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Thursday, July 7, 2011

Boy Scout Motto - Be Prepared

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!

It passed!

Today was a crazy day. My baby boy woke up with over 100 degree fever and it was raining outside. I ran into work briefly, but came home to be with Trenton. As we sat resting in the basement, I heard my phone ring.

"I have confirmation that your bill passed, " Jay Bryant-Wimp. I was so excited. The Gateway Hemophilia Chapter and The Midwest Hemophilia Assocation have worked for years to get the Standards of Care for People With Bleeding Disorders Passed. This year I feel I gave it my all. Mary (from St. Louis) had given it her all for two years and couldn't make the drive this year due to work. (She still worked on getting the bill passed from home . . don't you worry) I felt like it was on me to get this bill through.

So many friends, family, and people from the Hemophilia Community helped get this bill passed. I had classmates from Warsaw that wrote letters to the Legislators. (These are people that I haven't spoken to in over 10 years!) Many people gave up a day or days of work to come to Jefferson City. Many people brought their families from 100's of miles away to talk to their Legislators.

I am excited that Missouri will now have something "on the books". There are going to be many changes in the coming years and it will help to have this bill.

I'll post more details about the bill soon!