Actually, I knew she had a runny nose before she woke up because she had sneaked into my bed during the night. Yes, ever since she learned to open her bedroom door, Phoebe has been waking up at night and coming into our room. Usually I hear her wrestling with the door knob, but there have been quite a few times where I wake up in the morning and she is sleeping there, without any memory of her coming in. I used to be an incredibly light sleeper, this literally never happened with Cordelia or even when Phoebe was a tiny baby. I co slept with her and never worried that I would lie on her or anything because I would 100% for sure wake up, I usually am that light of a sleeper. But Phoebe has apparently serious stealth skills. I never really wanted to co-sleep with Cordelia, especially during her nearly 2 years of night wakings. The problem was, when she would wake up she would want to talk to us and often was very grumpy and belligerent. Phoebe just comes in quietly and goes right to sleep. It's not worth it to even try and put her back in her bed.
Anyway, runny nose, but no temperature. I was pretty sure we would still do the infusion, but didn't want to drive all the way out to Stanford to be sent home. First I called the Bass Center, and they said they don't do evaluations themselves, and to call rheumatology. I called rheumatology and their phone went straight to voicemail. I called again, still no answer, so I followed the voicemail's directions and called the hospital, asking to speak with the rheumatologist on-call.
I have done this twice before--when Phoebe's wrist developed the synovial cyst and again when I wanted to know if mtx and vaccines were ok to be done in the same day. During the latter, the operator told me to leave a message with the department instead of transferring me to the on-call, and I did not get a response until the end of the day. Again, this time, the operator wouldn't connect me to the on-call. He said, "it's 9 am, rheumatology office is open, I'll connect you." Then he patched me through to a super cheerful and helpful woman who took the message for me.
But he transferred my call to the rheumatology appointment center--- not the best place to leave a message for a doctor, apparently.
It was getting late, so I left with Phoebe. She was in good spirits and having a blast playing with a bunch of Disney figures she got from Meme on Halloween (definitely appreciated the non-candy gifts for the girls), so I knew she wasn't very sick.
The drive was pretty good, just some standard slowing, no huge traffic jams. I used the valet for parking! 👍
When I arrived, they had Phoebe wait in the train area as she had a runny nose.
When we got called in, the nurse I'd spoken to on the phone asked if I'd heard back from rheumatology----which I hadn't. So she called for me and got the ok to move forward with the infusion as long as there was no fever.
Dr. B herself called me a short time later, because she had gotten the message that I'd called the office. She said that she also would have told me to do the infusion, so yes, we were on the right track. She told me she would message on mychart me the best number to call--not the appointment line-- but when she did it was the number I'd called first at the beginning of the morning. So really the issue was with the operator A.) dismissing my request for the on-call and B.) transferring me to an inefficient phone number for the department. I asked her if my questions regarding runny nose or mtx/vaccines were appropriate uses for the on-call, as I don't really want to waste doctor's time without an emergency. She said yes, and that I had done the right thing, but gotten bogged down in protocol. So next time I will push the operator harder to get an "urgent" question addressed.
Phoebe again got a private room and her patches put on her very quickly, yay for no waiting around. We had the really great nurse Nicki from our first time at the Bass Center.
This room had a couch, which Phoebe really wanted to bounce on. Phoebe also loved looking out the window. There were some sort of bushes outside with green berries on them, and Phoebe was convinced they were grapes. She would not stop talking about them. I ordered grapes with lunch and she was excited to eat them up.
Nicki had to help me force Phoebe to drink her pre-meds. Even m&ms were not gonna cut it, Phoebe just said "No, yucky!" and cried It sucked, but I held her down and Nicki got her to drink the meds. Such a bummer, it really is the hardest part for her!
The patches seem to work really well for numbing or else Phoebe just minds pokes much less. Nicki did a fantastic job inserting the IV and doing a blood draw. Phoebe barely whimpered. She just sat in my lap and watched Elmo in Grouchland (it was even in the "scary" dramatic scene of Elmo losing his blankie..... not the most comforting moment in the movie to be watching!?"). The nurses were so impressed with her. They kept going on about what a great little baby she was and how well the name Phoebe suited her. Proud mama of this brave, brave baby!!!
We did the 2 hour infusion again. We watched the Elmo movie, parts of the Lion King, and parts of Moana. Phoebe was not into her mac and cheese, but did eat the aforementioned grapes.
We snuggled a lot, but she never fully took a nap.
I was possibly going to meet with the doctor in charge of PR-COIN, but she messaged me that she couldn't make it. So we will talk by phone some other time.
We finished up around 3. Phoebe was excited to go back out to look at the trains. She said "beans!" for the jelly bean train!
They have a lot of wagons around the hospital for people to borrow. Phoebe asked if she could ride in one when we came in, but on our way back, she spotted something even better. I pushed her around a bit extra while waiting for the valet to get my car.
She loved saying "beep beep!"
Drive home took around 2.5 hours. But Phoebe took a nap for a good deal of it and I was home by 6 pm. So I think that was a better option than waiting around until 6 to leave... with no nap, Phoebe would have been sooo tired. Overall, it was a really smooth infusion. Phoebe is definitely more congested today, but I'm hopeful she will be ok.
Zzzz goodnight.
