Evan's Journey: Homeward Bound

I can finally say, and with a huge grin on my face, that we are on our way home. We had our first saline fill today and got cleared to have Evan’s drain removed as well. We decided why not get a head start to the trip since we knew we were going to take 2 days to get home, and arrived safely in Streetsboro, Ohio.

The week flew by and we didn’t get to see as much as we had hoped. It was raining and gross out on Wednesday so we just walked around the mall to get out. We also did a lot of famous house stalking in Chicago – pics below!

Filling Evan’s expander today was rough to say the least. Jeff and I decided that he would be the one to hold Evan as I insert the needle with saline. We both thought my job was tougher but after today, he definitely has the rougher one. The nurse spent a good hour explaining how to proceed with the fill and my nerves were terrible. Poking your kid just isn’t my idea of a good time. We put numbing cream on his port (which is located under his skin, right above his left ear) before we left for his appointment as it takes about an hour to process on the skin. After prepping, I finally stuck the needle in the middle of the port, Evan screamed, and I swore I heard/felt the needle bend so my reaction was to take it out. The nurses assured me this was fine, and that I probably just went in at a weird angle. Wow, talk about my nerves now! I tried to quell the uneasy feeling, so I quickly got a new needle, prepped the area (3-step cleansing process) and tried again. When inserting the needle, you have to first put a few cc’s in, then take them out, to make sure you actually got the needle in the port. Many multipart steps. The second time around, the nurse said I hit it spot on and I proceeded to fill the expander with 10 cc’s. Evan was absolutely hysterical. I don’t think I put enough numbing cream on, but the nurses said he was probably more upset about being restrained than anything. Still felt horrible.

The goal is to get the expander to 250 cc’s. We expect to put in anywhere from 10-25 cc’s per fill (more or less depending on how hard the expander gets and a few other tricks we were shown), so it will not be the same every week. One fill per week - our plan is Friday, after work, when he is nice and full but won't barf if he gets hysterical. The thought about pricking him again, 11 more times, makes me sick to my stomach but we will do what we have to do!

I can’t wait to get home tomorrow. Normalcy will be ever so welcomed.