Daddy's Smile

Baby Reagan is continuing to do better. Monday they took her off the ventilator and the nitris oxide (which I have no idea why she was on to begin with). Her Mommy was able to hold her and, for the first time since her birth August 13, see her full face.

"She's got Chad's lips," Rachel reported. Just hearing the news choked up several members of my family, including me. Chad has turned into a sweet little daddy who's crazy about his precious daughter. Rachel's a darling, committed, loving Mom. We're very pleased with Reagan's progress.

Amanda is due to see a surgeon next week. They want to schedule one reconstructive surgery for fairly soon. And it begins again. Trina has had to put her life on hold to meet Amanda's needs. It's what a Mom does, but it can be hard to stall out. Trina was in her final quarter of school, doing her Internship in Medical Recording, when Amanda had her accident. She's talked with the Department Chair and was told that the curriculum has changed and she'll now have to take two more classes in order to graduate, which she can't do right now with pending surgeries.

And I have some news that I've been trying to process and which I found very upsetting. My ENT sent me to a Hematologist prior to surgery because of my blood-clotting disorders. He wanted an expert to clear me for surgery. The Hematologist, Dr. Limbaugh (like Rush) talked with me extensively about my lifestyle and history. Based on my lack of blood clots and the fact that I have been being treated incorrectly for my disorders, which should have led to more blood clotting, he voiced doubts that I really had these two genetic disorders. One is called MTHFR, the other is Factor II. He feared the doctor who tested me either used an incorrect test or read the results wrong, so he ordered a whole battery of blood tests. This was when they took the 16 vials of blood.

Don and I went back to see him for the results last Friday. I had really gotten my hopes up that I didn't really have these disorders. If not, there were at least 6 pills that I could stop taking daily and I wouldn't have to worry before trips, surgery, or about the genetic part being passed along to my children. This is the very reason I'm so cautious about being optimistic. I didn't realize how badly I wanted him to tell me it was all a mistake, until the appointment.

Not only DO I have Factor II, but he found 3 other genetic blood disorders that I also have - Factor VIII, Factor IX, and Factor XI, two of which are forms of hemophylia, but I had too much instead of too little, which results in over-clotting. MTHFR can only be diagnosed with two positive blood tests within 6 weeks of each other, so we scheduled me for one more blood test because the first one WAS positive. Might as well know for sure what I'm passing to my children and grandchildren.

I don't now why things like this hit me so hard. We had a very interesting conversation, asked all the questions we could think of at the time, then the doctor left the room. I asked Don to close the door and fell apart. He was shocked by my reaction. I was shocked by my reaction. I just felt like the bubble of my life had been burst.

The doctor was very careful to explain that he wasn't concerned, since he goes much more by medical history and less by tests and the only time I've had a clot was when I had a PIC line, which is a huge risk factor for clots all in and of itself. However, he did say that I need one miligram of folic acid daily and to continue taking my baby aspirin even though he had previously told me that the baby aspirin treated the wrong component of my blood. When I asked about that, he explained that the aspirin kept the platelets slick instead of sticky and perhaps it was keeping me from clotting if the other component (that is the one that tends to overclot in me) slid right off instead of sticking to the platelets. He also told me that for two weeks prior to any surgeries or plane trips, I need to take injectable blood thinners (Levonox, which are very painful injections and bruise me terribly) and, the real hard thing for me, I should not squat or kneel or do anything to cause pressure behind my knees and, when traveling by car, I should get out and walk every 1/2 hour.

He later said I could go a full hour before walking around, but even one hour is extreme. I attend meetings that last 2 - 3 hours. What about just sitting around visiting with a friend or watching a good movie with the family. Do I have to constantly be thinking about my need to move? The thought that this is something I'll always have to think about was just more than I could handle.

A good friend of mine who's a Physicians' Assistant knew about my appointment and asked me how it went. I told her, adding, "It's such a hassle!"

Her response: "It'll be more of a hassle if you don't do it, have a stroke, and spend the rest of your life sitting in a chair drooling."

Kind of puts things in perspective. But I'm still struggling to deal emotionally with the impact of possibly 5 genetic blood-clotting disorders. So I'm trying to stay busy, which doesn't require much effort, and let God deal with my emotions as I take care of my family and live responsibly. But prayers for healing sure wouldn't hurt right now.