Monday, June 9, 2008

Now we wait...

I wish I could say that everything went smoothly today...not when drawing blood is involved. Reagan's a difficult stick and she didn't disappoint today. Luckily her teeth didn't seem to be bothering her much today and overall she was in a pretty good mood. We had a long wait for our appt at the epilepsy clinic with the nurse practitioner that oversees the ketogenic diet (normally that would really irritate me, but I really like her, so I didn't mind too much). She examined Reagan, asked some questions, and then basically said that whatever changes we are going to make with diet are dependent on the results of some bloodwork that we would need to get done. More specifically, they needed to see Reagan's levels of beta-hydroxybutyrate. If they are high (which is what we are expecting), then that would indicate that she's in deep ketosis which could be causing her to have more seizures (although most kids do better the more ketotic they are). In which case we would reduce the ratio of the diet (from 4:1 to potentially 3:1) and hopefully see some improvement. So after the appt, we went to get the blood drawn (they don't do it in the clinic, they send you down to the pathology lab to let the phlebotomists to do it). I warned them ahead of time that we needed someone experienced because Reagan is such a difficult draw. Of course the first woman that attempted it failed. She must have moved the needle around in Reagan's arm for 5minutes or so trying to locate the vein (which she never found). She even called in someone else who gave it a try and couldn't find it either. After that whole fiasco, I told them that I wanted the one woman who has been successful with Reagan in the past (who was at lunch). We waited another 30min until she came back from lunch and even using the arm that the other people couldn't find a vein in, she got it on the first stick! No problem! From now on I am DEMANDING her every time. Normally I tell them I want her and they just poo poo me and tell me she's busy. But I'm putting my foot down now. No one else touches Reagan! Anyway, long story short...we're still waiting to hear back on the results. I'm hoping we'll know something by tomorrow so we can change the diet accordingly. I'm so sick of these seizures.





2 comments:

teresa said...

I totally agree with you on using the same nurse for the blood draw. Reagan has to deal with so much so that does not need to be added. She looks so pretty in the picture. I love her hair.
Teresa

Dawson said...

She looks great!! We are hopeful that the change in the diet will give her the freedom that she deserves. God bless you guys