Update

Well I am trying to get caught up on things. I’m almost caught up on laundry and I’ve done a bit of cleaning. It’s been hard to clean when we’ve been in and out of the hospital, and then I was so sick I couldn’t even move. But I’m better today, so I am going to try and remember everything that has happened so far.

We we discharged from the hospital from Ethan’s 2nd surgery on Tuesday Sept. 21

we were home one day, and then on Thursday the 23rd we noticed that a little bit of CSF was leaking from Ethan’s incision from where his drainage tube was. So we took Ethan to the ER and they removed a stitch and placed a new one. (not a very good one at all) I had a bad feeling about this stitch because it seemed like she should have at least placed 2 stitches with how long the hole was that they were stitching. But they did a pressure wrap on and sent us home.

we got home and had a wonderful dinner that some wonderful friends had made for us. and about 4 hours after leaving the hospital I was holding Ethan and felt something wet, I moved him and noticed a big wet spot on the couch and wetness all over my cheek. The wrap on his head was soaked. They sent us home with some extra stuff incase we needed to re-wrap it because he had pulled it off or something. So we decided to take off the bandages and we could see CSF just dripping out, we wrapped it back up and rushed back to the ER, where they added another stitch, which didn’t really help. And admitted us to the RTU for the night until our Doctor got in and decided on what he wanted to do.

Once in the RTU I was asking about giving Ethan IV fluids because he wasn’t allowed to eat and was leaking so much CSF (i was worried he would get dehydrated) and the nurse said that neuro hadn’t ordered anything, but she could tell I was worried, since we’d have to change his dressings every 15 mins to keep him dry. (also a huge risk of infection having his head draining so much)

The nurse talked to the on call resident, whom we weren’t to impressed by already, and she said that they didn’t realize that fluid was still leaking, even after I told the ER department before they sent us to the RTU…. so she came in once again, and gave him about 2-3 more stitches…. all without numbing or pain killers. and all of them we had to hold Ethan down while they did it.

I’ll update more later…..