were packed and ready to go. My mother's dinner arrived at 5:30, and the ambulance drivers arrived shortly thereafter. It took a few minutes to get everything in order, and much of the staff lined up to say their goodbyes.

My father loaded up the car with my mom's things, and I strapped Maya into the back seat. We decided that my father would travel in the ambulance with my mother and I would follow in my father's car. It was 6:30 before we finally got on the road to the rehab facility.

There was traffic on our way, but we arrived at our exit in decent time. As we were pulling off the exit, we had to swerve to miss a parked car and come to an abrupt stop. More drama! We looked around and noticed that there were police pulling in everywhere and blocking off the exit ramp while people from search and rescue were frantically running and looking over the edge of the exit ramp into the ravine below. It looked as if someone had jumped off the edge! We later learned that there had been a hit and run accident and the driver ran into the ravine and abandoned his car. The search and rescue team was conducting an all-out manhunt for the driver!

Unbelievable, right? We sat there for a long time, with traffic backing up onto the highway. Eventually the ambulance driver got permission for us to drive down the exit ramp and get back on the highway. We slowly navigated the complicated reversal, merged onto the highway and took it to the next exit. The driver took a complicated route down the backroads, and we arrived back to our goal location...only to find that it was still shut down. It took a while, but we successfully navigated the closure and made it to the rehab facility around 7:30.

Settling in was a bit complicated. Her nurse tonight was a man, and he seemed quite kind. My mother is in a shared room, and we quickly unpacked her things. Naturally, she needed to use the bathroom, but it took the staff a while to figure out if they could safely get her on a bedside commode. There was some confusion about her medications, and we had to sit down with the physician's assistant and the nurses to talk them through everything. I swear they kept looking at me like I had three heads. The physician's assistant was particularly worried about my mother's insulin shots, and they seemed very concerned about maintaining her on those levels. They suggested that we request a GI consult and an Endocrinology consult in the morning. Once again, I was relieved that we were in a facility that made this possible. We were told that their wound care team would visit mom in the morning, and that she would be evaluated by their therapy team as well.

While we were there, we had to submit my mother's power of attorney and advance health care directive. They asked us if we wanted to sign a "Do Not Resuscitate" form for my mother. We declined the DNR and marked her as "full code." The physician's assistant then went in to discuss the decision with my mother, and she agreed.

It was after 10:00 before we finally felt that things were settled and we could leave. We said good night to my mother and headed out the door. As we were exiting the parking lot, we stopped at a light. I noticed a few parked cars about 30 feet down on the right, and I glanced over, wondering if there was an accident. I saw some men yank something out of the car, and then there seemed to be a bit of commotion. As I looked closer, I realized that it was a man they had yanked out of a car, and there were several young men kicking and punching him. Yet more drama!!

My father and I were watching to see if there was anyone helping, and we realized all the cars were just driving past. I decided I would call the police, and I dialed 911. By the time she took my information and I reported the incident, the men had gotten back into the three cars and started to drive away. For a while, the man was rolling around on the ground. We were a bit afraid to go over and help him ourselves because everything was happening so fast. As I started to worry that we should go help the man out of the street, he stood up. I was on the phone with 911 the entire time, reporting what I saw. The man started to wobble a bit, and then he slowly started walking towards the emergency room. When our light finally turned green, we tried to follow him and see if he was okay, but he had disappeared. I hope he was okay and that it looked worse than it was.

After calling 911, we finally started our trip home. Maya screamed the entire way back and my father managed to take another short nap. Me? I cried most of the way home, too. I am frustrated...I am worried about whether this facility will be able to handle things, and I am worried that as we finally make some headway with my mother's intestinal issues, the change of location will cause us to lose some ground. I am concerned about how the physician's assistant changed her insulin order (without a doctor signing off on the change) and I think it will set off her sugar levels as well. I truly hate seeing my mother this...helpless. I think that might be the worst part - seeing my strong, independent mother so dependent on both our choices and the level of care provided in these facilities. The care ratio at the sub-acute facility just isn't the same as she was getting at the hospital. I don't want her to have to endure one more minute of misery or fear if there is anything I can do to prevent that. Most of all, I hate leaving her at night. I really am ready to finish up this radiation so that we can have her home with us every night. I will feel better knowing she is safe in our house and not afraid.

I am also concerned about the "full code" they had us sign in addition to her advanced health care directive. One of the things they had us check was full respiratory code, which means that in a respiratory distress, they will take all measures to resuscitate her, including use of a ventilator. My concern is that my mother would not want to be on a ventilator unless it was just being used temporarily to get her through an episode. Her advance health care directive explains the circumstances under which a ventilator could be used, but the hospital form was a simple "yes" or "no," and life just isn't that simple. I think that we will need to discuss this issue again with her medical professionals tomorrow, and we may need to adjust the forms so that they understand the protocol.

I tried to discuss this with my father on the way home, but he wouldn't talk to me. I think he just couldn't process any more emotionally, but it left me feeling a bit...alone. We have so many tough choices that we are making, and so often I feel like I am the only one thinking through and making the decisions. My mother and I always worked as a team during the tough times, particularly when my grandmother was dying...we discussed options, talked about how each of the choices felt, reviewed the pros and cons, and we each expressed our opinions. Ultimately, when the decision was my mother's to make, she made the final call and asked me to support her in the choice. It was always easy because I think we were of the same mind.

My father doesn't work the same way as my mother. I know this, but I miss working in tandem with my mother. My father hates to think about these tough choices, and it starts to overwhelm him. I can never get him to discuss the options with me...he just says yes to whichever option I present first and quickly changes the topic or stops responding to me. Usually, he says "that is fine" before I even explain the option. Sometimes, I think if I told him we were planning to swing my mother from the rooftop as her treatment plan, he would say "that is fine." He just wants someone to tell him what to do, he prefers to trust the professionals and not ask questions, and he often defers to me to make those calls. Sometimes, I wonder if I'm pushing too hard and I wonder if there is a better way to interact with my father. I know he feels a bit lost and overwhelmed right now, too, but it just always seems that he'd rather not think about it and I'd rather talk about it. I've also tried talking to my brother, but these issues are just...too much for him to face right now, and I understand that. My brother needs it to be someone else's decision, and I know he also trusts what we are doing.

I guess I'm finding it hard to make those choices without my mom as my sounding board...and without the feedback from my father that someone else shares my perspective. Sometimes, I am so certain we are doing the right things and exactly as my mother would want, but then other times I second guess myself and wonder if I'm really sufficiently clear-headed to make all these choices, or if my mother would be making the same choices. I have tried to talk through the options with her, but she is quick to say that she trusts me and she is okay with whatever I suggest. I also think that discussing the choices is too much for her right now, too. I wish I was certain that my father felt comfortable with all of our choices. I do know that once we settled in to the rehab facility tonight and he got a better sense of the staffing and the layout, he said he felt that it really was the better option, and that he was glad that we had pushed to make it happen. I am relieved about that.

So, thinking about things like the DNR really struck home again. My father and I did not get back to my house until after 11, and he never called (or emailed) to tell me he got home safely. Maya was a big crank, and it was midnight before she finally went down for the night. It was a long day and I'm exhausted. I hope my mother is fast asleep and doing well. I hope that my father is getting some sleep and can manage the drive to the rehab facility in the morning. I am thrilled that Peyton is out of the hospital, too.

What I'd really like to focus on is clearing off the DVR...there are dozens of shows I've been recording all week (and losing off the DVR because I never have time to watch anything other than Sesame Street and Word World with Micah). I wish my biggest decision tonight was whether to watch the season premiere of Brothers and Sisters or veg out to a little Big Bang Theory. Tomorrow, I am hoping to take Micah to his music class and possibly get him a haircut. I will probably meet my parents at the hospital for mom's radiation treatment, then travel back to the rehab facility for the afternoon/evening shift.

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