We are still on the road to self-infusion, and it’s been a long-term journey to his independence. Benny, my 13-year-old who has severe hemophilia is stressed about doing his own needle stick. He is a particularly anxious kid and determinedly marches to his own beat, so letting him infuse at his own pace is the best option for him. With his knowledge and permission, I’ve shared his journey in a previous post.
We had a little hiccup last October that almost set us back at Benny’s hemophilia clinic visit. My husband and I have had tremendous respect and loyalty to our HTC, and feel that Benny has received great care there. We still feel that way, but our last visit had a twist that put my inner momma bear into high gear as an advocate for my child.
To prepare him for adulthood and as a tween, it is good for him to dialog directly with his clinicians and answer their questions. When he turned 12, it is required that he gives consent to participate in research projects.
This visit, however, was all about self-infusion. As his primary caregiver, I was unaware walking into clinic that this was the intent. In retrospect, if I had only had some pre-warning so I could prepare Benny, the day could have resulted in much more positive outcomes. There has been some natural attrition at his clinic and virtually all of the clinicians and support staff we saw were new to Benny. I suspect that the team didn’t really realize this and were just doing business as usual. The resounding theme was that Benny should be infusing and he heard it from everyone that he wasn’t. I mean everyone – the hematologist spent the majority of his time with Benny prompting him that it was time. The nurse, the social worker, the financial counselor, and, heck, they even sent in a psychologist to spend time walking Benny through every step of an infusion.
We’re at that sometimes awkward step in Benny’s life where he is getting old enough that the parent takes a sideline in clinic visits and he is the one questions are directed too. I understand and respect that. However, self-infusion is the big thing we’re trying desperately to get to as a family and it IS a family issue. Benny needs independence, and my husband and I dream of the day he has it. We frankly don’t want anything to muck up the progress for our family!
Thus, I found myself repeatedly and respectfully interrupting each clinician that came in to visit in order to offer that Benny is a whole person that includes his body, mind, and spirit. Beyond his hemophilia, he’s a really, really anxious kid and we are very seriously and actively working toward specific progress steps we had identified as a family to get to the self-infusion milestone we all want.
It was honestly like viewing a train wreck in slow motion that day. We could see him close up as the persistent push to self-infuse went on and on… by strangers.
This momma bear was upset. We were making such progress at home and actually laughing and joking about infusing and then this train rolls over our progress threatening the trust we had. I believe in team and partnership and found the experience frustratingly filled with “if only” thoughts. If only someone had alerted me first, I could have prepared Benny going in. If only the clinicians had taken the time to listen and process what I shared when they came into Benny’s exam room. If only the clinicians had stopped and discussed with each other before coming in again and again with the same push self-infusion message.
I ultimately told him that his dad and I were okay with his progress and not to stress out. We believe in him and he will do this on his time.
Since the appointment, I’ve reflected on the entire situation a great deal. I’m glad the HTC wants Benny to be self-infusing. He does need to do this, and we all need to keep nudging him along. However, I’ve also given myself permission that as his primary caregiver and the person that knows him best, I have a responsibility as his advocate to push back on things that concern me about his care. I deeply respect his clinicians and we rely on their expertise and guidance for much of Benny’s care, but I won’t feel guilty about asking questions or pushing back for something that seems off for Benny. He is going to self-infuse when he is ready, there is no doubt!
Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (13) and Johnny (11).
*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