Prophy Week #3

I am entirely certain that we won’t be seeing our nurse again. Yesterday I sat around waiting to hear from her about what time she would be arriving to do Anthony’s infusion, when she didn’t show I could only assume she would be showing up at the same time as the previous week, 6:30am. Of course that wasn’t the case and at around 9:30 I got a phone call from her saying, “We changed your time to Thursday, didn’t anyone tell you?” WTH?! That’s not how home care works, we are supposed to agree on a time not they change it and don’t tell me. What would have happened if I had plans to, you know, not be home! on Thursday? Then again this is the same woman who wanted to sedate my son before his infusions with Benedryl so what’s done is done I suppose. Today we had infusions done in the clinic and while he wasn’t happy about being there his natural fight or flight instincts didn’t kick in to quite the magnitude that they have been. He cried, he kicked a little, he did not however wrench his arm from my grasp causing the needle to dislodge and blood to pool up on him. The emla cream did help to numb him and he really didn’t feel a thing. He was just upset, which to me is entirely understandable given his last 2 experiences with prophylaxis. Here’s to hoping my little trooper has a better week next  week. I am so happy that we are figuring this all out together and that I have the wonderful Miss Leslie to help me through it all. By the by the big boy we all know and love had his first day of “school”!!! He adores it and cannot wait to go back. Don’t know when it was that my guy got so grown up but I guess it’s time I got used to it.


4 thoughts on “Prophy Week #3

  1. Hi. Just noticed your tweet and decided to follow to your blog. I am the grandmother of twin 5 year old boys with Hemophilia A Severe. They have lived with me since they were 6 months old. We had the same problems with a nurse showing up. We also didn’t like being dependent on someone else for their factor. Also had some nightmare experiences at the ER. My daughter began home infusing when they were 2 and I learned as well so that I could be a backup. While we had some scarry times in the beginning it has become old hat. We are now free to go anywhere and just bring the infusion gear with us. Have you considered learning to do this yourself? Given some good teaching you can become an expert. It really is funny because there have been times when we could get vein access while the nurses couldn’t. Let me know if you need information concerning this or contact your factor manufacturers rep. They usually have everything you need to learn the art.

    • I do plan on learning. Actually I’m going to nursing schoo lso it would be kinda silly if I didn’t do it myself eventually. He is having a hard time adjusting to doing this at home and getting it so often. Before he would tell me “I got a bruise, I need medicine. We go to the Doctor’s House now?” Now it’s something entirely different for him. Long story short I don’t want to learn to do it until he’s comfortable with having it done. We’ll get there but slow and steady until it becaomes routine. We have an amazing nurse that works with us from the pharmacy. She has come to the last 2 infusions and will be the one who teaches me to do it. She’s been around since Anthony was a few months old and we are immensly lucky to have her. Nightmare experiences in the ER are a way of life lol I’m glad we are somewhat passed all that now. I HATE depending on other people for factor but I’m learning to be patient. I’m so glad to have you following along. I can’t imagine having twin boys! It’s certainly a learning curve and at times frustrating but things get easier. So nice that you have been able to help your daughter, I found that the absolute best thing is a good solid support system. Makes you feel like you aren’t crazy or helpless or alone. It’s nice to just be able to say “I can’t do this right now.” And have someone there to carry the burden for a moment. Is hemophilia a genetic thing in your family? It is in mine.

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