So Emily has had her new port accessed twice now, once at the Cancer Center two weeks ago and then again today, at home. And neither she nor I are sure of what we think so far.
The first access went really well. We put on the numbing cream and waited 30 minutes while it worked its magic, then Rachel, our wonderful Child Life Specialist, distracted Emily with bubbles while the nurse pushed the needle in. Supposedly pushing the needle in is somewhat like pushing a thumbtack into a cork board. With the numbing cream, Emily shouldn’t have felt the needle prick, but she definitely felt the pressure of the push and cried a bit. I’m sure this is a feeling she’ll get used to though. We had a long schedule that day -spinal tap w/intrathecal chemo, IV chemo, and IV antibiotic, so the needle had to be secured into place with gauze and tape. Besides being very protective of the getup, Emily didn’t seem to mind it. At the end of the almost 8 hour day though, she was Not. Happy. to have the tape removed in order to be de-accessed. It took myself, the Child Life Specialist, and two nurses to hold her arms and legs down and keep her body stretched out enough to remove the whole thing. It took forever because the nurse couldn’t just pull the tape off, or the needle would have been yanked out with it, plus Emily was fighting the whole time. It was awful. By the end, I was almost crying with Emily, and the Child Life Specialist had to give me a hug. The whole drive home I berated myself for not realizing this would be a part of having a Port. Emily HATES having the tape removed -it’s the same kind she wore over her Broviac, and we had to remove it twice a week to change her dressing. My consolation though, is she should only need the tape once or twice a month, so we won’t be taking it off twice a week anymore. And I’m sure she’ll get used to it like she got used to the Broviac dressing changes.
Today our Home Health Nurse came out to draw labs, so Emily’s port was accessed a second time. I rubbed the cream on and taped it up about 45 minutes before Anne arrived, and Emily instantly started cringing into herself saying, “I can’t do this. I can’t do this.” Oh my gosh. I cuddled her in my lap and we talked about how brave she is and how lovely it is to be able to take baths (every day!), and how it’s a little scary, but it doesn’t really hurt. When Anne took the tape off, I had to hold Emily down. And then Anne had to clean the skin and insert the needle. Emily cried and cried. But there was no need to tape the needle down, and the blood drew quickly, so Anne finished, de-accessed the port, and put a band-aid on. And after just a bit, Emily was okay again. She looked in my eyes and said it didn’t hurt but it “was very scary.” Then she hopped off my lap and went outside to play!
She really is very, very brave, and such a fighter! Every day I thank God for giving her such a feisty, spunky spirit. But she could use extra prayers over the next month or so, as she gets used to the new procedure. Please pray that she really won’t experience pain and that the accesses and de-accesses will get less and less scary. And really, a little bit of nerves over a lab draw are nothing when compared to what she went through last year!!
The truly lovely thing about having a Port instead of a Broviac, is that Emily can take a bath anytime she wants. And she wants one every day! She and Sophia regularly hop in the “ocean” with their dolls and animals and play for an hour or more. Who needs a pool?
The video I’m leaving you with is of Emily getting ready for church last week. She’s enjoying having hair again.