Infusing Love: Real Progress on the Road to Independence

Note: This is part two of a three part series. Click HERE to read part one.
Although my Benny is still not self-infusing, the last few months have been a positive journey for us! As noted in my last blog, my 12-year-old has been extremely anxious and stressed about doing his own needle stick. We made a family decision to take the pressure off, letting him get to the poke at his own pace.
We keep making real progress towards independence. Benny regularly takes every step in preparation for his infusion, and then he let’s us take over for the needle stick. In September, Benny started ordering his own factor. He makes himself a list of what he needs to order. I sit next to him as he dials, asking for the pharmacy, and then tells them what he needs and when we’d like it delivered. When factor arrives, he organizes it now and puts it away.  Last week I sat at the kitchen table and watched him organize his factor on the designated shelf. It made me smile. It was very much his way, not mine.  I started to offer suggestions, but I bit my tongue and let him do it his way! I was very proud.

In September, he impressed us with yet another step towards his independence.  I needed to be out of town for a long stretch – seven days.  I usually try to keep my trips to three days to avoid missing infusing days. Ben struggles with anyone else doing infusions, to the point of making himself physically ill on occasion.  Seven days was going to require support, so Benny and I sat down and discussed three options:

• We could have a home health nurse come in
• We could work with the school district nurse to do his infusions
• His dad could take him down to children’s hospital ER or the bleeding disorders clinic 30 minutes away while I was gone

We left the decision to Benny and after some thought, he decided that visiting the school nurse was his preferred choice. We did two practice runs at school the week before I left. We wanted to be sure that he would be comfortable and know what to expect.  While he was a little nervous, he slid into the new routine really well.  Nurse Julie, the school district nurse, was very good with him. After the first practice run, she actually emailed me later in the day asking me to check with Benny and see if there was anything she could do differently. She wanted his feedback and thanked me for entrusting her with Benny’s care. That little statement meant so much to me! It was sweet and made me very glad we’ve worked hard over the years to have a strong partnership with school.
Obviously I was nervous about leaving him. Benny has had bleeds while I’ve been traveling before and my husband has done the ER or clinic trips, but this was a planned infusion without me  — which almost never happens.
I did not truly realize how isolating it was to be the “only one” who could infuse Benny.. Families manage in different ways, but in our household, my husband has chosen not to participate in infusions. He is a caring father and husband in many other ways. Our extended family is not local, and while we’ve got some amazing friends nearby, we’re really on our own. I’ve essentially been exclusively solo during infusion time for 12 years.  The ER or bleeding disorders clinic has always been a fall back option, but that comes with so much stress of its own.. It is definitely a last resort emergency option.
When Nurse Julie successfully infused Ben at school that first practice run in September, my heart stopped for a second as the world shifted. A few blocks from home, at 6:55 a.m. before school started for the day, he suddenly wasn’t dependent on me alone– he had a network now. We’d never had that before. I had no idea how it would feel to have a fully confident and capable backup. My overwhelming sense of relief utterly stopped me in my tracks.  I didn’t want to embarrass Benny so I held the tears until I got to my car on the way home. Who would have imagined it would be a school nurse with a caring and positive attitude that would give Benny this little extra step in self-sufficiency!  While I was on my trip, she infused him several times and texted me after each one, letting me know all was fine. I heard they missed a vein and had to try a second time once or twice, but Benny and Nurse Julie handled it and were successful.  What was a very big deal became no big deal at all. Yep, my world shifted. What a gift!
This winter our goal has been to get comfortable with a butterfly needle.  Benny has been just touching his skin near a vein so far.  Not attempting a poke quite yet but just making the dive in more comfortable.  He is making real progress and building confidence a little bit at a time.

To learn techniques help their children cope with pain and anxiety, and how to empower them to voice their concerns, watch the below webinar called, Tackling Pain & Anxiety: Parents as Coaches for Coping. This webinar, presented by a pediatric nurse pain specialist and child life therapist from C.S. Mott Children’s Hospital at the University of Michigan, offers tried and true tips to help children manage pain and how to make infusions and other procedures less stressful for the entire family.

https://www.youtube.com/watch?v=9nsQk8DqVlc
Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (12) and Johnny (9).

*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.