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 time…no interruptions? I think I’d like a vacation from reality right now…no sickness, no Hopkins, no runny noses, no nursing, no schedule to keep, no one screaming Mommy or Jess – 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 Megan arrived to help out, I heard the baby screaming upstairs. Elliot 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 Megan 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 Elliot finally made it downstairs, I took a quick shower and got myself ready, too. Elliot 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 days…one 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 95N (and did not realize it until I saw signs for 50). I exited onto 50, and then had to take the next exit so that I could turn around and start heading back towards 95. I tried following a few signs that were posted to 95/495, but I guess I was confused because instead of going back to 95, I got off on 295. It was 10 minutes before I was sure if I was even headed in the right direction.
I called Jeremy 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 on Hanover street 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 Hopkins…about 30 minutes longer than it should have taken me.
At least when I arrived at Hopkins, 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 Elliot’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 a circus parade…you 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. We are currently considering Brightwood, Roland Park, Bayview (on the Hopkins campus) and Levindale. The biggest challenge with Levindale is that it is not fully covered under our insurance policy, but we may be able to work something out IF they have a bed available. Bayview is probably not the nicest, but if they have a bed available, they would likely be the easiest because they are part of the Hopkins system (and transports would be internal – we would likely be able to do a stretcher transport).
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. Elliot 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.