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Well, it's nearing midnight and I'm just so relieved that today is going to be over. Waiting for it was so much worse than actually going through it, which is kind of what I was hoping for, but I'm still glad it's over.
As I said before, the worst thing for me is not being able to mentally prepare for something, to envision what it would be like. These last three weeks have been like the scariest time in my whole life. I was really concerned from our previous 3 experiences with anesthesia: when Phoebe would wake up, she would be very upset about her IV port and anything that was taped to her. She would cry and ask for it to be taken "OFF!" and point to it and say "OW!" Furthermore, my other experience with having blood draws done for labs have been awful because they made Phoebe scream in pain and fear. I really couldn't help envisioning this, except times 3 hours. Fortunately, I can now say that this is not how the day went.
Still, going in was pretty terrifying, but I definitely cried on my way to work. I was listening to Colm Wilkinson sing "The Impossible Dream" from Man of la Mancha. If you don't know Colm Wilkinson he has one of the most incredibly rich, pure voices ever. Man of la Mancha is about a man, disillusioned with the world, who starts to imagine himself as a knight errant who gallantly tries to do good in the face of endless evil and injustice. I have decided that we are now an Arthritis Quest. Because no matter how daunting this unbeatable, incurable disease feels, we are going to fight it bravely.
Lyrics included because music is always important for me on these big procedure days:
To dream the impossible dream
To fight the unbeatable foe
To bear with unbearable sorrow
To run where the brave dare not go
To right the unrightable wrong
To love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star
To love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star
This is my quest
To follow that star
No matter how hopeless
No matter how far
To follow that star
No matter how hopeless
No matter how far
To fight for the right
Without question or pause
To be willing to march into Hell
For a heavenly cause
Without question or pause
To be willing to march into Hell
For a heavenly cause
And I know if I'll only be true
To this glorious quest
That my heart will lie peaceful and calm
When I'm laid to my rest
To this glorious quest
That my heart will lie peaceful and calm
When I'm laid to my rest
And the world will be better for this
That one man, scorned and covered with scars
Still strove with his last ounce of courage
To reach the unreachable star
That one man, scorned and covered with scars
Still strove with his last ounce of courage
To reach the unreachable star
Anyway, I picked up Phoebe around noon and said good bye to Cordelia and we were off! We had great traffic driving down and Phoebe slept most of the way, despite having had a pretty long and pretty recent morning nap. I was glad that she was nice and rested for the long day!
We arrived at our rheumatologist's and Jason made it there while we were still in the waiting room! Phoebe got so excited and started yelling "Dada!" when she saw him.
Phoebe was first examined by a resident. She was pretty nice. She went over our history. She tried to get Phoebe to cooperate and let her look at her feet and hands by putting an exam glove over them and then feeling them through the glove. Phoebe was happy to put on the glove but not super keen about having her fingers touched and bent.
Then Dr. B came in and she did the exam while the resident observed. I know Phoebe already has a relationship with Dr. B, but the contrast was shocking. Dr. B asked if she could examine each part and Phoebe would just hold it out for her. When she was done with one hand, Phoebe automatically offered the other. There have been other times when Phoebe was not feeling well or was tired and she was more reluctant to be examined, but this time she just did so amazing. And really, it was all good news. Phoebe's arthritis is so much better. Dr. B pointed out some very subtle fullness in her right hand, but even that is greatly improved. In fact, I forget if I've mentioned it here, but in the last two weeks, Phoebe's cyst has gone down and now is almost completely healed. So that is the methotrexate working for us. YAY.
We signed up to have Phoebe be (anonymously) part of a study for CARRA, Childhood Arthritis and Rheumatology Research Alliance. It will track her data every six months for 10 years. Studies like this are super important for making a database to improve future treatments or trials. Hell yes, if we can potentially help someone else's child in the future, sign us up in the name of science!
Dr. B started mentioning some other local chapters of groups for Arthritis stuff that she may be interested in getting me involved in as a parent advocate. I can't really remember any details right now, and she said she didn't want to drag me into too much too soon, but that she definitely had me in mind.
Then I learned some of the best news of the day, Phoebe did not have to have a shot in addition to her IV! They could put her methotrexate directly into the IV! And they didn't even need to use our supply, they would have it ready for us, as Dr B had already ordered it.
The lady with the CARRA paperwork walked us over to the short-stay clinic. It was nice of her to come, and also helpful as I would not have known where to go. The short-stay clinic is part of the "old" side of the hospital and we have only been to the "new" side so far and they both are considered part of the same street address even though they are different buildings.
We arrived at 3:30 and didn't leave until around 9.
We got a bed and the first thing they did was numb Phoebe's veins. We were offered a cold spray, numbing bandages, or some other thing numbs the area and makes a loud popping noise. At the nurses suggestion, we went with the bandages. Jason and I also wore little bandaids on our arms to have symoblic solidarity. Phoebe got 2, one in her elbow pit and the other on the back of her hand. She had to wear these for like 20 minutes, maybe longer. But they made a huge difference, I think. When it came time to do Pheobe's IV, she did not scream the way she has when she got blood drawn. And that was good because the first vein, in Phoebe's elbow pit, blew when they tried to insert it. So they had to do the back of her hand. They used a bright red light to shine on her skin to try and see where the veins are. They were able to do the IV and then draw blood. Then they wrapped up her hand real good, so she couldn't mess around with any of the stuff attached. After some more waiting, it was time to start the infusion. They started with a very low dose, which they would gradually increase in fifteen minute intervals and take her vitals each time. I think we got started at around 5 pm. Towards the very end they went down to a 30 minute wait between her last checks.
I had heard that when you start Remicade there is an observation period afterwards of about 2 hours, in case of allergic reaction. The nurses informed me they only needed about 30 minutes (unless, you know, we wanted to hang out with more free crackers and TV, then we were welcome to stay as long as we liked 😄). I was surprised, but basically they said they were starting her at such a low dose, it wasn't necessary. They were gradually increasing the dose, so if she was going to have an allergic reaction, she would be starting to have one before we were through. And honestly, they give this medicine all the time and they said that reactions were very rare.
It was interesting be there with all the nurses for whom this is routine, whereas for me this was, like, so traumatic.
Thankfully, once Phoebe was settled though, she did pretty well. I mean it was not fun and she was tied up to the machine and had various monitors stuck on her, so she couldn't go anywhere, but she was calm. Jason used the touch pad device to get on the internet and from there went to youtube to watch Sesame Street. The nurses were impressed.... They said they'd never seen anyone watch Sesame Street before! We also tried out some Moana and My Little Pony, but Phoebe those didn't keep Phoebe's attention super well.
Another way they try to make the treatments in the short stay clinic better is you can order food from the really nice hospital kitchen. The nurses told us that it is all technically for Phoebe, but that we could order for ourselves (just not to explicitly say). So we ordered two trays but still aimed for stuff Phoebe would like, quesadilla and teriyaki chicken with rice and various sides of fruit and veggies. They said it would take like 45 minutes to get food, but it was brought within 15 minute! Phoebe was not super into eating much of it, or any of the 1000 snacks I'd packed. She did drink a ton of milk, her favorite thing, and also some gummies.
At around 6, the bed next to ours got a patient, a teenaged boy who had maybe had a heart issue/surgery? We didn't ask, but he was visited by a cardiologist, and also had a large family and many visitors for school. So they had quite the gathering going on. At once point we did help him out because he was trying to call the nurse, but turned out to be using the wrong device. So we overheard him trying to call unsuccessfully for a while and helped him out by summoning one for him.
By 7 pm Phoebe got really fussy and tired. Except it came out as a bit more hyper. We tried taking a break from tv for a while to read books and draw (Phoebe is obsessed with drawing lately), but eventually she just needed me to rock her and sing to her, and she went to sleep. I think one time they took her blood pressure in her sleep, and the last time they just left her alone and didn't even bother, so as not to wake her. We got a different nurse at the end, and she was super jolly and wonderful.
Anyway, we packed up and left and by then it was quite late, almost 9! And then I got to have all kinds of traffic on my way home. Even though Jason and I left at the same time and went the same way, he got ahead of me, while I got trapped in construction traffic when they closed some freeway lanes. Waze really let me down! I was literally sitting at a dead stop for 5-10 minutes, while talking to Jason who was moving along just fine. Then when I finally made it to Orinda there was a 4 car accident moving to the side of the road, which Jason has also already missed. It took me even longer to go home late at night than it had to go during the day! Boo. I got home around 10:40 pm.
Jason got back with Cordelia, who still had not been to sleep! She asked for a bedtime story, so we let her stay up and read to her... she'd been away from us all day and it was already so late, it was better to just have a brief moment to connect than rush her straight to bed.
While we were there, I posted this photo on Facebook and shared my little joke about Phoebe getting Mouse Super Powers.
I asked everyone to contribute some suggestions for what abilities she might develop and the responses definitely were very entertaining and cheered me up.
- Grow up to be able to perfectly pair the best cheeses with fine wines
- Navigate mazes really well
- I predict that she will be excellent at finding great fruit/cheese pairings! And maybe stealthy movement/hiding, too.
- Able to run up walls...
- Advantage on adorableness
- Squeezing into small spaces!
- MIGHTY MOUSE!!
- World-class hearing!
- Fit into any size hole. Also I love that she wearing her super dress when she is doing hard stuff.
- Super swift scurry power so she'll never be late.
🐭 - Well if we take the max speed of a mouse and put it in human terms, Supermouse will be able to run 160 mph. She’ll also have superhearing and be able to emit ultrasonic tones, along with tread water for three days, climb vertically, and compress her skeleton to the size of her head to fit anywhere. Go Supermouse!
- Scare women in 1950s sitcoms and cartoon elephants.
- Brave girl, brave mommy! Sending you love
- Irresistible to cats!
🐈
Next eye exam is on Thursday, the 10th, which is my birthday. Oh no as I write this I just realized now we're supposed to do a shot on my birthday. $#@&*^!!!!!! 😨
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