Interesting news, just in...may given him too little IVIg

 So, it was supposed to be a slow day. No CBC while we let IVIg do it's thing. And maybe reports back from immunology on the two tests they are running.  Slow day with a visit from Lil...she'll be here soon.

And then a doctor walks in just now to tell me...they may have gotten the dosing wrong on the IVIg. And there went "slow" out the window.

Apparently communication to those prepping the dose was to base it on his body mass not weight, so it was given per/square inch of his body size, this is if I'm understanding correctly, as this was my first notice. I was told my head pediatrician would be in soon to discuss this situation with me.

The doctor delivering the news "wasn't sure" if it wasn't the right dose and informed me that my head hematologist is talking with the head pediatrician right now. I asked if my hematologist would be here and the answer was probably not 'till after she is done with clinic.

I'm going to need to know WHY they JUST NOW discovered it and HOW this dosing "miscommunication" happened. If the wrong dose really was given, then it means he may need to get more IVIg - another "treatment" which first starts with a iv of Benadryl and then a taste of Tylenol in the mouth, and then finally 2-3 hours of infusion and concern about reaction to it (even if the chance is super low, mommy worries)....and this means we are here more days...as they probably can't get it started today and won't take a CBC tomorrow.

Let's hope they come in smiling and laughing and saying that everything is fine, the right dose was given and today was just a miscommunication. 

Well, while I'm here typing and he is asleep...let me add today's notes:

1. His CBC yesterday was 220. I had that wrong - I think one doctor said it wrong to me, or I heard it wrong. But it was 220 and I'll take 220.

2. His infection at his belly button looks better now even than it did this morning - so, WONDERFUL progress on that end and that to me is a glimmer of light at the end of this hellish tunnel.

3. I have a more accurate, new "newt" number Arthur needs to reach in order to go home, the hemetolgist said she would like to see the neutrophil count at 1,000 (I had reported 500, but that number was given by an infectious disease specialists on the case - but the head hemo doc. is the one I trust and who decides the number he must have for discharge).

4. When we do leave he will have his CBC checked once a week here at the UVA clinic.

5. The test of his blood looking for my antibodies may come back on Friday...stay tuned. That will help us prove the diagnosis of alloimmune neutropenia.

6. They are trying to get some of Gwen's records and info from CHOP - they only have a small bit that was in the system. Why CHOP doesn't give everything when their patient is being seen somewhere else and why UVA doesn't ask for everything, I don't know...but we are hoping to get a better understanding of her newt levels after treatment and what her bone marrow biopsy reported (that again, will help with this diagnosis).

7. CHOP has a LOT to answer for... I have been planning to approach CHOP Hemotology at some point in the future as it was - in small bits of online research I've done since Gwen's passing, I started to realize we may not have been that well educated or informed about her neutrophil situation. I was starting to collect informaiton to disgest and form my questions so when I approached CHOP I was prepared with every question and source behind my questions. After this experience our eyes are wide open to just how much CHOP dropped the ball in helping us understand her neutropenia and all the implications and possibilities thereof. It's a long story, lot of details, but it has been hard to swallow -new 20/20 hindsight and something that really can't be ignored, we will need to address this with CHOP. So after this nightmare education/crash course in alloimmune neutropenia, I do believe, in my mind and heart what I've been suspecting for sometime... that it is a strong probability or at least a strong case can be made that what happened to Gwen had to do with her neutropenia...and prevention wasn't a long shot - it didn't have to go down the way it did.
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This link is just for my notes and anyone else interested...found this interesting - just showing how rare a condition and how new the knowledge is about how to treat it. Modern medicine is a gift from God! 
http://www.nature.com/pr/journal/v41/n5/full/pr19972057a.html