Still Waiting...

I was hoping to have more information to share before I updated, but the neurologist did not return my call today. So far, this is how the week has went. On Monday, the neurologist did call and said that we would go ahead and do the sedation for Josie's next blood draw. She said she would have her nurse set it up and then call me. The next morning, Tuesday, the nurse called and told me that she called both St Vincent (Peyton Manning's) Children's Hospital and Riley Hospital and that both of them told her that they do not do sedation to draw labs. She wanted me to call and find out who the nurse was that suggested it in the first place. It turned out that it was a transport nurse and not a regular ER nurse and that she just simply gave me wrong information. I ended up calling both hospital's outpatient labs, both ERs, and Josie's regular doctor trying to figure out what my options were. Each call ended up with me in tears because no one had an answer for me. The best solution I got was from the Riley ER charge nurse, who said that she was "confident" that she could get the blood with an arterial stick (from an artery) and if she didn't get it, then she would have an anesthesiologist try (without any kind of sedation though). The arterial stick is a lot more painful, I've read, and it kills me to think about putting Josie through that again without knowing for sure that it will even work. She has been stuck 9 times now (12 if you count the times at the initial ER visit) and every time, the person doing was "confident they were going to get it".

So today, Wednesday, I called back Josie's neurologist to see what she thought but I did not get a call back yet. I know she is planning on putting me in touch with a Endocrinologist who is a specialist in metabolic disorders and can hopefully give me more insight as to what other symptoms I should even be looking for. So far, the only symptoms Josie has are her macrocephaly (large head), those two little seizures she had at Christmas, and a slightly elevated glycine level in her urine. She still has the funny little blinking episodes (I'm not sure if I've even posted about them) but I have not yet caught one on camera to be able to show the neurologist. They are just really quick, little hard blinks that she does on occasion that I normally would think was nothing, but I would like the doctor to see it just in case it does indicate something. Otherwise, Josie is perfectly normal. She is super smart, has an amazing vocabulary, is strong, happy, and everything you would see in a perfectly healthy child. I do not personally believe that the labs will show anything otherwise, but I would sure love to have those labs just to prove it!

Oh and also, we are redoing the urinalysis. However, we have to take Josie off of her "Next Step" formula for a week first and then, once the sample is turned in, it takes 6-8 weeks for the test to work. So it is an option that we just wait another 2 months and decide what to do when that comes back.

I will be sure to update if anything changes!