Alison came into town on Thursday, which worked out great so that she could be the one to pick up Cordelia from school on Friday afternoon.
In the morning, Jason dropped Cordelia off and I left with Phoebe around 8:30. Turns out I should have left a little bit earlier, because I had to get gas, and then, even though I'd been optimistically been hoping for Friday Lite driving conditions, there turned out to be a huge traffic jam right by my home, so it took half an hour to even get as far as Walnut Creek. I was not late, but we got there with only about 10 minutes to our 10:30 appointment.
Phoebe's first Remicade infusion is definitely a contender for Scariest Days of My Life and even though I was feeling less bad about going to this one, going to it alone definitely upped the Scary factor again. It was better once we were there and actually doing it, (because that's how anxiety works, right?), but the long trafficy drive is still kind of an extra ordeal on top of it all. As I've mentioned before, there's always a song that gets me through these really long days. I listened to the Trashcan Sinatras "Weightlifting" on repeat for peace of mind.
And it's beautiful and comforting, so you should listen to it too.
Phoebe napped on most of the drive, which was also ideal. We got checked in with security and went to the short stay clinic. We saw the nurse we'd had last time, and she remembered us and commented that Phoebe wasn't dressed up this time. Instead, we were both wearing shirts with cats on them (Phoebe had requested this when getting dressed by meowing).
We had a different nurse, named Dawn and she was AWESOME. We were in the same room, with the same bed (crib) as before. This time I requested a Child Life person to also come be extra support for the IV placement, which hopefully will be added to our therapy checklist, so hopefully we will have one every time. We also talked a lot about ways to make Phoebe comfortable and I emphasized how important it was for me that everything gets explained to her or acted out on me before we do it to her.
First, Phoebe got the numbing stickers. Dawn put little mesh gloves on her elbow and hand so that she couldn't pick them off. I also wore a glove.
I took a little video to help show Phoebe, to help her remember the treatment.
Then we hung out and ate a bunch of snacks while we waited for them to work. Thursday afternoon I'd retail-therapied myself and gotten a bunch of gluten free, random, mostly healthy snacks at Whole Foods after work. Phoebe likes snacks more than meals, so I'm always on the look out for new stuff for us to try.
Moon Cheese, anyone? It was a hit with Phoebe....
Phoebe also really liked honey roasted chick peas. I'm sure I sound like the crunchiest granola loving mama ever, but let's be real, we also had oreo thins and fruit gummies, so there.
While we were waiting, the Child Life expert checked in and she had a therapy dog with her!!! Phoebe was very excited to pat the doggie!
Then we also had another unexpected visitor. Dr. B came by our room, even though she wasn't scheduled to see Phoebe at all! She didn't examine her (I'm sure giving Phoebe a break from people touching her), but we aren't scheduled to see her again until June. We had exchanged some emails over Phoebe's eye news and also going over the last blood work. I don't really understand how to read blood work. Phoebe's Red Blood Cell Width continues to be increasingly higher than "normal" but apparently that is not much cause for concern. She has some markers for recovering from being anemic, which she tested as in February. She is significantly lower in Vitamin D than Dr. B would like, and I guess that is a concern. (We are increasing her to 2 gummy vitamins a day now--- the 4 year old dose.) I asked if she needs to be outside more, but apparently that is hard to balance with the fact that Naproxen can apparently make you get severe sun burns. Also, her inflammation levels were higher than March, but not as high as February.....
Anyway, we discussed that a little and also talked about the Walk, which would take place the following day. She didn't stay long, but it was so thoughtful of her to come check on Phoebe.
Phoebe had to take her tylenol and benedryl. This is one of the hardest parts of the infusion. Phoebe does not want to drink the tylenol and the benedryl tastes HORRIBLE to her. She has gagged and nearly thrown up both times now. Oh dear, I don't know how to make this better for her. I told her that I knew it tasted really bad and we watched some Sesame Street but nothing is really gonna change the taste problem. I think the bad experience is making her hate taking her Naproxen too now, as she has started being fussier and resisting it.
Then it was time for the infusion. I had said that last time, there had been an adult gurney in the room with us, and I'd been able to sit on that to have Phoebe in my lap. Dawn was not totally against me climbing into the crib gurney, but ultimately they were able to arrange it that we went into another type of room to get the IV put in. So I was able to sit on the bed with Phoebe in my lap and hold her. The therapy dog jumped up on the bed to sit with Phoebe! It stayed amazingly calm, did not even move during all of her crying.
I think Phoebe cried a bit more during this IV set up, but she had more expectations about what was happening to her. But they were able to do it with only one poke this time--- they did it in her hand, which is where they'd had success last time. Poor baby, it's still just awful to have to go through, I hate it.
Oh and they also took more blood, which made it take a while. I didn't know they were going to do that as they had 2 weeks ago. Hm. So I guess Dr. B is wanting her blood checked again over some of that last blood work.
From there we started the infusion of Remicade, which is about 2 1/2 hours itself. We ordered lunch and watched some more Sesame Street.
Oh and our room got another occupant. Another toddler, same age as Phoebe who had just had her tonsils an adenoids removed. She was not very verbal and was MISERABLE, just crying hysterically, and the mom was a little demanding with some of the nurses over not being able to order food for herself--- they said that ordinarily she could, but since her daughter was on a "liquid and soft food" diet restriction, the kitchen couldn't do it. I offered her a granola bar later, but she said she had some herself and that her mom was going to come and bring her some food.
'
I put on the Little Mermaid and Phoebe went to sleep in her bed! She slept most of the movie and then some! She woke up when it was time for her saline flush and then methotrexate. At last, we were done!
Phoebe did not like having all the IV tape removed. They have really great spray that removes all the sticky stuff, so they peel off easily, but she still did not like it.
After we were done, Dawn wanted to show Phoebe off to everyone else in the clinic, because she was just so cute and brave.
We left shortly before 4 pm. On a Friday.
It took me two and a half hours to drive home. For whatever reason, Waze actually took me through SF and across the Bay Bridge to get home. I did pretty well until I got to the heart of the city, and then things were just a general mess. But I'm sure things were a mess everywhere. That's just the way of the Bay Area!
My mom and sisters had arrived about an hour before me, Jason got home about half an hour after me. Alison had made us enchiladas for dinner, yum.
Though I didn't have much appetite at that time because I've neglected to mention that all throughout this day, I'd had a KILLER sore throat and one of my ears was feeling crazy stuffed up. By the end of the afternoon my throat was super swollen, so I made myself an 8 pm urgent care appointment online. It was so easy. Awesome.
Anyway, I went in while Jason handled bed time and turned out I had an ear infection and Strep Throat. Well, I tested negative for Strep A (whichever strep that is... they can apparently get a result in a matter of minutes) but they grew a culture over the weekend and called today to say that it was positive for some other kind of strep, the girl didn't say which. Fun Times.
Anyway, the doctor put me on antiboitics straight away and told me I should do all 10 days even if I didn't have strep to try and avoid giving whatever I've had to Phoebe. Cordelia has started having a low grade fever and snotty nose, but has yet to complain of a sore throat. Phoebe so far seems fine. I was definitely nervous during the infusion, but they were taking her vitals every 15 minutes-- no fever or problems. We'll see what happens to the rest of the family I had in town, and if I managed to give them some delightful germs.
My throat was hurting soooo bad at this point in the evening, I got myself a smoothie at Starbucks and then waited around for forever at the 24 hr Walgreens for them to give me the uncomplicated order of 10 days of amoxicilin. I was very much doubting I would be able to talk at all the next morning, for the Walk! I took one antibiotic as soon as I got home, another one when I woke up at 2 am, and another one as soon as I woke up.... Thank goodness, I started improving quickly enough to power through the Walk!
But I will have to write about that another night because I am falling asleep as I type this. Goodnight.
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