The Boy Scout motto is "Be Prepared". I was a Girl Scout for over 10 years . . . not a Boy Scout. When Trenton fell recently I was "not prepared".
When Trenton was first born I was your typical paranoid Hemo Mom. (even though I said I wouldn't be) I had a medical alert bracelet on him at all times and one on the car seat. I carried the factor in a cooler with us on any trip over 30 minutes away. I had several ice packs in the diaper bags at all times. I had medical information on the fridge. I had medical information in the diaper bag . . even the travel letter.
Fast forward almost three years .. . .
Trenton had a horrible fall recently. We were crossing a parking lot and he did a face plant. He didn't put his hands up to catch himself. His nose and lip took the impact. There was more blood coming out of my child's nose than you would ever want to see. His cute white frog t-shirt was a throw-away within two minutes.
I reached in the diaper bag to find one ice pack. . . that was so old that is didn't work! After we controlled the bleeding I tried to call the treatment center. I didn't have the correct number in my phone and I didn't have the nurse's pager number. After calling the hospital's main number and waiting on hold I was able to talk to the nurse.
We went home and dosed with Amicar for the mouth bleed. After I gave Trenton the dose I realized that it was expired Amicar! (Do you see where I am going with the "not prepared")
I can write another three paragraphs about what went wrong, but I won't. Here are my suggestions for the future:
If you have a child with mild Hemophilia, always be prepared. Don't become so relaxed that you think nothing will happen to your child. You never know when you will be in a car accident, or have a silly fall in the parking lot.
*Check your factor and Amicar often. If you have a wall calendar, circle the expiration date on the calendar and maybe the date a month before so that you can have some on hand.
*Always have your child wear their medical alert bracelet! If your son is young like mine, they won't be able to tell a paramedic that they have Hemophilia in a medical emergency.
*Keep your HTC's numbers close. I had one number in my phone, but not the right one. I now carry our nurses' business card in my purse as well.
*Have all emergency numbers posted clearly in your house. Our numbers are on a dry erase board on the fridge. I realized that I hadn't updated our nurses' name and that my mother-in-laws number was no longer visible.
*We still take factor on longer trips. I would recommend doing the same. Check the NHF website before you go on a trip to find out if there will be an HTC close by.
Please feel free to post more tips below!
Remember . . . Always Be Prepared!
2 comments:
WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
I have been a patient of hemophilia . I had tried a lot of anti viral med prescribed to me by doctors over the years but I could not see any improvements in my symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from hemophilia,quickly i contacted him and he prepared a herbal medication for me which i received and used as instructed. After few weeks the improvement were very visible. the pain and tightness in the joints stopped and the sores started to heal. I would recommend this to all my friends,families,around the globe suffering from hemophilia.you can contact him through his email on drwilliams098765@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS
Having haemophilia A this means that his body, his immune system, fights off the medicine – the infused factor VIII. The alternative clotting factors that we used to control bleeding were much less effective. His medical condition was heart broken. Despite our visit to several doctors his health wasn't getting better. He was subjected to different medications, by many doctors for treatment without the assurance of having a permanent cure. Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. Suspicion that something wasn’t right began when he was 6 months old due to the heavy amount of bruising which started showing up all over his legs. As a parent, I would love to fix things and make everything better. Fortunately, there have been other positive alternative (Herbal Medicine) though few people doesn't know the challenges of living with hemophilia. If your child is having same problem, do not expose him/her to more danger, use a herbal remedy that is safe and effective. Contact him directly for more info with his email address: sharmash116@gmail.com
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