surgery's blahhh

quick update on things. A couple of weeks ago I noticed more fluid leaking from Easton's intrathecal port site. I watched it for a few seconds and realized it was leaking quite a little bit enough to soak through his shirt to the point I could wring it out so I hurried to call the Dr's trying to figure out what I needed to do both geneticist I work with were gone to a medical conference. I was able to get a hold of them and it was determined that we needed to rush him to children's hospital here in Utah. As we were driving up there I noticed that Easton had started to exhibit signs of low pressure and with the amount of csf he was losing it was only a matter of time before this happened. He was sleeping and I could barely get him to arouse at all. We got him to the hospital, and after I had to explain to nearly every neuro surgeon what was going on and the type of device he had which non of them believed me because as they would say," we have been neuro surgeons for 20 years and have never heard of such a device for this medication" so finally they talked with the Dr's from N.C. and confirm what I had already told them a hundred times and admitted him to the hospital and scheduled him for surgery the following day to remove the device. Due to the low pressure he slept nearly all day and into the night which was good because they weren't able to get him into surgery until 7 that night. Needless to say the surgery went well and the device was removed without complications. What I'm figuring happened is that Easton has recently had a growth spurt causing the tubing in his spine to start slipping creating a larger whole in the durha causing it to start slipping from his spine. This in turn allowed spinal fluid to leak around the tubing and since his tubing had been placed in the same place for so long it had created a kind a channel that once the tubing was completely out the spinal fluid could flow freely through that channel and the only way out was through a small hole were a stitch from the previous surgery had been and not quite healed. So now with all of this we are going to continue the medication but it will be given through a spinal tap rather than the device and right now I'm thinking that until we can get these issues resolved this is the way to go.

On another I had a very "normal" experience with Easton that just shows how well he is doing. I was doing something I Can't remember what but Easton got into trouble and I told him he needed to go to his room until he could act nicer his reply was to call me a BUTTHEAD stick his tongue out at me and run to his room. I stood there shocked and trying very hard not to laugh. I was a little excited to say the least because even though I'm not quite sure how you would rate this on a scale, its such a normal thing for kids his age to do. We did tell him he couldn't talk to mommy like that he said I'm sorry and that was the end of it. he is continuing to learn his sight words and all the other normal kindergarten things and keeping right up with everyone in his class despite missing quite a bit of school due to Dr. visits and surgery's. The port kid had to have another set of tubes placed 10 days after the port removal. Everything well also and they were able to remove the stitches while he was under for the tubes which is great. I hate watching them remove stitches on areas that look so tender.