I called Walgreens and got a refill on the Lotemax eye drops because with it being given hourly, I can see us running out soon. The little bottle is feeling almost empty. The pharmasist was like, that should last at least 7 days... but I was like, um, it's for my 1 year old. We are doing it hourly, sometimes it doesn't go in, so maybe we've wasted a little bit, but we are just going through it! I'll call the doctor if I need to...they were able to put it through to the insurance for me. We're not completely out, but with it being given so often, I don't want to run out and be rushed getting a refill.
We dropped Cordelia off at Meme and Papa's and then drove back to Palo Alto to the rheumatologists office, which was in a building across the street from the children's hospital. It had a lot of pediatric medicine happening.... the waiting room was also shared for gastroenterology and "infectious disease" patients. I was kinda scared to let Phoebe play in the waiting room--- what does that even mean?!
We got called in fairly quickly. Our nurse's name was Melissa and she was great. She was also a mom, with a 3 year old and a baby at home, so she was just back from maternity leave. She also shared that her eldest had been born prematurely, with many health complications, and was even having surgery soon, so we were talking about how important it is to build trust with young children going through medical procedures. It helped to hear from someone so empathetic, as she was teaching us how to give Phoebe her injection.
First, we were given a sort of skin-like sponge to practice. We got to draw up water with the needle and try to get any air bubbles out by adjusting the amount or tapping it to get the bubble to the top and then expelling it. Actually before you you put the needle in the water, she said to draw air into the syringe for the .5 mL dose. Then you stick that in the vial of medicine and inject the air, so you are not trying to pull medicine out of a vaccuum, increasing pressure in the container so you can draw it out. At least, that's what Jason is explaining to me. Our needles are very small, so you have to be careful to inject them straight and not bend or break them. When you stick it in, you want to hold the syringe like a dart-- don't keep your finger on the plunger. Then pull it out at the same angle it went in.
The methotrexate is yellow and some very powerful stuff. We were advised to not get it on us, to wear gloves or wash hands, and that it could affect your fertility if you got it on your skin, etc.
(oh look, can i just drop in a picture from google? it looks like i can!)
You can see why the Sweeney Todd lyrics from Pirelli's Miracle Elixir come to mind....
"What is this?..... This is piss!"
Well, I could use a Miracle Elixir for my baby!! ha ha
Then it was time to do the shot on Phoebe. You have to stick it in "fatty" tissue, not muscles... arms, thighs, or stomach. We picked thighs, where Phoebe has some good chub to her.
We wiped Phoebe down with alcohol. Jason held her still and I gave her the shot. I used one hand to squeeze up some of her skin a bit and then stuck it in her thigh. It went in so easily, the needle must be so so sharp. Then, I pushed the plunger and injected the medicine. I did it very quickly, but it still felt like such a long time compared to when you see a nurse do it.
Then, I took it out and didn't know what to do with the needle! We hadn't practiced that part! I put it down too quick and it started to roll-- can't have that! When we do it at home I will definitely need to have something right near by for a seamless transition.
Anyway, Phoebe cried, but then we comforted her. She got to pick lots of stickers and some prizes. She liked that quite a bit.
Fortunately, mtx does not hurt to be injected. If we start a biologic drug later, apparently those sting.
Dr. B also dropped in, a special visit that she made time for. She was pleased to see Phoebe walking and climbing into chairs, and checked her knees and elbow injection sites. Overall, she found Phoebe much more flexible and she protested much less about being touched.
I still have not heard from her PT/OT referrals, so she is going to send me their contact info so I can follow up with them and get Phoebe seen.
We will also have to have blood work done again in 4 weeks, after 4 doses of mtx. Tuesday will be our injection day. The labs will be monitoring her for any ill effects from the drugs. It feels so scary--- like, what if I'm giving her this medicine that instead of making her better is going to poison her body?! As a parent, you just feel that fear.
Overall, giving her a shot was just kind of surreal. I mean, it sounds awful, but then you just do it. But you do it knowing that under normal circumstances, parents get to go their whole lives with never giving their child a single shot!
But here we are, and now I've done it.
I think the long-termness of the diagnosis is just getting more real to me. Like with the eye drops, I was like, ok two weeks. But from the sound of things, uveitis is something that is to be controlled, but may not fully resolve. We may be going down to daily drops instead of hourly drops, maybe for years. We may be doing weekly injections--- for years. We may hit medicated remission, wean of medicine... and only to have flare ups again and get to repeat the cycle. That's what CHRONIC disease means. This is Phoebe's whole life we're talking about. It's my whole life now too.
We got lunch at Chipotle. (Yes, I dragged Jason to Chipotle. He was miserable.) Phoebe did not want to eat any of her packed lunch. I tricked her into eating some of her crunchy chick pea snacks by putting them in the "treat" compartment of her bento tray. Ha ha, more fun to eat now!!
She liked the tortilla chips for a while, but then had more fun feeding them to Dada. Then she dipped her fork in the guacamole and fed him that way too. Pure toddler sweetness. Just look at that face.
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