We went in and got checked in at security. They gave us sticker badges that also had our photos printed on them. Jason was (minorly) irked that his said VISITOR, but the woman checking mine in changed mine to say MOTHER! Phoebe also got a copy of my sticker, even though, as Jason pointed out... his is the last name that matches her's!
We went into the Treatment Center. We then also got wristbands to match one made for Phoebe. We are also being followed around by a typo that her middle initial is G, not Q, and had to have that corrected for the third time!
Phoebe liked playing with toys in the waiting room and watching some disney channel.
But as soon as we got called in to the exam room, she was upset. She has learned a new word over the weekend: No. She immediately started saying "no, no, no, no, no, no!" and was actually shaking in my arms. She did not like being weighed and did not want to take off her clothes or shoes. A new suffed bear from a toy box wasn't going to help.....
The nurse asked if we thought a crib would be better for her than a hospital bed. I assumed that she meant something like a pack n play, and said no. I thought the bed would be fine for her to sit on and that way I could hold her or have her in my lap. (This became a minor problem later, when we found out she did need to be in a "crib" style of bed, but no one had told us that!)
We put on Bolt in the background (it had dogs!) and many, many people came in and out. One nurse listened to her breathing and checked her oxygen levels with the sensor with the red light that they taped on her finger (for the MRI , they only put it on her toe). Nurses came in and conferred over our consent forms, I had to initial a couple of things where they added more details.
A nurse came and talked to use about anesthesia. It was only then that we learned that we would not get to be with Phoebe when she went to sleep. This was a huge shock for me, especially after our MRI experience, where everyone talked us through each stage in so much detail and included us as much as possible. Furthermore, it seemed like this was not even a standard thing until recently. Several nurses and even the anesthesiologist were like "oh yeah, we USED to be able to let parents come, up until like last month or at the old hospital" or whatever.... What kind of amazing new hospital is this supposed to be if it separates parents from children before the "last" moment?
Because it seemed likely that Phoebe would be upset to say goodbye to us, the nurse told us that we could give her a sedative medicine, midazolam, to help her feel more relaxed, sleepy, less anxious, and probably not even remember the separation. She also said we could have a child life specialist come in to build a report with Phoebe and be the one to go with her. Or we could do both. I asked her what she recommended, and she said given Phoebe's age, probably best to do both. So someone came in and gave me a syringe of hot pink medicine to give to her. Phoebe was good and drank it all at once, even though they said it had a metallic after taste. They gave her a wet wash cloth to wipe her tongue. She didn't really do that, but didn't seem bothered.
The child life specialist Christine came in, and she was my favorite person of the day. She blew bubbles and Phoebe loved it! She gave Phoebe stickers to decorate her mask and a mask for her new bear. She was sweet, but honestly, she spent very little time with Phoebe at all. She also didn't show Phoebe a picture of room where she would wake up or anything, like we had with the MRI.
The anesthesiologist came in and I also liked her, but not as much as the woman who did the MRI. I guess we kind of knew it already, so I didn't have any questions. She said she wanted to find out if I could go with Phoebe, because it seemed sad that I couldn't!
A rheumatologist came in, not Doctor B, but she would be there with her for the procedure. She examined Phoebe and drew smiley faces on her knees and her left elbow. She said the elbow was so tiny, it would be hard to inject, but they would do their very best to get the right spot. I asked her if she thought Phoebe's feet seemed puffy, but she didn't really think so. Phoebe hadn't had her Naproxen that morning, but she said she would get some tylenol in the IV and to just do the Naproxen in the evening.
The room felt crowded, with people coming and going. Pretty much everyone agreed that I should be able to go with Phoebe to be put to sleep! I said I didn't want to be a problem, but if it were possible, it was what I wanted....just wheel me in with her. I guess part of the problem was they were taking her to a completely different part of the hospital, but it sucked that I couldn't walk with the gurney or even ride with her. Anyway, I got told no in the end.
But Phoebe was in a pretty relaxed mood by then, so it was time to go. Then there turned out to be another miscommunication issue, because another nurse showed up with a "crib". This was just a smaller bed with side bars that went up. The team in my room was like--- do we have to switch this baby to a crib?? She is saying goodbye to her mom and dad and happy right now; if we move her, that could change. But the nurse was like, "If they're under 3 years old, they have to be in a crib."
Um, then why didn't the first nurse of the day know that when she asked me if I wanted a crib? It wasn't even a choice!! I did NOT like that she had to be switched beds in the middle of the hallway, right before our separation! I moved her and the pillow and blanket she was sitting on all at once and she fortunately did not get upset. Very fortunate indeed! Another child could easily have felt disrupted and it could have made the separation harder. Christine the child life specialist stayed with her, but if Phoebe had started to cry, I would not have trusted her to soothe her at all because she'd barely been around her.
Anyway, Phoebe got wheeled out of two big doors. She was smiling and happy and Christine was blowing bubbles. And then the doors closed and she was gone!
I got choked up and the bossy nurse who had insisted on the crib handed me a whole box of tissues. Then we got taken out of the Treatment Center and back over to some station in the lobby. There was a big screen behind the station. Phoebe was given a number, 7. As she went through the treatment, it would post updates on her status.
At first it said IN ROOM, meaning she was being prepped. Then it switched to PROC START to show that her procedure was in process. Then at the end it would say RECOVERY. It had this for all the other children undergoing procedures as well.
Jason and I got some food from the nearby cafeteria, as we hadn't really had breakfast. Then we were called into a consultation room to wait to see Dr. B. The staff reminded us to take our door card with us when we left, and even if the doctor said to wait in the consultation room, to still come out because the doctor's just don't always know the procedure.
In the room it had a couch with the greatest Charlie Harper print on it. Jason and I had so much fun identifying all the animals, it was like a game! I'm kind of obsessed with it. I bet kids would love it.
Dr. B said that everything went well, in fact doing the blood draw probably took just as long as the actual injections. She said that Phoebe's right knee was indeed worse than even one week ago. It is crazy to me how this thing just keeps progressing and Phoebe keeps deteriorating every week since it started. We are not to bathe her for 24 hours, just sponge bathe or shower, not submerge the injection sites. She also said she was very concerned about Phoebe's fingers, which she couldn't inject, but she wanted us to start doing PT and OT for, along with the legs, before she lost too much mobility. She also brought up the possibility of doing serial casting to straighten Phoebe's leg (similar what I had as a kid to stretch my achilles' tendon), but she hoped we wouldn't have to do that as part of the PT. We are going to stay on the Naproxen until March 28th to let it build up in her system. Then we can discuss doing more.
She also wants to check that Phoebe has had all her vaccines, as I had mentioned we had decided not to add the 18 month shot yet. She said that was the Hepatitis C (?) I think, but if Phoebe was missing any vaccines with a "live virus" in them, like an MMR, she would need to get that ASAP, because you cannot have live virus vaccines when you are on the biologic drugs. So she is going to check with my pediatrician. Hep C would not be a problem though.
Ok, so now just waiting for the next referrals to call me, and stay on course until March 28th!
Next, we got to go up to the recovery room. Phoebe was very sleepy and took a long time to wake up.
She was much groggier then too, kept flopping her head and arms around. Because she was in the little bed ("crib") I couldn't sit with her, so I sat in a swivel chair with her in my lap. Phoebe was upset about all the various monitors taped to her and her IV, which was done in her hand, not her foot, this time. We gave Phoebe a popsicle, which was very messy and covered her in red streaks, as she wanted to grip it by the icy part, not by the stick. She cried if you took it away from her.
Our nurse was not super engaging, and prompted us to get ready to leave. The anesthesiologist did also stop by and said she wished she had a video of it, that Phoebe stayed happy the whole time up to going to sleep. She said she hoped she wouldn't see us often! Me too, my friend, me too!
Finally it was time to go and another new nurse came to show us out. She took us through many passageways (I hadn't realized how far we came!) and we popped back out in the main lobby of the Treatment Center. They had Mickey Mouse on TV and Jason and I stopped to discuss how we should use the bathroom one last time before making the drive home. We thought we were done, but then the nurse was suddenly back with us and was like, "Can I please show you where you're supposed to go now????" in a really irritated voice. I apologized and said I thought we were done, now that we were back in familiar territory and that we were just discussing bathroom breaks, etc..... she was unmoved. She said, how about she just show Jason then, and took him all the way back out to the front and showed him how to go back through the elevators we'd already come through. I guess she had to complete her task, but it was super unfriendly and pushy.
Overall, our experience at this hospital was WORLDS different than the smaller hospital in Walnut Creek. Maybe because having an MRI is such a big deal, vs this hospital which is handling all different types of procedures for many more patients.... but I felt like we had such impersonal care and there were many communications problems along the way:
Even before our appointment, no one even called me to say our check in time would be at 7:30 am, until after 5 pm the night before!
Then, there was the miscommunication problem over the bed vs crib gurneys and the awkward last minute forced transfer.
No one went over the anesthesia process with me ahead of time, apart from instructions not to give Phoebe solid food after 12 am and no liquids after 5:30.
No one warned me that I wouldn't be with Phoebe when she would be put to sleep. Which, if we hadn't had the MRI experience, maybe I wouldn't have expected that at all, but believe me, it made a HUGE emotional difference for ME to be able to hold her and tell her I'd see her when she woke up. And it was frustrating that everyone in the room was agreeing with me that they wanted me to be with her, but then they couldn't.
We were even instructed on having to remind doctors to tell us when to leave the consult room.
The nursing staff ranged from okay to bossy, or even frankly rude. None of the nurses we met today gave me that "warm and fuzzy feeling" of someone who just wants to take care of you and your baby. I was really missing that. And we met so many nurses throughout the morning, there was little consistency in any person following our case. Which is fine, but it didn't help us feel connected.
As Jason summed up, "They prioritized procedure over care."
I am sure the procedure went fine and I'm glad that Dr. B was able to do it herself (there was a chance we'd see someone else) and that she was able to consult with us after.
But for all that they have this fancy shmancy new building, they need some serious polish. Having just come from Walnut Creek MRI experience, it definitely colored how I perceived things, and in comparison, it did not hold up at all. Get it together, Stanford!
When we got home, Phoebe saw a pack of cookies, so she started lunch with lots of cookies. You earned it, kid!
She was supposed to just veg out, so we watched Sesame Street, and later I tried to make her take another nap. But she wouldn't lie down. She said she wanted to eat, so maybe she was still hungry. We put her to bed super early, but then Cordelia didn't fall asleep until after 9:30--- for no good reason! Phew! I'm exhausted! Today was so draining!!
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