I didn't find out a specific number for Morgan's neutrophil level on Friday but the nurse said the percentage indicated no change. HOWEVER, I talked to Morgan's previous pediatrician yesterday afternoon. It turns out that Morgan has had normal neutraphil levels in the past from previous bloodwork on at least 3 different occasions (over 500). She said it seemed to go up and down. On Tuesday, the hematologist said that the Severe Congenital Neutropenia is when her levels from birth are not capable of going over 500. So, he hasn't confirmed it, but from what he told us Tuesday, and everything I have read, it is pretty safe to assume that Morgan does not have the severe neutropenia since she has had normal levels in the past. This is of course a HUGE answer to prayer and I definitely am breathing easier!
I would be remiss to tell you about this experience so far if I didn't tell you how God has embraced us as we wait on test results. The morning after we came back from Temple, I felt like the wind had been knocked out of me. I spent some time in the Word and God was faithful to show me that Morgan will make it through this ok, that he has big plans for her and that good things will come of this! He didn't need to tell me that but He has been so faithful to comfort me through this process.
Please continue to keep us in your prayers. Pray that Morgan does not get sick during the next four weeks of blood draws, bc if her fever goes over 101.0, she has to go to the hospital in Temple. Pray that God comforts Morgan during the blood draws which are going to be in her arm, instead of doing the finger prick. Also, keep Jeremy and I in your prayers as we need to be strong for her and trust in Him. Thank you so much for lifting us up!
Here is a summary of the different kinds of neutropenia by most common first:
1. Transient Neutropenia - Not Inherited. The neutrophil levels stay low for a certain amount of time and can be treated with injections before it goes away on its own.
2. Autoimmune Neutropenia or Benign Chronic Neutropenia - Not Inherited. This is where the blood's antibodies are actually attacking each other. The neutrophil levels stay low for a certain amount of time and can be treated with injections before it goes away on its own, usually before age 3-5.
3. Cyclic Neutropenia - Happens in 1-2/million. Inherited. My understanding is that she has it all her life but it tapers significantly at puberty. This is where every 21 days she will have a 3-7 day drop in her neutrophil level where she will be susceptible to infection. The injections make the amplitude of the sin wave higher and the waves shorter and more frequent. With the injections, she would still have lows but she would recover faster than if she didn't have injections. This is the one think she has based on her symptoms and the fact that my mom and I were in the hospital a lot as kids. http://www.medicine.wisc.edu/~williams/cyclicneutropenia.pdf
4. Severe Congenital Neutropenia - Inherited. 1/million. Neutrophils don't go over 500 from birth. We don't need to worry about this one. :)
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