February 11, 2011

God just continues to heal my son and bless my family through Grayson's illness. I have so much to update you on because I realized my last real update on Grayson's condition was only a day or two after we left the hospital. It has been ten days since we've been discharged. I actually had to sit here just now and add up the days because it feels like we've been here a month already. The last time I gave an update Grayson was receiving NG feeds 6 times a day, had began nursing again, was on IV fluids for 10 hours a day (overnight) and taking 14 different medications at all different times of the day. In just 10 days Grayson has picked up his eating habits (thank you steroids), pulled out his own NG tube but is nursing/eating well enough to leave it out. He was nursing when he pulled it out and it was so fast neither of us realized what happened at first. He was holding the whole tube and tape in his hands and looked up at me with a sort-of puzzled look which I am sure mirrored mine and then I realized what he was holding and I laughed at him which made him smile. It was a triumphant smile like-"I don't need this thing anymore mom!" I called the doctors but they said as long as he was nursing and eating well and his weight didn't drop significantly that we could leave it out. Well my little chunky monkey has kept his weight right around 12kg (26-27lbs). He did that about 4 days after we were home and it started a chain reaction. Every clinic visit we would hear that we could reduce or drop one of his medications.

Today we went and we are down to only 6 meds per day! Plus the steroids are down to a low enough dose that we should be able to stop them on Monday. We were supposed to be able to stop them today but my husband foiled that plan. Tom came to visit Wednesday and moved my car to a better spot right in front of the building (very sweet of him). He stuck my keys in his pocket and took them home to Westminster (not so sweet of him). Of course it was an accident and I didn't realize until I was walking out the door with baby in arms that my keys were not in my purse. We had to draw a cortisol level by 8:30am in order to make sure his body was making steroids naturally before we completely stopped them. Did you know that our bodies naturally make steroids every morning? After 9am the level drawn would not be as accurate so we had to reschedule that lab for Monday morning. No big deal but it means we continue with steroids over the weekend.

We still made our clinic appointment this morning and the doctors are very, very impressed with Grayson's progress. His skin is looking so much better. He only has a little bit of peeling on his hands and feet and the rest of his skin is pretty much back to it's normal milky whiteness.

I am going to write another post because I started writing this one days ago and was interrupted, but I will finish my thoughts in another more current post.