Infusing Love: Careful What You Say

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
I had a “Hemo Mom” moment of synchronicity earlier this summer.
In my last Infusing Love post, “Superheroes Need Rest Too,” I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four  -month-old twin siblings. Marques eventually had to have his port taken out after an unsuccessful attempt to clear the infection. I had submitted the blog post weeks before it was published. But the same day it was posted, one of the twins, Laithan, was released from the hospital because of a port infection and we were doing antibiotics every eight hours to make sure it was gone.
While in the hospital with Laithan all I could think was, “Why did I write about Marques’ port infections?! I conjured up the port infection monster!” When I submitted the blog post Laithan was fine. We were enjoying our family Memorial Day weekend barbecue and he was running and playing with his cousin all afternoon, when suddenly at about 9:00 pm Laithan was laying on the couch under a blanket, yet his cousins were still going. He felt very warm and I took his temperature and it was 102.2!  I went into denial mode of a possible port infection and didn’t call the hematologist like a good Hemo Mom, but the possibility kept me up all night. The next day his fever dropped to just over 100, but I contacted his hematologist anyway who advised me to bring him into the ER to get a culture. In the ER his sister started running a fever of 102, so I felt vindicated and was positive the culture was going to be negative. I was thinking, “No way, it’s a port infection if his twin sister has a fever now too.” Boy, was I wrong! The doctor’s office called me the next morning to alert me that his culture was positive. I packed our bags for our hospital stay to fight the port infection monster I had conjured up in writing my blog post!
red_shirt_infusing.jpgIt was almost six years to the day that I had referred to in the blog, and I was back in the hospital with Laithan hoping the cultures stay clear. This time, though, I’m a lot wiser! I started talking to Laithan about practicing peripheral sticks and I used that hospital stay as an example for him. I knew I could make the port infection monster powerless if I could get Laithan to allow me to do peripheral sticks while his port was still in to help with the transition. We agreed that every other prophy day we would switch between peripheral and his port.
After a few weeks, I started offering Laithan a treat if he would allow me to do the peripheral sticks on port days. He still says he’s scared, but it has been three weeks and we haven’t used the port at all! A few weeks went by and I needed to flush the port since we haven’t used it and he was actually nervous about me going into his port again!
I know that I am not going to conjure up the port infection monster again because I beat him! I can’t wait to schedule the surgery to remove the port. Writing about Marques’ port infection from six years ago and then Laithan popping up with a port infection was synchronicity! However, I used it to give Laithan a better experience than Marques and control how we were transitioning from port to vein for factor infusions.
Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (17), Marques (13), Laithan and Layla (6).

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.