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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

I鈥檝e seen a recurring question in the bleeding disorders community a lot in the past few weeks:, 鈥淲ill I ever get used to sticking/poking my kid?鈥 The answer is yes and no. Think about it — there is nothing normal about sticking your child with an IV needle or accessing their port to infuse them once, twice, or multiple times a week. I remember past trips to the playground with my son and hearing other moms talking about how hard it was for their child to get their immunization shots. I laughed to myself while thinking, 鈥淎t least you don鈥檛 have to give your kid an IV infusion.鈥 Even to this day, I still roll my eyes when I hear the same conversations.

Jackson was given his first dose of factor when he was three days old after having a soft tissue head bleed from being delivered. From then on he was on prophy at least once a week, which increased as he got older to three times a week. Early on I remember thinking as his care team infused him at the hospital 鈥渢his is now our life.鈥 It was a lot for me to deal with. On the drive home I would be in a dark place while my son was either peacefully napping or sweetly cooing; he had already forgotten about it.

As he reached his toddler years, infusions became his routine. We would drive to the HTC and Jackson would walk into the hospital like he owned the place. We got to know the check-in staff and all the nurses. He had everyone wrapped around his finger! Child Life knew what toys he preferred and would reserve them in a special place for him. The nurses even made a 鈥渇actor book鈥 for him that went through each step so he could look at it during infusion time and know what was coming. It was a way for him to understand why we were 鈥渉urting鈥 him, yet at times he still kicked and screamed.

Jen_Moms BlogIn his pre-school years we transitioned to a combination of home care and HTC visits. The home visits were liberating now that we only had to drive down to the HTC once a week. We had good pokes and bad pokes鈥nd that still happens. We worked as a team: the home health care nurse, my husband, and I. The nurse would do the stick, I would hold, sometimes restrain, Jackson, and Joe would play the role of distracter and factor administrator. My husband did some pretty funny things back then with bubbles, songs, dances, and funny faces! I鈥檓 not sure who he entertained more鈥he nurse or Jackson!

As Jackson got ready to transition into all day Kindergarten, my husband and I became the infusers. This has proven to be challenging as well. Jackson is now older and knows his routine so he is able to sit very carefully during his infusion. Sometimes he shows interest in mixing his factor, drawing up the syringe, and pushing his factor into the IV. We breeze through the process as a team and it鈥檚 done. Then there are times that, for whatever reason, it鈥檚 just a bad poke, the times when the first attempt doesn鈥檛 go well.聽 The tears flow and he asks why he has to have hemophilia. I hate this part. He doesn鈥檛 want to hear about genetics or how someone gets hemophilia. He wants to know why he has to get poked. It鈥檚 like getting punched in the gut. I put on a happy face, as does my husband, and we reassure him that it鈥檚 okay, that he is a brave boy. We tell him that we hate it too, but he needs to get his medicine to go play as it protects him. We give him a juice box, then we all take a breath and he says okay. The second stick usually goes smoother and before you know it he is off and running — but not before he thanks us. Yes, he thanks us. I鈥檓 positive it鈥檚 not for hurting him or sticking him but for taking care of him; for showing empathy for what he goes through and for loving him.\

The question I keep hearing in the community is not a new one; it鈥檚 probably been asked, or at least thought, by every parent who鈥檚 had to infuse their聽child. Will I ever get used to poking my son?聽 Yes and No; but it鈥檚 what we do and what needs to be done for him to live a healthy life.

Good luck to you in your own journey and know that others get it and we are supporting your rough days and rejoicing in your good days.

Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (20), Nora (14) and Jackson (7).


*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 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.

 

 

 

 

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