December 8th update

So our little guy was having a rough day today. He had quite a few spells where his heart rate would drop and he would stop breathing. His oxygen was up again to between 48-50% and he was really fussy. The nurse told me that they were going to do the spinal tap again today and hopefully that will help. I let the nurse go and let her know that I would call in the afternoon to see how everything went.

I was actually really worried before I called this afternoon. You hate to call and get bad news, but you have to call to see how he is doing. So I took a deep breath and called.

Ayden had his tap today and the nurse said it went really well…(sigh of relief). They were able to get the fluid out on the first try. They got over 3 mils of fluid and there was no blood. I guess when they are positioning Ayden, he really does not like when you pull his knees up to his chest (he had a few spells when this happened) so they put his legs straight out and bent his body forward (think about sitting on the floor with your legs strait out and touching your toes). He did much better in this position, no spells…Apparently Ayden cried when the needle went in, but the nurse told me that once the fluid started to drain, you could feel his body relax. I guess that the pressure in his head is very painful for him and once it’s drained he feels much better. And this truly shows in his body. His oxygen level is down to 38%, he has not had any spells since they did the procedure and he was all sleeping and comfy in his bed. They are also going to up his feed to 9 mils and they are also taking away one of his iv’s as he doesn’t need it anymore!

If we could just fix this issue with his head, everything would be great. we spoke with an intern doctor yesterday who said that Ayden is still to little to put a shunt in his head. this is a device that gets surgically implanted into the soft spot in his head that they can draw fluid from with out any poking in the spine…this is our next step, but Ayden needs to grow before they can do this.

So it was a hard day for Ayden this morning, but turned out allright this afternoon…just what we like to hear!