After Amber’s diagnosis of severe Hemophilia A, we attended regular check ups at our Hemophilia Treatment Center (HTC). They told since she was still an infant that we were in a “honeymoon phase” where as long as there were no bleeds or traumas she was okay without factor replacement for now. Between the age of 2 weeks and 18 months, I called the HTC for every bump and we ran to the ER and pediatrician several times.
November 29th 2014 at a friends house, during my husbands first deployment (of course), I noticed our sweet, happy toddler limping. I pulled up her pant leg and behind her knee and in her calf was blue. She would not or could not straighten her leg. I panicked, my heart sank. We grabbed some ice packs and got in the car. First stop- home to grab factor meds, second stop- local ER. I held down a screaming Amber for 5 unsuccessful vein sticks.. and a 6th that was partially successful in getting some factor in before the vein blew. We then drove to Children’s Healthcare of Atlanta at Egleston (2 hours from us) and the plan was to stay overnight to monitor the bleed and have the pediatric phlebotomist do her infusions.
Looking back, here is what I so wish I would have known:
1. Hemophilia is rare! Most everyday doctors and nurses are not going to have much idea what is really involved in living and treating hemophilia daily. Most doctors try to define it for me like I don’t already know, because they themselves, just don’t know. They don’t deal with it regularly.. it’s rare.
I went into the emergency room, told the nurses she need her factor and handed them the box of medicine. They pulled out the instruction pamphlet and tried to figure out what to do. I wish I would have known how to mix the meds for them, I wish I would have known to tell them they can infuse the medicine through the butterfly needle, no need to set up an IV right now, just get the factor in!
2. Hemophilia is serious. Now this I knew, but somehow I didn’t grasp the rules of when to panic and when to just treat as soon as possible. Amber’s first joint bleed, I panicked, and I did not really need to. Head bumps, belly trauma, bloody stool or urine, neck trauma=very serious. Joint bleed and other minor bumps and scrapes= treat, rest , ice, compression, elevation.
New hemophilia parents, I urge you to have your HTC or home health nurses show you how to mix the meds and have an EXACT detailed plan for different injuries that occur. I really just thought we could go to the doctor and they would know. That is not the case unless you live close to your HTC and can go there.
Now here is a cool story of how God works: we went through that trauma, and God used it for our good. The last ER nurse to stick Amber was happy at her ER job. A week later she got a phone call from a friend asking her if she wanted a home health job. She said no and that she wasn’t looking for anything. Then the friend said Amber’s name.. and she was shocked. The ER nurse accepted the job and became one of our first home health nurses, who later became a great friend and a support person that we could not have done this journey without. Although we are extremely independent with our infusions now, there are still many days I call her and she’s there to help. And here’s the really really cool part: now people drive from all around our area, to come to our local ER because the staff there IS KNOWLEDGABLE, and they have a nurse on staff that IS a Hemo nurse! Did you get goosebumps? Because man that makes everything we went through worth it.
Romans 8:28- AND WE KNOW THAT ALL THINGS WORK TOGETHER FOR THE GOOD OF THOSE WHO LOVE GOD, WHO ARE CALLED ACCORDING TO HIS PURPOSE,
Shout out to Lindsey, Intouch pharmacy, and Valerie. ❤