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Wednesday, April 29, 2009

Niki's 1st bleed

Factor VII Deficiency.
FVII Deficiency.
Factor 7 Deficiency.
It was merely terminology until today.

Today started with Niki having her FIRST confirmed bleeding episode. Nice! Niki had her 2 month vaccinations yesterday and I thought everything went well until this morning. Lo and behold I saw a huge knot on Niki's thigh when I changed her morning diaper. I just don't get it. The injection room followed all of NHF's protocol and then some. Onto the medical stuff...

The shots were administered subcutaneous (instead of the standard intramuscular route) to prevent deep muscle bleeds. The nurse used the smallest gauge needle for each injection. She even applied pressure for five minutes on each injection site before proceeding to the next one. This pissed Niki off! The nurse had us hang out in the waiting room after she finished administering all THREE of Niki's shots. Niki was given 2 cold packs (one for each thigh) and we sat there for 15 minutes. The nurse then double checked each injection site for any signs of bleeding. There was no sign of any active bleeding so she sent us on our merry way.

I thought I had all bases covered. I took her in for her shots one hour after she had her factor. I even gave her Tylenol one hour prior to her injections to help soften the blow! She has the Broviac catheter so we're not supposed to give Tylenol if she spikes a fever. (Tylenol can potentially mask a central line infection.) I took a baseline temp before I administered the Tylenol just to be 100% sure. I watched Niki like a hawk for the rest of the day. I iced her thigh some more when we got home. She had no oozing, swelling, or redness after the shots. I checked the injection site at each diaper change. I even gave her one more dose of Tylenol! Meanwhile, Niki was all smiles and coos. By the end of the day she seemed prefectly fine. I thought we were in the clear. Everything was peachy-keen.

Flash forward to this morning and THE KNOT. I called her hematologist for instructions and confirmation of the bleed. I knew by her symptoms (redness, swelling, etc) that she had a bleed, but I wanted to be 100% sure. Today was a "no factor day", after all. It was entirely possible. I started to ice it while I waited to hear back from the office. Frankly, I didn't know what else to do. I didn't want to mess up! In all honesty, I think the damn thing bothered me more than it did her. I gently pressed on it a few times and she cooed at me. Whatta trooper.

One hour later and I still hadn't heard back from the office. I was growing anxious and debated on whether or not I should should just give her usual prophy dose anyway. After a few seconds of debating I decided to screw being a "bug-a-boo" and I called again. Turns out Niki's doc (I'll call her Dr. Awesome) and her nurse (Richard) were in a meeting. They just got out of said meeting when I called. Thankfully, the confirmed that she probably did indeed experience a bleed and recommeneded that I give her usual prophy dose. Yes! And...they recommended that I ice it. Double yes! It feels good to be right.

I continued to ice, watch, and palpate Niki's thigh for the rest of the day. I felt much better after I gave her factor, but I wasn't 100% satisfied. I doubt myself A LOT and called Dr. Awesome's office one more time before the end of clinic. Her lump wasn't shrinking and I just wanted to be sure that was normal. Richard was kind enough to re-reassure me that everything would be fine. I knew it would be, but I just needed to hear it from a professional. Yeah, I know. I'm a pest.

Despite today's bleeding episode I still managed to be super mom. I took the kids everywhere today! My arms are tired.

9:30am Anthony's dental appointment. Not as bad as one would think.

10:30am McDonald's breakfast and play time at the park. Take that, swine flu risk!

11:00am Shopping at Target! I am obviously mocking the swine flu!

12:00am Flower shop and visit Ethan. Had to clean his headstone. :-)

1:00pm District office to renew Kev's transfer. Yep, still had the kids with me!

1:45pm Picked up Kev from school. Now I had THREE kids to lug around.

2:00pm Back to the park. Watched out for pedophiles.

3:00pm Home: Baths. Snacks. (MacNCheese & Jello) Homework. Laundry. Made brownies.

7:00pm John came home. Dinner. Internet time!!!!

Whatta day. Sooo glad it's over.

Tuesday, April 28, 2009


I blog for me. I blog for my kids. I blog for my significant other. I even blog for you, dear reader! But mainly, I blog for me. Writing is theraputic. I love it, yet I have little time for it. That is the story of my life! The hands of the almighty clock rule my world. I often put "me time" on the back burner.

Nevertheless,let's see if I can at least keep this "blog thing" going. I need my therapy.

So...about me. That's toughy. Well, I have kids and soon-to-be husband. Kev is 5yrs, Anthony is 3 yrs, Ethan is in heaven waiting for me, and Niki is 2 months old. I've been with JD (my partner in crime) since we were 15 years old. And...that's all about me! No, that's not it, but sometimes it feels that way. It's hard to remember what I was like before I had a family. I've honestly kind of forgotten who I am. Don't get me wrong, I LOVE my current lifestyle. I love it so much that I barely remember who I was before it.

Nevertheless, I'll try my best to describe who I am. I suppose it is necessary since this blog will not keep me safe from strangers being electronic voyeurs. :)

Just read on and see for yourself.

Wednesday, April 1, 2009

What Factor VII Deficiency Means to Me...

My daughter has severe Factor VII Deficiency (a blood disorder similar to hemophilia). My son , who also had severe FVII Deficiency, passed away from a spontaneous CNS bleed in February 2008.

Aside from blogging about day-to-day life, I am also on a quest to find other people with Factor VII Deficiency. I would like to connect with other families dealing with this very rare bleeding disorder and use this blog as my outlet. If you or your child has this condition, please message me. If you don't have this condition but have questions, feel free to send me a message anyway.

You can also go here for more information:

About Factor VII Deficiency

In laymen's terms:Factor VII Deficiency is a rare bleeding disorder that hinders the blood's ability to clot. Bleed times are prolonged, but contrary to popular belief, a small cut is not life threatening. People do not bleed to death and with proper treatment, this disorder is completely managable. Thankfully, my daughter receives regular factor replacement therapy and is responding very well to her treatment regimen. :-)