Last night we were supposed to do Phoebe's shot, but she randomly threw up.
We were about to prep it, but hadn't explicitly told her she was about to get it, though she's a smart girl, she maybe could guess what's up. Cordelia (helpful big sister ) had also just mentioned at the dinner table that Phoebe was going to the doctor's tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).
Phoebe has never thrown up before, so she was quite startled. Poor baby.
So. Was it a fluke? Did she drink too much milk at dinner (though I've seen this girl down gallons of milk away with no trouble before)? Was she about to come down with a stomach bug (like a kid in my class this week)? Or was she having a reaction to the methotrexate Yes, one of the most common side effects of methotrexate is vomiting, either before or after.
She didn't have a fever, but I didn't really want to give her the shot if she was about to come down with a stomach bug and potentially make it worse. :( So we decided to wait until morning to see if she stayed settled or was up barfing all night. It turned out to be the former. She was acting normal by bedtime and slept all night. We can rule out germ related vomiting.
We did the shot in the morning, but then I started wondering if there was any conflict with her getting her shots at the pediatricians.... We were planning to catch her up on the vaccines we'd postposed at her 18 month appointment, and I didn't really want to have to reschedule another appointment. I left a message with her rheumatologist and didn't end up hearing back until the end of the day, and the appointment was at 1:30, so we just went ahead and did the shots. Dr. Jen checked and the only thing in the notes was No Live Virus vaccines, which we already knew to avoid. We did Hep A and the 2018 flu shot. 3 shots today!! Poor thing! Sorry, Phoebe!
Dr. B said that there is some concern that vaccines while on immunosuppressants could be less effective, but in general it does not really happen and it shouldn't matter if she had the shot the same day or 3 days later because with the regular dosing, the medicines are already in her system anyway. I hadn't thought of it in quite such explicit terms, but makes sense. Ultimately, right call, it was ok to get the shots done, which is good cuz we already did them ha ha.
Dr. B was pretty interested in Phoebe throwing up on the chair where she normally gets her shot. Yeah, how does that not seem symbolic? She said that people tend to vomit from mtx for two reasons. One is that it causes nausea. Second, is that they then start having associative nausea and shot anxiety--- seeing a needle, smelling an alcohol wipe, seeing that particular shade of yellow, even hearing the word methotrexate can make people nauseous or vomit.
I said that in general Phoebe seems really well adjusted to her medications (though she is starting to protest more as she knows what's up). She has a really fast recovery time and we don't notice any side effects the next days. But I suppose it's possible Phoebe could experience some nausea and not be able to to verbalize it? She's such a tough kid, I think she'd just power through. We usually do the shot at bedtime so she can sleep through any reactions anyway.
Anyway, I'm really hopeful it was just a fluke. If not, Dr. B said we can discuss some meds to help settle her stomach. Stay tuned.
Phoebe did great at her check up. We love Dr. Jen! She's the nicest!
She is 35.5", so almost 3 ft tall. (87%)
She weighs 28 lb 9.6 oz (69%)
Head circumference 19.65" (95%.... she has consistently had a huge head)
I brought two Phoebe Steps magnets to give to Dr Jen, but left them in the car and had to go back to get them. I dropped them off with the receptionist, but when Dr Jen's nurse Nancy (who we always see) came by, she asked her to give them to Dr. Jen. Literally, Nancy's jaw dropped and she said "OH. MY. GOD. I love this!" I told her she could have the other one! 😊
Alison told me she misses my blog posts, so I'll sit down and make myself write one before bed!
Sorry for the lack of updates all through August. I started to write a big post about All the Feels regarding Phoebe's birthday and her birth story and a further compare/contrast observation into her and Cordelia's personalities.... and then the post crashed and only auto-saved the first few paragraphs. So that really frustrated me and it wasn't something I'd planned out, so it wasn't an essay I could easily recreate. Maybe I'll return to the subject another day, but since then, this blog has languished.
Life has also been insanely busy. Cordelia graduated and started kindergarten. The good news is, she is loving it! I am impressed with how many stories she is coming home with about her day, so she really is paying attention, even if I have heard that she sometimes does still lie down on the floor during gathering time. She already has a little boy she plays zombies with and loves her teacher, so overall a huge success. We used to have to drag her out of bed every morning, but now she is eager to get ready! Not sure if she'll feel that way after 3 years in the same place, like at OFS, but we'll take it for now!
I have also just gone back to work and Phoebe is adjusting fine to her longer days. We are working hard to get out of the house promptly and having everything ready the night before. So far, so good.
Jason also had his insanely busy time with college move in, and then today was my second day of school at my preschool. And of course, Phoebe's infusion fell on the 6th as well. I was really dreading the back-and-forth process of the day, the combination of rushing around and sitting in traffic, and just feeling generally overwhelmed. In the last month, our entire daily life routines changed, I had to say goodbye to yet another close friend who was moving away, and move back into longer days and more responsibilities at work. I was feeling anxious about telling my class parents about not being there for most of the 2nd day of school, but of course, once I finally sent out the email, everyone was very supportive.
Also, I'm back in a familiar classroom, which, although it has it's challenges, I think I will enjoy a lot. All of my kids transitioned so easily, it was such a relief. Only one friend needed a little extra love and support, and even that just kind of came in waves through the day. Phew!
Anyway, best of all, Jason was knowing I was feeling drained and on Monday suddenly said he thought he might be able to get the day off to come with me to Phoebe's infusion. It was such a weight off my shoulders to not have to go alone. I mean, once we're there and we're doing them, I know it's really ok and I'm totally fine (and even better, Phoebe is totally fine), but it's never going to be something I look forward to. And the driving really wears me out, so being able to drive with Jason totally saved my day. Jason says he doesn't do much besides sit there at the appointments because Phoebe is always wanting me to hold her, so basically he is being my emotional support animal. LOL! That made me laugh, but really, just his presence made me feel so much better.
Phoebe was completely exhausted and needing to nap when we left, so this is the first time she had a melt down over going to the hospital. She cried and said no and ow and acted really sad and scared. Awwww. Usually she has been able to think about positive things that she like, like seeing the elephant topiary.
Once we arrived, she was feeling better from napping in the car.
Our infusions have been moved to the Bass Infusion Center for Childhood Cancer and Blood Disease, so we will no longer be going to the short stay clinic. It's just around the corner, of the ward, but different nurses and rooms.
When we went in, an older boy who was maybe nonverbal was having a bit of a melt down in the waiting room. My heart went out to the mom, she was really struggling, while trying to be very loving and reassuring. Phoebe was kind of alarmed by the very loud screaming and crying. The nurses weren't ready for us, so they quickly suggested we go out and play at the train room just outside.
"Beeyah!"
That was definitely the right move and put Phoebe in a good mood right away. It was some time before we got called in, and then it was more waiting through the numbing patches and getting everything set up, pre-meds, etc.
The Bass center is a little more lax on protocol. First off, we got an actual bed, not a crib, which meant Phoebe could actually sit with me! Yay! At one point they were like, oh yeah, I guess we should have you sign a waver or something since she's so little, but no one bothered. They also didn't put any sensors on Phoebe's back or toes to monitor her throughout the stay. When it was time to do Phoebe's methotrexate, the nurse put on purple "chemo" gloves, but didn't suit up like the nurses in the Short Stay Unit. I commented on it, and the two women in the room laughed and said they were usually used to handling big bags of chemo, and this seemed like such a tiny amount to them, it didn't matter.
The TV is hanging from the ceiling above the bed, which Phoebe did not like, because she couldn't do the touch screen. You also couldn't access the Internet, so no Youtube and no Sesame Street. (Eventually she watched some on Jason's ipad, but we didn't have a super great connection). We watched Elmo in Grouchland again, but it doesn't really hold her interest as it's more of a story. She watched parts of the Little Mermaid and Moana.
They did not have forehead scanning thermometers, so they had to do it under her arm. Most of the nurses had trouble with Phoebe's blood pressure. It kept reading high, but then they would reposition it and do it again and it seemed ok.
One sad thing is the therapy dog does not visit the Infusion Center.
We did have a pretty nice Child Life person come, a lady named Jackie who was in a wheel chair! (Glad it wasn't the weird guy). She brought Phoebe some toddler toys, which was great. Phoebe really liked a spinning dinosaur thing too.
Jackie also brought a toy IV and we played doctor on Snuggle Puppy and attached the IV to him. Phoebe really liked that and said "POKE!" and wanted to keep doing it. I think it really helped prepare her for the IV placement.
Phoebe did really well for the IV. The nurse was also extremely skillful. When it was time to take it out we had a different nurse, but she commented on how well it was placed and wanted to know which nurse or if the vascular team had put it in! It did bleed a lot, I noticed, but maybe she got it right in the vein or something? I was most happy that it was done successfully in one try, unlike last time. Phoebe fussed a little and only tried to move once, but other than that, held very still! Everyone was amazed with how well behaved she was all day and we got so many compliments on her precious curls.
Phoebe took this picture on my phone and now I think it's artistic. #childhooddiseases
We shared our room with a 7 year old boy who I think had cancer. 💔 His mom said Phoebe was so cute and that seemed to gross him out and he wanted to know why she thought that. She said, "All babies are cute. You were a cute baby too." He did not want to be described as cute, ha ha.
My friend's husband has been hospitalized all week due to pneumonia, complicated with Cystic Fibrosis. He'd hoped to not still be there on Thursday, but when I messaged them, he unfortunately was. So we got it figured out so that he could go through security and visit us. I hadn't realized, but the main hospital is actually connected to the old wing of the Children's Hospital--- where we were! So it really was within walking distance. He came as we were finishing up, and it really brightened our evening to be able to see a friend, even under sucky circumstances. He and Phoebe are both warrior IV buddies, as he'd brought his with him. He is not contagious any more, but doing lots of breathing treatments and therapies. I hope he can go home to his family soon.
Phoebe was kind of zoning out and ready for a nap when he arrived, but after she was allowed to get up, she got a lot more energy and started running around and giving out hugs. It was super adorable.
We did not leave until around 7 pm. From a 1:30 appointment start time. There were definitely delays-- the IV didn't even get placed until 3:30, and a few times they were having computer glitches of some kind.... so overall, a very long day. But the bonus was traffic had lightened considerably. If we'd left at 5, we still would have been picking up Cordelia at 8:30. So now we are thinking a later start time actually might be more manageable. The tricky part is if Phoebe sleeps on the drive home but then wakes up and thinks it's time to play. But today she was so worn out, she let us transfer her straight to bed with only some minor stirrings.
Well, now it's quite late and I've got to get to bed. Hopefully there won't be as long a gap between posts now.
) had also just mentioned at the dinner table that Phoebe was going to the doctor's tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).
) had also just mentioned at the dinner table that Phoebe was going to the doctor's tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).
