Thursday, September 30, 2010


Crap. Literally, crap. I'm so sick of crap I cannot see straight. My mother is once again in agony over...crap. It is 3:00 in the morning, and my father is now driving up to the hospital to sit with my mother while the staff there tries to figure out what to do for my mother's pain and discomfort. I'm so angry that they cannot get this problem resolved and that when I explained to them last night and today about not skipping any of her medication that they ignored me.

My father called me about 15 minutes ago to tell me that her nurse, Richard, had called and that mom was in agony. Dad asked me to give Richard a call on his cell phone to go over what she needs. Since my mother was in pain earlier today when we visited, I was sure what was happening with her. I called Richard and explained to him what medications to give her. Immediately, he copped an attitude with me, telling me he'd already given her a bunch of medications. He told me that she wasn't having the pain I mentioned, so he had been pumping her full of stool softeners (great...she might end up with a different type of problem tomorrow). I explained to him that all day she has been having pain from irritation, and what she needed was a specific cream that was on order and Tylenol. I could hear the pause as he realized he had not given her that medication (and she always ends up in pain when the miss a dosage). He said to me he knew what he was doing, and he'd given her that stuff already. I was certain that he had forgotten those medications (since he thought she was cramping and they haven't gotten the orders for the different medications written properly yet).

I tried my best to turn Richard from an enemy into an ally. He was frustrated because he was unable to help other patients because my mom was taking up so much of his time. I explained to him that the transfer and the missed medications likely set this off, and I understood the frustration because we have been dealing with it for several weeks now. I again reminded him of our conversation last night when she arrived at the rehab facility , and said that while he thought I was being overprotective, I was afraid of this happening again. He said he understood now, that in all his years he had never seen anyone in so much pain, and he was now a believer that my mother had a serious problem. He also requested a GI consult and a scan for tomorrow, so perhaps they will now take my mother's problem seriously.

I said I would be happy to talk to my mother and see if I could calm her down over the phone if he would help her answer her cell phone. Instead, he walked down to her room and called me back from her cell phone. It was on speaker, and I asked her a few questions about what she was feeling. As I suspected, she was not feeling backed up as Richard thought, but she was experiencing pain and irritation. I asked her if Richard had given her the medications that helped (Tylenol and a special pain suppository) and she said no, he had not. It was probably not a good idea to piss off Richard that way, but I knew if he heard our conversation I could get him to administer the medications she needed. I told her to request those two medications, and she did. It took Richard another 20-30 minutes before he came back with the medications (and I think he was grumbling because I hit the nail on the head) and gave the medications to her. I heard her put her earphones in and I told her to call back if she needed me. I guess we will see if this works.

Today has been...awful. And now it is pouring rain outside, and I'm worried about my father driving by himself in the middle of the night. I probably should have been the one to go up since I'm better with nighttime driving. I've called him a few times to check on him because I hate when he drives alone at night - he tends to get sleepy on the road during the day, so driving at this hour truly worries me.

I thought things were going smoothly when I woke up this morning. Maya and Micah both slept until after 8:15. I brought Maya into bed to nurse first, and Micah woke up shortly thereafter. DH brought Micah downstairs while I finished nursing Maya. Megan arrived at 9:00 and helped us with feeding and dressing the children.

I spoke to my father and he was driving up to see my mother. I told him that I was concerned that they had not given mom any of her medications for both her bowel issues and her steroid, so I asked him to check and make sure about both of those medications when he arrived. At 9:45, Micah and I left for our gym class. It was the first time this semester I was able to attend a class with him, and I think we both needed some bonding time. Micah was a bit reticent to join the class at first - it took him 10 minutes to warm up and participate. But when they brought out the blocks and the obstacle course, he was ready to play! Much to my surprise, he was playing well with the other children in the class. We ended class with two songs..."Tick tock cuckoo clock" and "Goodbye friends." During both songs, Micah did the hand gestures and even sang a few of the words! He had a HUGE grin on his face while we sang.

After class, I was able to fit Micah in for a haircut (the woman is wonderful...she has a fire engine seat and a dvd player with Elmo, so what more could Micah want from a haircut?) and he was more upset when the haircut ended that he had to stop watching Elmo. While he was getting his hair done, I signed the contract for Micah's second birthday party. Yes, it is a bit early to be planning for a December party, but we have a big discount that we needed to use that expires on September 30, and we decided it would be a fun place for Micah's birthday party. I sure hope we are able to go ahead with our plans in December.

After we finished at class, Micah and I ran across the get a cupcake! For those of you who don't already know it, DH and I are a little obsessed. We think these cupcakes are delicious, and we love some of their flavors in particular. Perhaps our favorite thing about this place is their free flavor of the day. Yes, free. If you become a "fan" of their Facebook page, every morning they post their free flavor of the day. If you go to the store and request it, the cupcake is yours (while supplies last)! If you can get their before 11:30, they usually still have free cupcakes. Today's flavor was milk chocolate squared, and I was able to secure 2 cupcakes today (it is only 1 per person, but they counted Micah, too). By the was delicious, too!

After getting our cupcakes, Micah and I came home. Maya was napping, and I waited for her to wake up. I spent a bit more time with Micah, and spoke to my father. He told me that when he arrived at the facility, my mother had a headache. He checked at the desk, and he learned that I was right - they had failed to give mom her nighttime AND her morning dosage of steroids, and she had a headache because of brain swelling. He made sure they brought her the steroids, and we waited. I nursed Maya around 12 and talked to my father several more times, and mom was doing okay, but she was complaining that her stomach was bothering her again. I asked Dad to request a GI consult for her and an endocrinology consult (I'm not happy with how they changed her diabetes medications) and I suggested that he try to talk to the physician when he came to see mom.

They gave her the chemo medications on time (probably thanks to my father's presence). Maya and I left for the hospital around 12:30, and I managed to arrive at the radiation oncology appointment before my parents got there. They arrived exactly at 1:45, and my mother was cramping and in pain. We had her radiation nurse assist her in the bathroom, and she immediately started feeling better. They took her for radiation right away, and we had a brief meeting with the doctor (I asked them about her missed dosage of steroids). Because my mother's headache had resolved, they decided not to give her a supplemental dosage of steroids. Right at 2:15, my mother was able to head back out to meet the transport, and I stayed behind for another 15 minutes to nurse Maya.

I arrived at the rehab facility a little before 3:00. When I got up to my mom's room, my parents were not back. I called my father to figure out where they were (and he answered and hung up on me telling me he was with mom). I called back to find out WHERE he was with mom - I thought perhaps they were somewhere in the building and I could get to them. He said he was in the ambulance with her and she was in excruciating pain again (I guess they were so late because she had to make another bathroom pit stop on the way out of the hospital). When they got to the room, my mother was crying. It took us a while to get the staff to transfer her to the bed, and even longer to get her nurse there with her medications.

Unfortunately, they had not been giving her any of her medications to manage her bowel issues. I was livid - there were orders from the hospital about what to give, but apparently the physician's assistant did not translate the orders appropriately. I am so frustrated that every time we are dealing with someone new, they seem to think we are kidding about my mother's bowel problems. Pain management and consistency has been the key, and whenever they fall behind on the medications, things go to hell in a handbasket fast. It is also hard for the nurses to understand the urgency of the situation when my mother complains about pain. I finally had to throw a fit to get the nurse to come in and explained to her what medications my mother needed. When she finally realized my mother was crying and saw her writhing in pain, she moved a bit faster. It took another 20-30 minutes before she requested all of the meds from the pharmacy and had them delivered and administered. My father stepped out for a bit to meet with the woman from admissions and fill out some paperwork. When he returned, my mom was feeling much better, and my father left for the day.

I sat down with my mother's nurse, Camille, and I went over all of the medications/issues with her. I apologized for how we first met, asked if we could start fresh now that things were calm. I re-introduced myself, and she got a copy of my mother's medications. I gave Camille the background on my mother's bowel issues, and explained that when there is any divergence from the protocol, my mother ends up in excruciating pain, and it becomes an emergency. I asked her if she could help make sure that the orders were all entered properly into the system so that everyone knows how to stay on top of things and prevent any more emergencies. She was quite kind, and we identified what other medications were not being given, and she did what she needed to get them on order from the pharmacy. We also discussed my concerns over Mom's insulin dosage and I gave her the sheet from the hospital.

Camille tried to get everything straightened out, and she was extremely responsive. My brother arrived in the afternoon, and the two of us sat with mom. The speech language pathologist came by to do her evaluation, and it seemed to go well. My mother was very subdued most of the afternoon - wanting to sleep after her exhausting trip to the hospital and back. I also think the brain swelling from earlier in the day had her exhausted.

My mom's dinner arrived around 5:15, and my brother and I helped her eat. The doctor finally came by, and we talked about my concerns. I asked him to make sure the orders were written properly for my mother's medications, and we talked about the insulin discrepancy. He did not feel comfortable following the orders from the hospital, but he realized her blood sugar is back out of control again. I asked him to set up an endocrinology consult, and he reluctantly agreed. I also requested a GI consult, but he seemed less concerned about that problem. The little hairs on the back of my neck stood up...kind of a warning sign that we would be having bowel issues before they got on board to help.

My brother had to leave a few minutes before 6, and my mother needed help sitting on the commode. We got the nursing aides to come help mom while I finished talking to the doctor. He then went in to examine her, and she also explained about her bowel issues. He assured us that they had it under control, and they were quite familiar with these types of issues. Astutely, my mother told him she'd heard that before.

While we were meeting with the doctor, the nurse coordinator came by to check on us. She was wonderful (and like everyone else, fell in love with Maya). I expressed my concerns again about the insulin changes and my concerns about the missed medications, and she assured me that things should be working smoothly now. I told her that Camille had been a wonderful help today, and that I was hopeful things would get easier. I finally left around 6:30 - my mother seemed to be resting comfortably. I checked with Camille, and she promised they would give my mother the rest of her medication tonight. I thanked her again, and I headed home.

Much thanks to my friend for her wonderful backroad directions - I managed to make it home in less than an hour in rush hour with her ingenious route. (Side seems the man my father and I saw being attacked last night did eventually stumble into the emergency room - because my friend was brought in to consult on a case of a man matching my description who checked in shortly after we reported the attack). Unfortunately, Maya screamed the whole way...partially because she hates the car, but partially because I could not give her the reflux medication on time (DH inadvertently removed the medicine pouch from my purse and left me without her medication).

I made it home fairly early tonight and spent some time with Micah before his bedtime. We gave Maya her medicine, and she immediately returned to "happy baby" status. My cousin arrived around 8:45 for a visit (and brought us some dinner). It was so nice to sit and catch up with her - I miss seeing all of my friends and going out. Two more weeks, and hopefully when we have mom back down here my world can normalize again.

Great...just got another call from my father (it is now 3:45 am). Apparently, somehow he missed a road block on the highway, and he was picked up by the state police. He is not allowed to continue on the road to my mom because there is a one-hour backup due to an accident. Just our luck! I asked him if he explained the situation to them and whether they could help him get to her. As he started talking to me about what happened, all of the sudden he started yelling at me to be quiet (hello, I wasn't the one talking!) because the state trooper was back, and he hung up on me. I decided to call Richard, my mother's nurse, and ask him how my mother is doing. She is currently resting comfortably.

Can I just say how angry I am that all it took was giving her the medicine as prescribed to resolve the issue? I called my father back and told him to turn around and go home. He would have to go all the way back and through the city and then out again to get to her with this road closure - I don't think he would be there before 5:00 am anyway, and she seems to be doing okay now.

DH and I tried relaxing after my cousin left, but Maya just would not cooperate. She kept waking up every time we put her down into the bassinet - she just wanted to sleep in my arms. We finally got her into her bassinet at 11:00. I took a nap for two hours, and then woke up when DH went to sleep. I had just started writing my blog when the phone rang.

So, I'm sitting here waiting to confirm that my father got home safely. I have spoken to him several times - at last check, he was about 15-20 minutes from home. I have a feeling he won't call me when he gets back home, and I'm not sure if I should call him again - I don't want to wake him if he is asleep. I hope that tomorrow my mother is feeling better and that we can get ahead of this pain and get her feeling better. What a day!

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.

Monday, September 27, 2010

Breastfeeding and Walking

When I was breastfeeding Micah, I learned to pump in the strangest locations...bathrooms, airports, and even in my car while driving. I used to worry that I'd be pulled over while pumping and driving, and I always wondered how I would explain THAT to a police officer.

Today, I learned that I can breastfeed in even stranger locations, including while walking from Radiation Oncology to the Rehab Unit at the hospital. Yes, while walking...with my arm half asleep and my back aching, but walking nonetheless. I had my nursing cover on while I held Maya close and walked. And they say some people can't chew gum and walk at the same time! Isn't the saying "Necessity is the mother of invention?" I guess I just have to roll with the punches and so does Maya, but at least we both seem willing to make it work.

Last night (with 3 children under the age of 4) went surprisingly well...Paige, Maya and I shared a room, and all three of us managed to get some sleep. Paige and Maya went to bed around 9:30. Paige woke up briefly around 3:30 am when I went to bed, but she quietly called me a goofball and went back to sleep. I learned that my niece is a kicker - she likes to turn perpendicular on the bed and jab me with her feet all night while she mumbles in her sleep. It was kind of cute...except for that kicking part. Maya woke up a little after 7 and woke Paige up as well. I tried my best to convince Paige to fall back to sleep, but she was ready to go. I turned on the tv and let her watch Hannah Montana while Maya and I snoozed...except Paige kept asking me questions like "Where is Hannah Montana? Who is that? Why did she say that? When does she put the wig on? Why?" I resisted the urge to tell her it was a stupid concept and I had no idea why she puts on a wig and suddenly no one recognizes her, but I realized even that would be a futile discussion with a 4 year old. I have decided I will never put Hannah Montana on for her again - we'll stick to Word World or Dora next time.

Around 7:45, Micah woke up. I was able to leave him in bed until almost 8 when Paige announced she was done watching tv and wanted to go get Micah. Paige, Maya and I went to get Micah. He was THRILLED to see Paige this morning - he started yelling "P" over and over again. We brought him downstairs, and I made Paige promise to jump on DH and wake him. I was amazed by how grown up Paige is...she took off her own pull-up diaper and threw it away and helped me get milk together for her and Micah. I decided to make apple pancakes for the kids for breakfast. Paige loved them...but I could not get Micah to eat anything for breakfast.

I made a few phone calls while the kids ate breakfast. I spoke to a family friend (I wanted to check on her mother, Della, and give her an update about Peyton and mom), arranged for Paige to attend Micah's music class, and I spoke to SIL to check on Peyton. Peyton is definitely improving, but she needed oxygen last night. If she can stay off of the oxygen tonight and they can safely switch her to nebulizer treatments every 4 hours, she will be released tomorrow. Otherwise, she could need another day in the hospital.

The babysitter arrived at 9:00, and she helped finish feeding Micah. I found 3 different outfits (with Paige's help) for the kids and handed them off to the babysitter. While she dressed the kids, I took a quick shower and got ready. DH ran outside and did a little bit of musical car seats before he left for his meeting so we could manage for the day. The babysitter left with Micah and Paige around 10:00 to take them to music class. My father arrived around 10:15 and I drove the three of us (including Maya) in his car up to the hospital.

We arrived fairly early at the hospital and we found my mother in absolute agony again. We were waiting for the social worker to come see us to give us an update about my mom's transfer today. As we were waiting, we talked to her nurse to see what we could do for her. After watching my mother's discomfort continue, I asked to speak to the doctor. I again requested that something be done for my mother's pain, and for once he seemed a bit sympathetic. Luckily, Dr. "Suave" and his nurse stopped by to check on mom, and when they heard about how much pain she was experiencing, they went and brainstormed a few ideas with the rehab doctor. Dr. "Suave" was quite funny...he has an accent, and he poured it on thick as he said "while that is the opposite end from my area of expertise, I will do everything I can to try and fix the problem." After a quick huddle with Dr. "Suave," the rehab doctor decided to order a special topical pain reliever for my mom (and I cannot believe it took him two weeks to finally agree to do this for my mom).

Before mom's lunch arrived, we managed to touch base with the social worker again. She said that there was a bed available at our #2 choice, and we were still waiting to hear about our #1 choice. She said she just did not know if we would be moving my mother today or tomorrow, but told us she would let us know later.

I just have to say, again, how wonderful the nursing staff at the hospital has been. We've especially appreciated the extra mile a few of the nurses have given. We've just been so thankful for these nurses who have spent so much time getting to know us and make my mother's stay at hospital more pleasant.

Today, our nurse was "Philadelphia" (my mom's nickname for one of her nurses, since she is from Philly and graduated from Temple University like my mom). Even though she was not assigned to us, my mom's other nurse also spent a ton of time helping out today, too. My mom always asks for her, even when another nurse has been assigned, and she has been so obliging - she always stops by and takes care of my mother. I think I will forever be grateful for the kindness she has shown my mom.

Philadelphia is about the sweetest person I've ever met...she is so kind and concerned, and always calls my mom "Mrs.," no matter how often my mom tells her to use her first name. Philadelphia, however, does not always catch onto my mom's sarcasm...yesterday, she was showing me how to give my mom a shot, and she told me to grab the "fatty part" of my mother's thigh. In her most indignant voice, my mother says "Did you just tell me I have fat thighs?" Philadelphia turned bright red and started stammering and apologizing, and tried to explain that subcutaneous shots are delivered into areas with fat, and that everyone has a layer of fat under their skin, so when she said "fatty part" she was not trying to tell my mom that she had fat thighs...After a few minutes of the apologies, I had to put her out of her misery and explain that my mother was just teasing her (especially since my mom had a huge grin on her face and kept winking at me)! She is just too sweet to be tortured. She seemed to be working her tail off today between doing things for my mother and her other patients.

After lunch, transport actually arrived early, for once, and we still went late to radiation because we were not ready to go (Philadelphia was running a bit late trying to get my mother's insulin together and take care of a few other odds and ends). We also were still waiting on the special topical pain relief medication for my mom, and unfortunately it did not arrive before we had to leave. Radiation was quick - once again, we spent the greatest percentage of our time waiting for the return transport.

We had a chance to speak to the radiology nurse and we discussed some of my mother's recent symptoms. He indicated that they would probably maintain her current steroid dosage for the rest of radiation. My mother's last day of radiation will be on October 14...the day before her 65th birthday. I think finishing radiation treatments would be a wonderful birthday gift!

We finally made it back to my mom's room at 3:00, and we heard the nurses and doctors making preparations for my mother's discharge. We were nervous because we did not like feeling so rushed to move her - we were afraid it would not give us enough time to make a smooth transition. Luckily, the social worker showed up and told us we had one more day of reprieve...they did not have all of the papers or prescriptions in order, and she was hopeful that tomorrow she might be able to get us a bed in our first choice facility. So, once again, tonight we wait. We expect to move my mother to a new place tomorrow after radiation - probably around 3 or 3:30.

Because of our anticipated move, my mother had no visitors today. She did make a few phone calls, however, and she was in good spirits late this afternoon. Apparently, the medicines they gave her relieved her pain and discomfort. My mom and I chatted a bit, and I realized that she had forgotten to tell me that her co-worker came in for a visit yesterday. So, thank you, for stopping by - it meant a lot to my mother, and she was thinking of you today.

My father, Maya and I left for the day around 5:15, and we made incredible time driving back. Maya only screamed for 20 minutes of the trip - a significant improvement. I wish she did not hate driving in the car so much. I truly hope she outgrows this soon. I convinced my father to come inside and spend a bit of time with Micah and Paige and join us for dinner. DH had made dinner...just spaghetti...but we all sat down and ate together. It was nice to sit at a full dinner table. I have to say, having Paige join us for a few days has been kind of fun for me. She is so articulate and entertaining, and I love having an "older" child around the house.

My father left pretty quickly to get home and do some work. Micah and Paige played together for a few hours before bedtime. Micah was cute as he cuddled up with Paige on the couch while they watched some tv together while I nursed Maya. DH put Micah to bed around 8:30, and Paige and I entered into negotiations about bed time. I told Paige bedtime was after Micah went to sleep. She told me she wanted to stay awake "later." I explained that it was later, and she disagreed. Maya fell asleep while nursing, so I told her that I wanted to take Maya upstairs. Thankfully, Paige wanted to join us, and I was able to get her into bed and put Maya down. Maya did not want to stay asleep, and after a few attempts, I brought Maya downstairs for another half an hour until she fell asleep. I brought Maya back up to the bedroom and found Paige sound asleep, sprawled across the bed. It looks like all three children may actually be asleep for the night. I hope they sleep through the night until morning!

Tomorrow morning, Micah has preschool and I am going to attempt to visit a rental house a few blocks away. My father and I will carpool up to the hospital again tomorrow, and we hope to learn which of the two facilities have a bed available for my mother. We expect to be moving her mid-afternoon, and we hope the transfer will be quick and easy. DH will be driving up with Paige (and possibly Micah) in the late afternoon to bring her back home for her dance class. If Peyton is released from the hospital, Paige will return home, but if Peyton needs to spend another night in the hospital, we will bring Paige back home with us.

Sunday, September 26, 2010


I think I am surrounded by insanity, and I am starting to wonder if life will ever again return to a semblance of normal. DH's Facebook status yesterday said it all (and perhaps some of you will appreciate the old tv show reference):

Dear Mr. Kotter:

Please excuse my son from school today. His grandmother has brain cancer. His Aunt had a stroke. His cousin has pneumonia. His other Aunt's brother had to put the dog to sleep. It has not been a good week.


Epstein's Mother

It just seems so ridiculous that all of this could be going on in our lives! Too much to possibly believe. My mother keeps telling us we should go buy lottery tickets with the way our odds have been running lately.

I'm not even sure exactly what time my day started today...I think the baby woke up early again (maybe around 7:30) and I went upstairs to nurse her and nap in bed (I know I was awake when she woke up). Micah, however, slept quite late...he did not stir until nearly 9:30! I realized that we had to get going quickly because we had Micah's second swim class today. We decided it would be easiest for us to all go to swim class and then leave for the hospital. This week, DH attended class with Micah (while I spent the time nursing Maya and on the phone trying to figure out how all of our sick family members are doing). Micah seemed to have fun, but DH thought Micah did much better in class with me than with him. I may be doing the rest of the classes with Micah, but we'll see.

After my 30 minutes on the phone, I learned that my niece was being kept an additional day in the hospital for observation. The doctors were still sticking to their asthma diagnosis, but SIL was a little worried that after all of the medication, she was still not improving. I agreed with her, and I shared with SIL a discussion I had with my friend who is a thoracic (lung) surgeon in Miami. She told me that it can take an extra day or two for pneumonia to show up on xrays, and that the shot of penicillin she had for the strep could also have confused the tests. She also said that my niece could be reacting to the pneumonia before they can diagnose it, but that if the nebulizers alone weren't helping, there was a good chance she had pneumonia brewing. My friend had asked if they had done blood work and re-done the xray, so I suggested that Jen request the tests if my niece was not improving.

I also told SIL that we could help out with our other niece. SIL is a stay-at-home mom and my brother has to go to work on Monday. I knew that left SIL torn between staying with her two daughters. I told SIL that I could either bring our babysitter and Micah to her house for the day to stay with her older daughter, or that we could bring her down to stay with us for a few days. She thanked me and said she would think about it.

DH, Micah, Maya and I arrived at the hospital around 12:45. We got a great parking spot on the street, and we went inside to help my mother with lunch. There were even a few extra items on the cart for us. Micah was kind of trouble - I can't seem to keep him off the floor of my mother's room. I took a bunch of Purell and a cloth and wiped the floor down as best I could...I hope that did something to keep him somewhat safe. Micah was fairly grumpy today. Every time one of us left his sight, he became hysterical. I think all of this leaving to spend time without him has given him separation anxiety.

All my mother wanted to do today was to "put her ears in" and sleep. I know she is exhausted, I just wish I knew if it had something to do with her reduced steroid dosage, increased brain swelling, radiation exhaustion, her cold, or depression. Some of those things we can help. Today was also a terrible day with her intestinal issues. I just wish they could figure out how to help my mother...she keeps telling me how miserable she is.

In the afternoon, friends arrived for a visit. My mom's friend made another beautiful hat and an apple cake. We all enjoyed a bite of cake, too. Micah was not behaving too well - I think he became hysterical over everything. He wanted to drink from a water bottle, but got mad that the top was stuck. I opened it for him and he got upset because he did not open it himself. He wanted to eat cake, but it fell on the ground, and he did not want the replacement piece of cake. He dropped something on the floor, then screamed because he bumped his head and wanted mommy to kiss his boo-boo. It went on and on...the tears were a constant, as were the temper tantrums. He was probably being so awful because he missed his nap today...perhaps we won't try that again.

After our visitors left, my father and I decided to run out to another rehab facility to check it out. My father was very out of sorts today. He wants to do what he can to make things better for mom, and he seems at a loss trying to figure that out. We talked again about how unfair this situation is, and about how awful it is to see mom uncomfortable, especially since it isn't the cancer making her so miserable. When we arrived at the rehab facility, there was no one there to show us around. We did talk to a few family members of people who had been there, including one man whose wife had stayed at both places we are considering. He seemed to think the staffing was better at the second place, and that for people with medical issues, it was better because there are doctors on staff. He felt the other location was beautiful, clean, and the rehab staff was good, but he did not think they were sufficiently staffed to handle his wife's issues. They gave us a lot to think about, and we'll have to finalize things in the morning.

When we returned to the hospital, Micah was kind of a mess. We spent some more time with mom and started to pack up for the day. We finally talked to SIL, and the doctors had finally determined that my niece has pneumonia. She is on IV antibiotics, but will need to be in the hospital at least until Tuesday (possibly Wednesday). They asked if we would come and pick up their other daughter to come stay with us, and we agreed.

At 6:00, we drove out to the hospital, picked up my niece and then drove home. Maya screamed almost the entire ride home. She kept asking why Maya was upset, and did everything she could to calm her down (held her hand, sang to her...she was really cute). We arrived home around 8:15, and Micah was exhausted and went straight to bed. My niece asked to stay up a little longer, so we talked and played while I nursed Maya. She asked if she could sleep in our room, and we got her into her pajamas and set up a cot on the floor for her. Maya fell asleep, and I took Maya and my niece up to sleep. Unfortunately, my niece was too tall for the cot, so she is now tucked into our bed with Maya asleep next to her in the bassinet. I'll go sleep up there with the girls tonight and DH will take the couch. Perhaps tomorrow night we'll set up the air mattress on our floor.

Tomorrow will be a big day as we figure out how and where we will be moving my mother. We know that she will not be moved until after her radiation appointment at 1:45. I am still very nervous about this move...I just hope my mother can tolerate the transports and that they can handle her needs at the rehab facility. I'm quite worried about that, but I guess we'll have to take it one day at a time, right?

3 months

Tonight, as I am sitting here trying to write, I am having trouble thinking over the sound of my pump. I've mentioned this on a previous blog, but my pump talks. We never have conversations...I'm actually quite aware that it is an inanimate object with no REAL ability to talk. But the hum of the sounds like the pump is talking. Usually, it just mocks me with its obnoxious attitude, calling me "Wacko" or telling me to "Let it go." I've managed to reach a truce with the pump this time around. Mostly, I just ignore the mocking, and it works and actually produces a decent amount of milk (8 ounces for me tonight!).

While most of you are wondering whether you should call the authorities because I've finally cracked, I'm certain my mother will smile when I read this to her. I know this because the first time I ever blogged about a talking pump, she called tell me that her printer talks to her. We were hysterical on the phone as we discussed our talking inanimate objects and compared crazy statements. My mother thought her printer said things like "beautiful," and I asked her if her printer could teach my pump to get a better attitude. Even now, as I'm listening to it say "wonderful," it is still copping an attitude with me...there is a definite sarcastic tone in there.

Today was an incredibly challenging day...and Maya's 3 month "birthday." I cannot believe she is already 3 months old...or that she has spent the majority of her life in a hospital. Twenty years from now, when she announces that she plans to become a doctor, I'll know it is because she feels most comfortable in a hospital after spending so much of her time there the first months of her life. I need to work on giving Maya more floor time...hard to do at a hospital. I try to put her on the bed with my mother for a little while each day, but she just isn't getting enough time down to explore and play on her own during the day. She is thriving, despite all of her hospital time. She is a social butterfly, who smiles at everything. She can roll from belly to back, and I think she is already able to hold a sit for a few seconds at a time. I love how she coos and talks to me, and she is amazing at holding her head upright. We finally have her reflux under control, but we are still having issues with her sucking and swallowing. When she does lay on the ground, she kicks herself all around in circles. She is starting to put everything in her mouth, so she is usually a drooling mess.

Maya woke up at 7:45, and I brought her into bed to nurse. Micah was wide awake, too, and by 8:15, we decided to bring him into our room. He came running down the hallway and jumped into bed with his usual screams of "Mama" and "Daddy," and he pulled all the pillows on top of him, proudly declaring "Night night." As usual, he was adorable this morning. My mom called while we were all snuggling in bed, just to tell me that she was feeling much better this morning. I put on the speaker phone, and she had a chance to chat with Micah a bit. Unfortunately, Micah behaved like a typical toddler and became shy the minute the phone was near him - he did blow kisses and wave, but his words completely disappeared.

We took the morning a little slowly. Micah refused to eat his breakfast, and Maya fell asleep in the swing for about an hour or so. I spoke to my father, and we decided to drive up to the hospital together today. We left our house around 11:30, picked my father up, and did not arrive at the hospital until 12:45 or 1. All of us went up today...Micah, Maya, DH, me, and my father. When we got there, mom was finishing up her lunch...unfortunately, because we were not there, she had the wrong lunch (and was complaining that she did not like it). We need to get there a little earlier tomorrow to make sure she eats the right food.

Mom was thrilled to see Micah and spend a bit of time with him. We actually took him outside to the children's playdeck, and he had a fabulous time. My mom had physical therapy shortly after we arrived, and she seemed very sleepy. She was flat again today...not smiling or talking much, and very uninterested in everything. All she kept asking was for me to "put her ears" in for her. I kept asking her if she wanted to unplug the ipod and talk to us, and she said no. After her physical therapy session, I asked her if she wanted to go outside to get some fresh air and see Micah playing on the playdeck. Again, my mother said no. I gave in and we returned her to her room. While she lay in bed, my father, DH, the kids and I were out on the playdeck for a bit. We returned to mom's room, hoping to find her in a better mood after a rest...but no such luck.

We decided to leave early since mom did not seem interested in having company. It was 4:00, and we all drove next to visit one of the rehab facilities. The location was pretty, and the facility seemed nice, too. I met the staff in the physical therapy room and asked a bunch of questions. We also met the weekend charge nurse for the floor where my mother will likely be. I have to say, I am definitely a little concerned whether they are sufficiently staffed to assist my mother as much as she needs assisting. It seems to me that most of the people there need very little assistance, and I am concerned that my mother needs far more assistance than they are accustomed to giving. I guess we can always hire an additional aide for her, especially overnight, if she needs the additional help.

After our visit at Brightwood, we decided to drive up to the hospital where my niece is staying to visit her. She looked good, but was fairly sick of being at the hospital and taking breathing treatments. The latest is that they think this was an asthmatic episode (although I'm not certain they can rule out infection, either). They gave her a single dose shot of penicillin for her strep infection, but they have not given her any other antibiotics. She is still having nebulizer treatments every 2 hours, and needs to be at every 4 hours before they will release her. We'll see how she does overnight and Sunday.

After our short visit, we stopped at Panera for dinner. Once again, Micah decided not to eat anything. I do not think he ate anything all day. He refused breakfast, he refused lunch, and he refused dinner...he just would not eat today. We got back in the car and headed home. My dad napped a bit on the way, and I caught up with my other sister-in-law to find out how her visit with our sister-in-law who just had a stroke went. We dropped my father off at 7:45, and made it back home a little after 8.

DH had just enough time to bring Micah over to the tail-end of our block party while I nursed Maya. Maya was hysterical - she screamed for almost an hour on the way home, and by the time I got her inside, she was inconsolable. She was hiccuping and choking and being quite the drama queen. She was too upset to even nurse! I finally put her on my shoulder, walked with her, and soothed her with some songs, and when she finally calmed down a bit, I was able to nurse her. I think she had those leftover post-hysteria hiccups for another hour or so. She finally crashed around 9:30, and we moved her upstairs to her bassinet by 9:45. DH and I watched some television before I crashed for a few hours.

I hope that tomorrow is better for my mother...I hope that she has some of her spunk and humor again, and that she is able to find the drive to build her strength. Right now, she has no energy, and it is frustrating. It is frustrating because I know she has the strength to fight harder, and I know she could be making bigger strides in her physical recovery if she could find the energy. Her physical well-being is critical to how she can enjoy whatever time she has left. If she wants to try and travel, or spend time with her grandchildren, or go out to dinner, she has to be able to sit in her chair for several hours at a time.

I wish I knew whether her current state of tired was depression, radiation exhaustion, or just actual physical inability to tolerate activity anymore. I wish I knew what she really should be capable of doing, so that I know how hard we should be pushing. Everyone says that the left-side "neglect" is her biggest issue...her brain has just forgotten the left side of her body. If we could teach her brain to pay attention, she is strong enough (and has enough control) that she would be able to walk and stand. BUT, the biggest component in overcoming neglect is personal awareness, and my mother just isn't interested in paying attention to the left side of her body right now, and that is her biggest barrier to progress. I guess I just have to be patient and see where this journey takes us...and I'm even less patient than my mother.

Saturday, September 25, 2010


Every day, my mother has been asking me how she is going to live without our faces, especially the children. She seems to be thinking about death as banishment...being sent away from us, aware, alone, scared and far away, buried under ground. She worries about how she is going to live when she is buried...she is concerned about being cold, animals getting in, bringing pictures of the family, etc. Part of our discussion each day always includes a list of things she needs to "take with her." - Yesterday, she wanted to bring the ipod - wouldn't Steve Jobs be thrilled? Today's item was her cell phone (and her charger). She wants to be able to call us if she is scared or lonely.

I think what she means when she asks me how she is going to live without our faces is how can she possibly leave us? I keep telling her that she doesn't have to live without our faces, and I keep telling her not to go anywhere. Each time, I can only think "No, mom, the real question is how are we supposed to live without YOUR face in our lives?" Some days, like today, she talks as if death is already here, or that she has an upcoming expiration date. I keep trying to explain that there is more time, but sometimes, just sometimes, the thought creeps into my head that perhaps she knows something I do not. I hope it is just her fear of the future and what it will bring, and that we can work on assuaging that fear.

This morning, Maya woke up at 6:00 am...a rarity for her! The good news is, she slept through the night, so I'm guessing she is feeling some better. DH thinks she might have sneezed herself awake...I bet that would have been cute to watch! DH got himself up and out early today to attend a conference up near the hospital. My mom also called around 7:00 or so to tell me that she was miserable - I felt awful that I couldn't help her. Her nurse came in, so our conversation was brief.

Maya fell back asleep nursing, and I kept Micah in his crib until 8:15. At that point, he was getting really loud, so I decided to let the baby sleep and take him downstairs to give him his bottle and start breakfast. Once Micah realized that DH had already left for the day, he started to melt down again. The only thing that worked was to turn on Elmo for him.

Our babysitter arrived today, right at 9:00. She was able to take over with Micah, but he was definitely grumpy today. At 9:30, the baby woke up, so I brought her downstairs to nurse. The babysitter helped me juggle the children, get them dressed and fed, and gave me a break so that I could also hop in the shower. We left the house a few minutes before 11 so that I could drive Micah and and the babysitter to class for Micah. Unfortunately, dropping them off might not have been the best idea...Micah started to scream when she was putting him into the stroller. I am amazed that no one tried to stop her and accuse her of kidnapping with the fit he pitched!

As I drove up to the hospital, I received another call from my mother. She was again quite upset and told me that she was miserable both from the cold and the intestinal pain. She told me she just needed to talk, so I chatted with her a bit while I drove, and explained that I was already in the car and would be there with her before lunch. My mom seemed relieved to know that I was on my way, and she again hung up when her nurse arrived.

I arrived at the hospital a little before noon (and no, I had no issues driving today). I forgot to mention that they finally re-arranged her room a few days ago. They turned her bed 90 degrees and pushed it up against the side wall so she can now face the door. She says she doesn't notice the change, but I think she can see more of the room now and the people in it. Before, anyone who entered the room was in her blind spot, and it often made her nervous that people were coming and going and she could not see them.

When I first got to the hospital today, my mother was in her speech therapy session, but she was curled up on her side with her head buried in the pillows. She seemed very sleepy, but she was participating in her therapy. I stood quietly in the corner to avoid disrupting the session and nursed Maya. Just as she was finishing her therapy session, her lunch arrived.

I got Mom to sit up and eat her lunch, and she told me that SIL had been by to visit her this morning. She said they had a nice visit, and she mentioned that she likes having the morning company. I don't always remember to post when SIL stops by for a visit, but she has been great about stopping by in the mornings 1-2 times each week, and that means so much to my mom!

Some days, due to the steroids, my mother has a voracious appetite, and today was one of those days. When it kicks in, there is no slowing her down or convincing her to think things through so she can better use her left arm. Today she was very focused on eating her fruit and her ice cream, but because of the diabetes, we are supposed to make sure she eats the proteins first. My mother was never the most patient person, but what little patience she once had is now gone. She was grabbing at food and trying to eat and asking me about it before she was even sitting upright. I kept telling her we needed to sit her up and arrange the food, but all she kept asking about was her ice cream and fruit. She had hummus and pita, a shrimp tortilla wrap, fruit, and chocolate ice cream with chocolate sauce.

She seemed to enjoy her meal, but was having a bit of a struggle eating the chocolate ice cream. I tried to slow her down and get her to think about using her left hand to anchor the ice cream dish, but I could not even get her to put her spoon down for a second - she was hyper-focused on that ice cream! I think that they need to work with her on using her left arm during meals at a time when she isn't going crazy for the ice cream.

Right after lunch, my father arrived - he had taken a trip up to one of the rehab centers to check it out. He said it was nice and that he thought it would be a nice place. He was very...out of sorts...all day. He just seemed snappy and fidgety and upset, but I couldn't get him to tell me what he was thinking and feeling. He kept getting defensive and telling me to leave him alone and that he was fine. I wish it was easier to get him to talk about his feelings...he was clearly upset today, and did not seem to be able to express it.

The three of us waited a little while longer for Mom's transport to radiation. It finally arrived (late again) and we headed downstairs, where DH joined us. For once, they took her back immediately after we arrived, and then we had to wait another 30 minutes for transport to arrive and return her to the room.

We returned around 3:00, and my mother seemed pretty sleepy. She was a bit cranky this afternoon, and kept wanting us to put her "ears" in (that is how she asks for her ipod). At 3:45, the PT arrived to set her up in a better wheelchair and work on her strength. My mom went to PT and worked on pedaling (she is doing much better now) and standing. At 4:30, PT returned mom to her room, and all she wanted to do was nap. DH left during Mom's therapy session to try and get home for Micah and relieve the babysitter.

During my mom's physical therapy session, my brother called. Apparently, my niece is sick and had to be taken to the hospital. As if he hasn't spent enough time in the hospital lately. Add that to the list of bad karma, right? She is doing well, and it looks like she might have an infection, but she may need to stay there for a few days (and it may prevent my brother from coming to see Mom for a few days). So, in case you were wondering, so far this week, my sister-in-law (married to one of DH's brothers) had a stroke (I don't think I've mentioned that yet...she is doing well and is now in rehab) and now my niece is in the hospital - as my brother posted on his Facebook status, "the hits keep on rolling." I think I'm afraid to ask what else can go wrong, so perhaps I should ask instead "Why us?"

Mom was pretty flat today...not so interested in chit-chatting or interacting. She seemed annoyed during therapy sessions (but participated), and all she wanted to do was listen to her ipod. The good news is that over the course of the day, her cold seemed to improve. She was barely coughing or sniffling by the end of the day, so I hope it means that her cold will be gone tomorrow.

Around 5:00, my mom's visitors began to arrive. My mother ate dinner while they were visiting, but the entire time she kept asking me to turn on her ipod. I kept telling her that she should wait until everyone left to turn it on, but she kept getting annoyed at me.

They have repeatedly told us not to turn on too much stimulation at once for my mom...either the tv or conversation, only one conversation in the room at a time, ipod or visitors, etc. and we often forget that advice. Because it can increase her fatigue, I've been trying to control the over-stimulation while I'm in the room, especially when she is tired (not that anyone else cooperates). My Dad has a bad habit of talking to her while she is listening to me read her your posts, or dialing the phone and shoving it in her ear while she is trying to eat and have another conversation. Our guests often engage in side-conversations with me or my Dad, and my brother, DH and I are often guilty of that same mistake when we are there together. In the end tonight, I gave in and turned my mother's ipod on while her visitors were there. She seemed fairly uninterested in talking to anyone, and I wonder what was going through her head...exhaustion, too many thoughts, sadness? I hope she was just tired and wanting to sleep.

With all the other bad things happening and seeing my mother down a bit today, I've been thinking again. For all these months that my mom has been ill, I've been feeling quite lost. Untethered, really, as if I am being tossed about at sea without an anchor, just managing to keep my head afloat. But from May until August, the one thing that got me through was the belief that my mom would get better soon, and I'd have my anchor back. Since we got our diagnosis of GBM, the realization that my anchor is forever lost has been devastating, and each day it hits me like a breaking wave, trying to pull me under.

I never thought that I would have to give birth to Maya without my mother there to whisper words of encouragement and wipe my brow as she did when I gave birth to Micah. I never thought I'd have to hear her crying over the phone while I was in labor, apologizing that she just couldn't be there. I never thought that I'd spend my first week at home with two children without my mother there to help with the night shift, or take over a portion of the day shift so I could just nap. I never thought the one babysitter I would trust with my newborn child would be unavailable. I never thought that during such a rough adjustment period I would be spending all of my time running back and forth to the hospital worrying about her instead of selfishly having HER worrying about me and making my life easier. But most of all, I never thought this change was permanent.

When Micah was born, I was able to breastfeed him for 10 months because my mom came with me all over the country to work conferences to take care of him. I just assumed she would be there to do it all over again with Maya. I was able to go away to a work conference for 5 days when he was only 9 months old because she was able to watch him for me. And I never had a moment of worry, because I *knew* my mom would take care of him exactly as I would. I just always assumed that I'd have my mom to lean on for the next 20 years while I raised my children...and I always assumed that they would be up for the babysitting for at least another 10-15 years - heck, my grandparents were!

How am I supposed to go through life without my anchor? Even worse, how am I supposed to become an anchor for those around me? Some days, all I want to do is to curl up in bed with my mom at the hospital, have her stroke my hair, comfort me, and tell me this is all going to be okay. Because some days, it just doesn't feel okay. Today, it doesn't feel okay. Today, I miss my mom, even though I just spent the entire day with her. This is different than dealing with my grandmother's dementia...I missed her for years because she was gone before she died. My mother isn't lost, she is right here with us, personality and all...and yet, I still miss her. Or perhaps I just miss how she anchored that something different?

Friday, September 24, 2010


Have you ever felt like crawling into bed, pulling the covers over your head, and staying there for three days? Or possibly a week? Or flying off to an island in the middle of nowhere to plant yourself on the beach for days at a interruptions? I think I'd like a vacation from reality right sickness, no hospitals, no runny noses, no nursing, no schedule to keep, no one screaming Mommy or Tess - just for a few days. I'd like to watch some bad tv, read a stack of trashy novels, sink my feet into the sand, feel the ocean lapping at my feet and breathe the salty sea air...actually, I think I'd just love 24 hours responsibility-free.

Last night was a rough night...the baby woke up at 10, 12, 3, 4:30 and 7 because she was all congested and uncomfortable. At 7:11, my mom called! Unfortunately, the home phone in our bedroom was dead and we did not get to the other extension in time. I tried calling my mom a bunch of times, but she was not picking up. At 7:30, just after Maya fell back asleep, my mom called again. She wanted to let me know that she was doing okay (and that she was waiting for a nurse to arrive to help her with the commode). When the nurse arrived, I said goodbye and I hung up the phone.

At this point, Micah was wide awake, too, and my day began. I walked into Micah's room and picked him up. He gave me a hard time changing his disgustingly dirty diaper, and then we went downstairs. I made him scrambled eggs for breakfast and gave him an English muffin with apple butter on it. Right as the babysitter arrived to help out, I heard the baby screaming upstairs. DH was STILL sound asleep with the baby screaming right next to him in bed. How is it possible to be that close to a baby and not hear anything? I brought Maya downstairs to nurse her and worked with the babysitter to get the children dressed (I put Maya in a cute little hat to match Grammy) and field a few phone calls and tried and plan the day.

Once DH finally made it downstairs, I took a quick shower and got myself ready, too. DH decided to stay home today and attend Sukkot services while I drove with Maya out to the hospital. My father had left for the hospital on the early side to attend a chemotherapy instruction class (I asked the doctor if the instructions included more than "take the anti-nausea pill an hour before taking the 4 chemo pills and take them the same time each day, about an hour before radiation" and he said it did not, so I decided to skip the morning class).

I have to tell you, it was one of those of those days when my brain just did not seem to function in tandem with my body. Somehow, I managed to miss every exit on the highway. I felt like my Great Aunt Hilda, who used to follow all the lines on the side of the road off every exit and get herself terribly lost and then call my grandfather to come find her. I managed to drive right past the exit for the highway (and did not realize it until I saw signs for the next exit). I exited onto the next highway, and then had to take the next exit so that I could turn around and start heading back. I tried following a few signs that were posted, but I guess I was confused because instead of going back to the interstate, I got off on a local highway. It was 10 minutes before I was sure if I was even headed in the right direction.

I called my brother to make sure I was on the right track, and he helped me figure out a route into town. I then managed to drive right by the exit I had planned to take into the city. Eventually, I ended up downtown...and missed two other turns while the GPS (yes, I got this lost even AFTER turning on the GPS) screamed at me. Finally, since I knew where I was, I turned off the GPS (hey, I just didn't need a machine making me feel any more stupid than I already did!) and made my way to the hospital...about 30 minutes longer than it should have taken me. As if an hour-long trip with a screaming baby isn't long enough!

At least when I arrived at the hospital, the garage was open, the security guard let me in, and my parents were in the room. Patrice, the wonderful woman from food services who helped us organize break fast (and who came upstairs yesterday to meet my mother in person - cannot remember if I shared that or not) sent me up a dish of macaroni and cheese to try! It was delicious, and probably the first time I had eaten lunch in weeks. She sent up 2 dishes, one intended for my mother. My mother was not in the mood to try the macaroni and cheese, so my father enjoyed lunch for a change, too.

Delicious was not feeling well today - I think all the congestion dripping from her nose to her belly today made her Little Miss Pukes-A-Lot (actually, I think she was Little Miss Pukes-AND-Poops-A-Lot, the Drama Queen today - and for the sake of DH's dignity, I won't explain how I'm also teasing him with that statement). Maya rarely ever spits up, but she puked 3 times today! The first time was all over me just after I ate lunch.

I can barely remember the sequence of the day, but my mom's nurse, Donna, was back at work today...assigned to another patient, but she kept coming in to help out anyway (and she finally gave my mother that foot massage she promised her!). My mom's nurse today was Ed - he has been wonderful to us, and he has a great sense of humor. My mother kept joking that Ed is like the guy walking behind the elephant in the circus know, the one who always gets stuck picking up all the shit? Yeah, somehow, Ed always seems to be the one called in as the 2nd to help my mom. Ed laughed, and my mom said that she had no choice but to find humor in the embarrassment or die from humiliation. Ed also kept teasing my mother back...he told her that today she was "dropping logs like a college boy, not girlie little pebbles." Aren't you now glad you got to share in our bathroom humor for the day?

My mother did much better with the commode today. The GI doctor came in early this morning - he did not really help much at all (I wish we had been there), but he did order no more disimpactions. I hope that we can keep things stable for my mother. At 1:45, we went down to radiation, which was relatively on time. It was transport that was the issue - we waited almost 45 minutes for them to show up to take my mother back to her room! Dad and I stayed downstairs to meet with the doctor's chemotherapy nurse for a private tutoring session. The information was mostly a repeat of what we had already been told, but she was quite helpful and gave us the phone number to the oncology social work. She has some additional information regarding benefits and services that might be useful for us.

My father decided to go meet with the social worker, and I decided to head back to Mom's room. The baby was super cranky and miserable, and I just couldn't sit with her in another meeting. She seemed to calm down on the walk back, but she was on meltdown mode in my mom's room. When I returned, Donna, my mom, Ed and I were all sitting in Mom's room with the baby. Donna decided to hold Delicious for a bit...and naturally, Delicious puked all over her, too. Ed started gagging and ran out of the room like his you-know-what was on fire! I have never met a nurse so afraid of nursing and baby vomit! He is right...he may need a bit more time before he becomes a father, because his wife would kill him if he tried that move on his own baby! I told him that it is different when it is your own child, but he sort of had this phobic look on his face.

The rehab social worker came by to give us a list of nursing homes on our insurance plan, and we discussed which ones would have beds available. My father and I will go check out the places as soon as we receive confirmation about which ones are available.

Before I left for the day, Maya puked on my father, got hysterical a few more times, refused to nurse, and just general made life miserable for all of us. We spoke briefly with the rehab doctors and then I drove Maya home. Luckily, she was so tired that she fell asleep in the car. DH went to services while I managed the kids. Maya had a very cranky night, but finally fell asleep around 10. Hopefully, she'll sleep better tonight.

Thursday, September 23, 2010

The Battle, Part 2

Sick. Sick, sick, sick, sick, sick. We're all sick. My mom, Micah, Maya and me - we ALL have a cold, and we're pretty miserable. When I came home from the hospital yesterday, I was concerned that Micah had a cold. When he woke up this morning (complete with a bloody nose), I was certain he was sick, which did not help his mood any. I knew I had a sore throat, and I was worried that I was coming down with something, too. I debated whether it was safe to visit Mom, and decided that I could put a face mask on and wash my hands frequently and it would be okay.

The babysitter arrived and we decided to keep Micah home from class today because he was too sick and miserable. I tried reaching Mom's insurance and had a work conference call (I still have one project going strong). Our family friend stopped by with a lasagna for us for dinner, too. Added bonus - she helped change Maya's diaper while I handled a few odds and ends. I finally left for the hospital with Maya around 11:15, and Micah through a total and complete fit, screaming "Mama, no go!" as I walked out the door. It is so hard to leave him behind when it makes him so sad. To make matters worse, Maya hates the car, so, per usual, she screamed the entire trip. I asked DH to stay behind today because the babysitter needed to leave a bit early, and I knew I would need to stay at the hospital late.

On my way up to the hospital, the insurance coordinator called back. She was not particularly helpful today - she told me the decision was out of her hands and she would not be able to do much to help us. She did inform me that the insurance company and the doctors were scheduling a peer-to-peer conference to try and work out a solution.

When I arrived at the hospital, I checked in with the rehab doctors to learn more about the peer-to-peer conference. I also expressed my concern about the transport issue for my mother - whether she could be safely transported (and withstand the trip time-wise) in a wheelchair. The resident said she would check back with the attending physician and get back to me.

I stopped into Mom's room, and immediately realized that she has a cold, too. I felt terrible for her - someone must have exposed us all to a cold at the same time since we all woke up sick today. Luckily, mom doesn't seem terribly sick (or at least she did not seem that sick today). My cold has been progressing - my chest is definitely tight and congested.

I helped Mom finish her lunch, and we sat and talked for a bit until Dad showed up. We then went down to radiation around 1:45, and once again, Maya was a hit! Mom told me that it was so important to her that Delicious came to visit with her every day...she said that she wanted to soak up every minute she could with her. Everybody loves seeing Maya, and she gets so much attention from patients and nurses. I think Maya is getting spoiled! For once, radiation was relatively on time, and we were back up to the room by 2:30. The psychiatrist was present to help us have a family discussion, and my brother was just arriving. We also learned that her GI consult showed up...while we were at radiation. They informed us they would be back tomorrow, but we were frustrated that we had to wait yet another day.

The therapist was very kind...she let my mother lead the discussion about how she was feeling. We were all a bit emotional - my mom had a chance to express that she is worried about my father (and my brother and I chimed in on that point, too), and she shared with us some of her fears about death. Before we were able to get too far into the discussion, my mother's stomach issues kicked into high gear - she was in too much pain to continue the discussion. The therapist told us she would continue to come back over the next few days. We hope that the sessions are helpful to mom - she has so many things on her mind right now, and we all want her to maintain her good spirits.

Right after the therapy session, we got word that the social worker wanted to talk to us because she had an update from the insurance company. We were nervous...we were afraid that the insurance company was not going to extend her time. While we waited, we went with mom to physical therapy. She does seem to be making progress - she was standing and walking more, and she seems to stand more easily and stay up longer. She is still having issues with her left knee buckling when she stands and walks, but it does look like real progress. She is standing taller and straighter, and she is much steadier, too.

It took almost an hour before the social worker showed up, but she met with us after mom's therapy...and told us that they agreed to extend her in rehab at the hospital until Sunday!! That gives us a number of days to identify a good rehab center with a bed available and work out the transport situation (and it means she'll be able to claim that foot massage, Donna). I just hope mom can manage the transports back for radiation.

Such a relief for us! If Mom starts making more significant progress, there is a chance they could extend her stay longer, but for now, it looks like we will be moving her next week to another facility until the end of radiation.

After our meeting with the social worker, we went back in to mom's room to share the news. Dad decided to head back home, and my brother and I stayed to help with dinner. Actually, my brother did most of the helping since I was nursing Maya and giving her reflux medication. My brother left towards the end of Mom's meal, and I helped her with dessert. Mom was exhausted and needed to nap. I helped her get comfortable, then Maya and I left for the day.

The ride home was uneventful. I was back around 7:00 pm, but DH and Micah were not home yet - they had gone to synagogue for Sukkot services (Sukkot is another Jewish holiday that celebrates the Fall harvest season). They arrived home around 7:30, and Micah was thrilled to see me. We sat down and ate dinner together, and then spent some time playing with Micah after dinner.

He definitely has a cold, but the worst of it seems to have passed. His nose is a little less runny now, and he is practicing wiping his own nose! He went to bed a little after 8. I changed Maya into her pajamas and tried nursing her to sleep. At 9:00, she was out cold, so we took her upstairs to bed. Unfortunately, she woke up crying about 20 minutes later, and we had to bring her back downstairs. In fact, all night tonight, she has been cranky and waking up. I tried nursing her to sleep around 10, but she woke up at 12 again. I nursed her again and she went back to sleep, but she woke up again screaming at 3:00. I realized at 3:00 that she was stuffed up and uncomfortable - seems that Maya has a cold, too. We gave her some Tylenol, and we decided to put her on an incline sleeper in our bed for the night. DH and I took turns rocking her to sleep, and for now, she is snoring loudly on the bed. I used that blue nose bulb to try and relieve her congestion - she hates it *almost* as much as Micah did.

I can hear Micah snoring over the monitor (and he has woken up with a cough a few times). My chest is killing me, too, but I'm not particularly congested. I'm hoping that we all start to feel better tomorrow, and that my mother's cold is not nearly as bad as the kids seem to be.

Tomorrow I plan to head back up to the hospital. My father and I may go check out a few facilities, too. We are still exploring other options, but we have identified a few top contenders. Hopefully, tomorrow we will all be feeling better. Okay - I'm headed back up to bed tonight...and hoping that Maya sleeps through the rest of the night.

Wednesday, September 22, 2010

The battle, Part I

I wish I could update everyone with the wonderful news of our successful battle...but that just isn't the case. It has been a rough day, and I'm incredibly frustrated by the system right. I wish I could understand why insurance offers benefits that they make impossible to utilize?

Micah and Maya were in action at 8:15 this morning. At 9:00 am sharp, I called the insurance company to talk to our care coordinator, but she did not answer the phone. I left a message with my information, and hoped she would call back before our meeting.

The babysitter arrived and I took Micah to preschool. He did a little better today - he had a few attempts at pushing and screaming, but I was able to intervene and keep him from any major incidents. The "good" news is a few of the other children were doing the same thing, so Micah did not look like the trouble child. There is one parent, however, that has this way of watching me (and Micah) as if she is threatened by us. Micah pushed her daughter last week, and she has been giving me this "you are a parent of a horrible, uncontrolled child" kind of look. I have since decided that her child cries at everything, and seems to always get pushed by EVERYONE, and perhaps she is a bit of a drama queen. The only child who seemed to be upset, or pushed, or injured all day was her child. Coincidence?

Right after Micah's class, DH and I took Maya and headed up to the hospital. Even Delicious was armed for battle...complete in her Baby Armour outfit, courtesy of Under Armour. I passed my father on the way there, and we all arrived around the same time. During my car ride up, the insurance coordinator called on the phone. She went over our benefits, and said we have 60 days of rehabilitation coverage. She indicated that if the doctor recommended a longer stay, it would be covered. She also told us that we could take mom to a "sub-acute" rehab location, and that our insurance would cover transfers back for radiation treatment.

Many of you are probably wondering what the difference is between acute and sub-acute. I certainly was! An acute rehab facility is a higher standard of care than a sub-acute facility. It requires the following:
  • treatment from a multidisciplinary team consisting of at least two therapies;
  • medically stable patient that is capable and willing to participate in intensive therapy for a minimum of three hours per day, at least five days per week;
  • program that is expected to result in significant therapeutic improvement over a clearly defined period of time;
  • program that is individualized and documentation that outlines quantifiable, attainable treatment goals;
  • treatment in an inpatient facility because the individual requires: 1) 24-hour a day access to a registered nurse with specialized training in rehabilitation care; 2) frequent rehabilitation team assessment and intervention due to the potential risk of significant change in physical or medical status; and 3) an intensity, frequency and duration as to make it impractical for the individual to receive services in a less intense care setting.
Our problem appears to be that my mother has evidence in the record that she could not sustain the intense 3-hr a day therapy schedule, her progress is not considered significant, and the professionals have failed to indicate attainable goals for her.

A sub-acute facility, however, is more like a nursing home with therapy. Only 2 hours of therapy are required each day, and only steady progress towards therapy goals is required. When I arrived at the hospital, I ran into the resident on my way to my mother's room. I talked to her about the situation, and she was thrilled to hear that we could take mom to a sub-acute rehabilitation facility, and felt that was a more appropriate option. I again explained that I felt another week or so at the acute level was warranted, especially now that she was making it through all of her therapy sessions each day and starting to make progress. She agreed, and went to talk to the rest of the team.

I helped my mother finish lunch and I read her the blog and her messages. My mom was so touched that her nurse had posted a message to her. Our friend also arrived for a visit (she was at the hospital for an appointment) and DH went to talk to her for a bit. I also received a message that our advocate would not be able to attend the meeting today - unfortunate.

The team convened at 1:00 pm, and we heard their recommendations/explanations. I made our case for continued care at the acute level and discussed the importance of the proximity to the hospital at this point in my mother's recovery. I understood from our meeting that the entire team was on board with getting another week for my mother and slowly working on identifying an appropriate transition to a sub-acute facility if this next week did not result in sufficient progress for her (or if she continued to find the 3 hours of therapy overwhelming).

The team, however, indicated that our insurance was the issue. We put their social worker in touch with our care coordinator at the insurance company, and then we waited. We waited for about four hours before they came back to us with an answer. We were down at radiation (which was quite late again), and I had just come out of the radiation room where my mother had asked me to come in with her and take a picture of her in her mask for you all to see. That is the picture of the day!

The social worker was sitting there in the waiting area, and she informed us that the insurance had denied the request to stay at the hospital rehab facility, but approved our request for a sub-acute rehab facility. She also told us that we needed to move mom in the morning! We were can we possibly identify a new facility and move mom in less than 24 hours?

We got on the phone and started calling insurance, but the case manager has yet to call back. I will hopefully reach her in the morning. We have a list of sub-acute facilities, and we've received a few recommendations that we will check into. In the meantime, we intend to appeal the decision, and ask for more time to identify an appropriate location and create a transport plan. We are also going to make an argument that we need the extra time in the existing rehab facility to help my mother achieve some more goals...such as building sufficient strength to be transported back to the hospital for radiation by wheelchair.

So, we are seeking recommendations for a good nursing home/rehabilitation location close to the hospital. My mother is not able to withstand a long transport at this time, and frankly, I'm not certain my family can handle the additional travel time either. Several of you have asked why not move her radiation treatment? Brain radiation is very is calibrated to a particular machine, the treatment plan is very specific, and it requires a special mask to be built. My mother would have to start radiation, build a new mask with far less sensitive equipment, and have the radiation done by people with much less expertise than the current hospital. Unlike radiation for some other types of cancer, the radiologist and the equipment truly do matter in the success of the treatment. Many other places would not even attempt radiation with my mother's condition - it is just too advanced and too complicated.

Today we return to battle - hopefully to secure another week to try and buy more time to build my mother's strength to handle a stay at a sub-acute facility. We also have a GI consult today (and perhaps we can turn that into a new hospital stay and then she would be entitled to 2 more weeks after that stay in an acute rehabilitation facility). If we fail to win the appeal, we have to hope for 24-48 hours additional to effect the transfer to a sub-acute facility.

I am definitely worried about whether a sub-acute facility can handle my mother's needs right now, and whether my mother is strong enough to handle the daily transport back to the hospital for radiation. I wish there was an inpatient radiation option - my mother would certainly qualify. What a mess!

After fighting with the hospital and expressing our frustration to the doctors, I think we finally convinced the attending on the floor to go to battle for us for the next week. It may just be too little, too late, as the record they have created thus far has not been helpful. We arrived home well after 6:00...poor babysitter! Micah was MISERABLE, he was cranking and crying, and just would not cooperate with her. To make matters worse, I think he has a cold - his nose was all stuffy and he sounded terrible. I don't know how we can bring him to the hospital this weekend, but perhaps this cold will be short-lived.

We put the kids to bed, and my phone was ringing off the hook - thanks to all who called to give us some suggestions about facilities and find out how we are doing. We are frustrated, but hope today will give us better answers.