Today was an important day…we helped change the policy at Hopkins and my mom got to see and spend time with her grandchildren! It was truly amazing to see their reunion, and I think it lifted all of our spirits just a little. What more can I ask for in a day?
I’m a little later than usual posting this…Maya just did not want to go to sleep. She kept crying every time I tried to put her to bed. She wanted to sit and cuddle and smile at me. I guess she had such a good day that she wasn’t ready for it to end.
My father called around 8:30 with his morning update…they had no news for us about the results of her doppler from the day before (checking for a blood clot in her arm), and they had no estimated time to move her to rehab. I knew immediately that it meant that they had found a clot in her arm and were delaying her transfer to rehab. After our typical morning routine, Elliot left today for a series of meetings, and I drove Megan and Micah to Kidville for Micah’s classes, then drove with Maya up to Hopkins. My sister-in-law, Jen, arrived about 40 minutes before me and went up to visit with my mom. After she got there, she called me to tell me that they did find a blood clot in mom’s arm, but they didn’t have much more information for us yet.
When I arrived at the hospital, Maya was hungry, so I took some time to nurse her while I waited for my cousin, Jill, to arrive and babysit. While I waited, I received a call from Shareen, the hospital administrator who was trying to help us arrange a visit for my mom with the children. She informed me that she had a meeting with the hospital board to try and pitch a major overhaul in the Johns Hopkins visitation (and children) policy, and she wanted to come meet with me after her meeting.
Jill showed up a few minutes later, which gave me a few hours to go spend with my mom. I joined Jen upstairs, and we kept mom company. Unfortunately, today she had a horrible roommate – she was yelling all kinds of crazy things (and asking everyone who entered the room if they believed in G-d), and she had an alarm on her to keep her from getting up, and the alarm was going off for about 3 hours straight. The noise was horrible!
My mom was doing well, but she seemed a bit sleepy today, and she was complaining of a headache and some pressure behind her eyes. I made sure to alert the doctors about her pain. While we were up there, we learned that the clot in her arm was “non-occlusive” (not blocking anything), and they were mostly just giving my mom blood thinners and monitoring her. They had approved her for rehab, but they needed to review a CT scan to confirm she was ready for rehab and wait for our insurance to approve the move. She had a short visit from her friends Zena and Steve, and then Jen left to go pick up the girls. As I was getting ready to leave, we were bombarded: 1) the nurse practitioner who never showed up yesterday arrived to talk to me about my mom’s diabetes management; 2) the physician’s assistant for the neurosurgery team arrived to talk to us about my mom’s clot; 3) the rehab team showed up to give us an update about my mom’s move; and 4) the hospital administrator and the nurse coordinator arrived to talk to me about the visitation policy. I felt like I was holding court – there was a line out the door of people waiting to talk to me, my cell phone was buzzing with calls and texts, and all my mom wanted to do was use the bathroom!
After I spoke to the nurse practitioner (who offered nothing useful about the diabetes management plan), and talked to the PA about my mom’s clot, and touched base with the rehab doctor, I finally had a chance to meet with the hospital administrator and the nurse coordinator. My conversation with them made my day! First, Shareen informed me that she pitched a new visitation policy to the board, and it was warmly received. Johns Hopkins should be instituting a new, child-friendly, patient-centric policy in the near future. Second, she reached out to the nurse coordinator, who agreed that we could bring the children up to visit my mother! She asked only that we take steps to reduce any noise/commotion both for my mom and for the other patients, and she asked us to make sure that the children did not sit or play on the floor. Third, Shareen told me that she also spoke to the rehab floor and got us permission to bring the children there. They also agreed that we could spend time together in the family lounge just outside the rehab unit (perhaps even eat meals together there), and they gave us permission to bring my mom downstairs to the cafeteria! We were thrilled…it was a complete reversal of everything we had been told the day before, and a major hurdle cleared for our family.
At this point, my mom was looking exhausted. I decided to head downstairs to give her a bit of a break and take a nap before the next wave of visitors arrived. I ran downstairs to nurse the baby and grab a quick bite with Jill. After Jill left, I returned to the lobby of the Meyer building and ran into my brother. We headed upstairs, and on the way we also ran into my dad and my mom’s friend Mona, who flew into town from Texas to come visit my mom. Naturally, I decided to test this new child-friendly policy out, and I brought Maya upstairs with me. I have to say, that was the best…my mom lit up with a huge grin. She chatted with the baby, and even got to hold her for a few minutes. Check out the photo gallery – we uploaded a few pictures there.
As Maya got fussy and my mom seemed so tired, I decided to head back down and take another break. I left Jeremy, my dad and Mona to spend more time with my mom while I headed back downstairs. I called Elliot and he decided to bring Micah up to visit with his Grammy, and then I coordinated with Jen to bring the girls in as well. We then learned that insurance had approved rehab for my mom, and we were waiting for them to finalize a few things before they moved her.
Elliot showed up around 5 and we brought Micah in to see my mother while Mona watched Maya. Once again, she was thrilled! A short while later, Jen arrived with Paige and Peyton, who were just as excited to see their Grammy as she was to see them. After a quick visit, we decided to take the kids over to the family lounge by the rehab unit where Mona sat with Maya while they did another chest xray to check the location of mom’s PICC line before moving her.
Around 6:30, mom finally made it over to the rehab unit. We brought all the kids in for another short visit, and then we left her to finish her dinner and settle in for the night. She was exhausted, but thrilled. She actually told me today that the past few days have been so much fun – she has loved seeing all of her friends again and spending time today with the grandchildren.
We ended our evening with a lovely dinner in the food court, and Mona and my dad left to go grab a…higher caliber feast. All I can say is that after a long battle with the Hopkins administration, I’m so relieved to know that if I need to bring Maya up to my mom’s room, I can, and that we can spend time as a family with the children while my mom is in rehab. I’m looking forward to keeping Maya out of the lobby!
Tomorrow will hopefully be another good day…Mona will be with us until Tuesday, we are expecting more visitors at the hospital throughout the weekend, my mom will begin her therapy, and this weekend my cousin Trenna will be visiting, too. So…charging ahead, and hoping we can make things a little easier for my mom with rehab.