I'd forgotten Jason had the umbrella stroller in his trunk, so Phoebe walked from the parking garage to the hospital. I told her we were going to see the elephant topiary, and she got so excited, she started to run to it! So cute!
We had different nurses this time, and all of them were fantastic. One nurse checked us in while our main nurse was finishing up her lunch break. We did Phoebe's weight and height and then we were brought to her bed. Which was already there--- no waiting around for a crib to be delivered, yay!
This was our first time in a different room. We already had a roommate, a girl who maybe a young teen, hard to guess her age. Not sure what was wrong with her, maybe she'd had a minor surgery or procedure? She was sleeping when we got in, so we kept lights dim and tried to be quiet. Her parents were there and we didn't really talk, other than I checked with them about the TV not being too loud. They were very nice and had no complaints at all, which was kind of refreshing after the demanding mom I shared a room with a few times ago, who asked me to adjust the TV volume several times, along with having lots of attitude with the nurses. The family watched 10 Things I Hate About You. It was funny hearing the parents explain some things, like who Heath Ledger was. The girl got up to walk around after a while and was discharged a bit before we left.
Jason was able to meet us there! Having him there made everything 1000 times better!! Honestly, Phoebe just was so comfortable the entire time, the whole experience kind of blew me away.
The nurses asked me about how I liked to do things, and this time I was proactive and asked for the benedryl and tylenol to be given as early as possible, so we would not have to rush to get Phoebe to swallow it. Phoebe sat in Jason's lap and then I gave her an M&M. Then I gave her some of the better tasting tylenol. I got her to have a tiny lick of it to realize it was not completely disgusting. With some prompting, she drank it and earned another M&M. She still did not like the benedryl, but there was no melt down. I gave her an M&M half way through and then another after it was all gone. HUGE PROGRESS. Hopefully she can remember it was not so bad and we will not have to force it down her throat anymore! I think just having lots of time and not pressuring her is key!
After wearing the numbing patches for half an hour, we went to the treatment room so I could hold Phoebe for the IV placement. The Child Life person attended. At first we were told that the woman, Molly, was there today, though sadly she had not brought her dog. But then, when it was time, the man from last time showed up. Sad face. This guy is kinda weird. I don't find him very comforting and I think, as I have noticed before, Phoebe doesn't do as well with men (apart from that eye doctor from India, who was just so in dad-mode). When we watched the Mickey Mouse Hotdog song on the ipad during the IV placement, he was talking about characters like "Pete" and "Clarabelle." If you are trying to connect with a 1 year old you just met, are those really the characters you would point out?? I think it's weird, don't you? Jason agreed.
Anyway, Phoebe totally ROCKED IT, so his presence was basically pointless, though that's really no fault of his, she was just being an amazing baby girl. He did come to sit close to her by the bed, but I asked him to move so that Jason could sit there instead. (He was happy to comply, but still--- I'm not someone who normally tries to go around telling other people what to do or where to sit, so even something as small as asking him to move is me advocating Phoebe. I have to speak up for her.) So he basically just hung out and helped praise Phoebe for how well she was doing. I think unless the doggie is available, if infusions can continue to go like this, we really don't need much help from Child Life, especially if it's this guy.....
Phoebe sat so still the whole time. She basically only cried a little the moment the needle went in. Maybe our nurse Janice just did a really good job? I think Phoebe was really numbed up well for it? Janice also put a warming pack on her hand right after she took the stickers off. I don't remember the other nurses doing that, and said so, but Janice was just kind of like, "Oh really?" in a little surprsied way, so maybe they did. Or maybe they haven't and it was just one more thing that helped! Phoebe also kind of watched what they were doing, and seemed ok with it. Last time, when we had to do 2 IVs, Dawn was trying to get Phoebe not to look, and I think that was actually part of the problem-- trying to distract her too much. She said watching made Phoebe tense up and that made an air bubble, so the IV blew after a while.
Is it weird that I think maybe she SHOULD watch? I am hoping this girl doesn't grow up with a huge fear of needles and pokes---she should know what is happening to her.
They had already ordered the medicine, so there was no waiting, we were able to start the infusion right after we went back to the room. After that, it was smooth sailing and lots of TV watching. The only "issue" was that Phoebe did not take a nap. Our room was lighter-- we had a curtained window this time--- and maybe having Jason around was a little extra exciting. She laid down for a bit, but never went to sleep. We watched Sesame Street and some Berenstain Bears cartoons and ate tons of snacks.
We did her mtx and then we were all done! Phoebe even did well with Janice spraying her bandages and removing them. Oh, another thing, Janice taped Phoebe up much less than before. Previously, they put a cover over the IV, a "house" and then secured it with lots of tape that then had to be removed. Phoebe did tug at the IV a couple of times, but I told her to stop and the rest of the time, she ignored it. So that was great!
Also, no one put the hospital ID bracelet or the No Known Allergies bracelet on Phoebe. They sat on the table by the bed the whole time. This was good because Phoebe never wants to take them off--- even the following day. I think she freaks out, thinking it will hurt to remove. She is the same way about her bandaids after shot night now.
We left at like 5:45.
We took 680 home, instead of SF. It took about 2.5 hours. There are just no good options at rush hour. Sometimes I think we should drive down for a non-trafficy appointment and then stay the night and and drive back at a non trafficy time in the morning. With the infusion taking close to 5 hours of hospital time, there's just no possible way to miss traffic both ways! But it would also not be great for missing more and more time off work. No good solution here!
Phoebe napped once we got in the car, but still woke up after an hour. I have car bag of entertainment to keep her busy. When we got home, she played outside until Jason arrived with Cordelia. When we went to bed, she would not stop trumpeting--- telling me about the elephant topiary again. 🐘
Dad came!!
The evil benedryl vanquished
Janice invited Phoebe to help plug herself in!
I liked how she was getting her involved in her own care!
Phoebe called her socks "shoes"
Happy watching Elmo
Phoebe asked to get out of bed to sit in my lap and watch more shows.
Ok, time to abandon the nap attempt!
Thank you Janice!!! She was stellar. Also, check out her cute onigiri scrubs!
The song of the drive is....
listen close, it mentions a phoebe!
Phoebe was featured on a few JIA mom's pages on Facebook for JIA Awareness month. One of them asked me if Phoebe Steps had a page. I have gone back and forth about having a public Page or a private Group. I wanted to start a Group and then post when in it when I wrote a blog update here. But I don't think I could share that on a Page---- I have written too many personal things on this blog to not want to have at least some idea who is reading it. At least for now. Maybe if I went back and deleted certain posts. I dunno. Livejournal always had a feature that you could make select entries "private", but this blog doesn't seem to have that option.
But advocating and fundraising continues! At one point I got a text that I had a $50 donation, followed by a $500 donation. It turned out that one mom's company does donation matching... but $500?? I almost fainted! Not surprisingly, it was a mistake and got corrected to $50. But for a couple hours I thought we'd topped our annual goal.
We also have a mystery donation from the Amgen Foundation. Who do I know who works there or connected them with Phoebe Steps? Thank you, friend!
We also have a mystery donation from the Amgen Foundation. Who do I know who works there or connected them with Phoebe Steps? Thank you, friend!
I have gotten a few other birthday donations this month; in fact, 2 came in tonight. One from someone I have not seen in years, don't know well, and they had already donated before the walk! It's just so heartwarming. As of right now, we are at a jaw dropping $4,954! I bet we can make it by Phoebe's birthday! 🙌
I am also thinking of doing a Jingle Bell Walk around the holidays. Not sure what our local options will be, but I'll look into it, maybe SF. At least just for our family to go to, I won't try and get a huge team again.
Yikes, it's late, better go to bed!
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