What do a two year old girl and a stuffed horse have in common? Both got their “ports” accessed at the clinic today. (The horse was a much easier patient.)
Serenity had her weekly visit today at the oncology clinic at Primary Children’s Hospital. Rachelle is an awesome girl at the hospital – a Child Life specialist – and each week when we visit she spends some time playing with and talking to Serenity. Today she noticed that Serenity was carrying her stuffed horse. So Rachelle took Horse through the same process Serenity goes through at each visit. First Horse got an ID band around her leg. Then Horse got her port accessed. First we cleaned her chest in 3 different steps, and then we turned on a movie for Horse and she sat very still while Rachelle put the needle into Horse’s chest. Then she taped the needle in place and Phil carefully pretended to give Horse her IV medicine. Horse watched the movie part of the time, and sometimes she watched the IV. Then Rachelle went through the steps of taking of Horse’s chest bandage off and taking the needle out. When it was all done she praised Horse for holding so still and being such a brave patient.
Then it was Serenity’s turn.
It doesn’t get any easier, even though we’ve been doing this regularly now. We hold Serenity down and talk to her to try and soothe her while the nurse cleans her chest and places the needle. Serenity screams bloody murder the entire time, begging us to stop. It breaks my heart. We numb her chest ahead of time, so I think it is fear more than pain, and somehow that makes it even harder to watch.
Once the line is placed and her clothes are back in place, she does calm down quickly. Today she had a blood draw and then we were off to the Rapid Treatment Unit for another lumbar puncture.
Normally it takes 30 minutes or more before she wakes up and they bring us into the recovery room. Today Phil had an errand to run and I went to talk to someone in the billing department. 10 minutes later I was heading back to the RTU when I heard a page for Serenity’s parents. My heart sank to my stomach. As it turned out, she had awakened very quickly and when we weren’t there she was frantic. I raced back to recovery and she was yelling Mommy! in such a sad angry voice that it hurt my heart. I was able to calm her quickly and settle her down and within a few minutes she was sitting up and smiling again.
Serenity turned two on Sunday and we had a little party for her at Phil’s parents’ house Monday night. She loves to tell us, “I two!”
We are still having the hardest time getting her to take her oral medication. Her side effects have been very minimal this month and so she is taking way less medicine than she was last month. But she is fighting it fiercely. We end up dosing her two or three times because she spits so much of it out immediately. I keep hoping that she will adapt and this will get easier, because we’ll be doing this for 2 1/2 years. But so far it’s getting harder, not easier.
Thanks to everyone for your well wishes and support. We really feel blessed and supported by all our friends, including the ones we’ve never met.
I’ll pray for her to somehow take her medicine well. Is she old enough to understand rewards? Can you give her a reward for taking it? That may get old/expensive after a while, but you probably wouldn’t have to do it for 2.5 years.
Adria, could you tell that having her horse go through the process helped Serenity any? And why did they have to stick her again? I thought with her port, she didn’t have to be stuck anymore because she was already accessed. You’d think since I read your website almost everyday I’d know the scoop – sorry for my missing something! On a different note, how are you, Phil, and your other children doing?
Praying for you all daily. Hugs!!! 🙂
Sweet baby girl!! I have been following you and praying for you guys. I have also had to do my fair share of having the kids be “hurt” in order to make it better (NOTHING like you are doing though). It breaks your heart while you know it is the right thing.
What a brave girl your Serenity is. She has a lot to teach us.
@Vicki – I have been thinking the same thing. When she decides to do it, she takes her medicine so well. I might try a sticker chart and see what happens.
@Laura – I didn’t notice a difference, but she did watch intently everything that her Horse went through. Her port is under the skin. We numb it up with EMLA each time, but it does have to be re-poked whenever we go in. The alternative is to keep her “accessed” and have a tube coming out of her chest but with the other little kids around that didn’t seem like a good idea.
Thanks for asking about all of us. We are doing pretty well, overall.
@bek – Thank you for your kind words.