Back in February Maddox’s provider suggested we try a new medicine. This medicine would allow him to be poked subcutaneously once a week, and with no need of factor replacement unless there is an emergency.
After about six months on the new medication, we went in for Maddox’s yearly appointment, and removing his port was brought up – since he’s been responding to the new treatment so well, the doctor suggested we take his port out. We don’t use the port much more than to just flush it once a month. It was decided that the port should come out in October.Â But Maddox’s port is my safety net! I’m PETRIFIED to let it go. I’m so scared for him to be poked with an IV if there’s an emergency verses his port.
Maddox had his port placed when he was 9 months old, and we have had a sense of security in place since then. He became accustomed to the everyday port pokes and he didn’t mind any part of the process. He has been amazing.
Since starting on the new medicine, Maddox has become more vocal about injections. Instead of just sitting still like he did with infusions in his port, he now will squirm, and say, “I don’t want my hemophilia.” For me, it’s hard enough emotionally to give an almost 3-year-old a shot when he is squirming, but to add the constant crying for “no philia” breaks my heart.
Our response is always the same: “We wish you didn’t have to do this Maddox, but you need to.” I think when Maddox wasn’t so vocal it was different. Now that he’s getting older, I want to make sure that he understands why he’s getting the medicine, and how far he’s come since he was a baby. Â I think I keep Maddox in a “non-hemophiliac bubble”- meaning that at times I play it off that he’s completely fine and doesn’t have hemophilia. Since he’s gotten older and he can verbalize his feelings now I have to rethink my conversations with him. I want him to know that he needs this medicine to be the typical “Maddog” that he’s always been. In my eyes nothing is going to hold him back. He’s quite remarkable.
As Maddox gets older, I want him to realize that he needs his medicine and to practice safety when he’s out and about. I think I have a few years to work on that with him though.Maddox is one tough cookie, and continues to amaze us by his strength, ability to try new things, and his daring personality. Over time I think Maddox will become more adjusted to his new routine. For now, we will continue with our little words that hopefully are helping him to understand little by little with each poke.
Heather lives in Massachusetts with her husband, Shane, and her young sons, Logan and Maddox.
*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.
Word From Washington