With every down there's an UP

Well, after I got off the phone with nurse Julie this morning, I was quite upset. Knowing that Ayden will have this spinal tap every other day, without any sort of freezing was really upsetting to me. The spinal tap has so many benefits and makes him feel much better after it’s done, but to think about the amount of pain that the little guy is in for the time the needle is inserted hurts me so much….

I just got a phone call from Julie. I guess she sensed that I was upset after I got off the phone with her and she called to update me.

The spinal tap today went really well. After julie spoke with m e on the phone, she talked to the doctors about doing some sort of local anesthetic so that he would not be so uncomfortable. They tried it and Ayden was fine!

So today they removed 3.5 milliliters of fluid. And I also found out that the first time they did the spinal tap, they removed 11.5 milliliters of fluid and not the 2.5 that we thought!

Every other day they will do the tap, with freezing and some sucrose.

Ayden is doing much better now, his eyes are open and he is more alert. I guess when the fluid builds up the pressure in his head affects all aspects of his body from breathing to heart rate to just his well being. Julie the nurse said it’s like night and day from before to after the tap.

It was so kind of her to call and tell me some good news. Now I don’t mind that he gets the tap every other day…he will not feel the pain of the tap, but will also feel better afterward.

Oh, also found out that they have up’d his feedings to 8 milliliters every hour and a half and he is doing well with that so far!!!

What an up and down day this has been…