As it turned out, doing the fill itself really wasn't that difficult. But we found three big challenges in this process: getting the lidocaine wrapped properly so that I will numb up, keeping all of the necessary supplies sterile, and keeping me still!
The "fun" started when dad got home from work last night. Mom had the lidocaine, saran wrap, and two small ace bandages ready. It seemed like a good idea at least. On went a blob of lidocaine, a small piece of plastic, and then the bandage. But within seconds, it slipped and down went the lidocaine. So they tried it with a larger piece of plastic and no bandage. That didn't work either. After about 15 minutes of putting on a glob and wiping it off because nothing seemed to stay in place, they just wrapped me with several layers of saran wrap and stuck me in the high chair. We will have to come up with a better method next week!
The lidocaine has to stay on for an hour, so it was a good time to have dinner. But after sitting in the high chair for a half hour, I was ready to move! Problem is, the makeshift wrap had to stay in place, so I couldn't get going. Ideally, the cream would numb up the port so I don't feel the needle during the fill. And to make things even more difficult, the port moves around a little as I do, so I had to be pretty still. Now, for a little guy like me, being still is NOT on my list of things to do. So, when the hour was up and it was time to get started, I was already pretty cranky.
While mom, sis, and my nana tried to entertain me as I was stuck in the high chair, dad got the supplies ready: one bag of saline, 2 60 cc syringes (next week we'll fill 2 60's and 2 30's), 3 butterfly needles (one for each syringe plus an extra just in case one of them gets contaminated), suture scissors, gauze, chloraprep, alcohol swabs, and sanitizer. It was a weird sight -- it looked like a doctor's tray on the kitchen table!
The first little challenge appeared in simply getting the supplies ready. The first bag of saline wouldn't fill into the syringe. It was wired, and likely a rare complication. But out went that bag and dad went off to get a new one. He filled both syringes, attached a needle to each, and tapped out the excess air. Everything was ready.
Being the first time we did this, it wasn't easy to figure out a good position for me to be in when we start. With the ports being in my outer upper thighs, they are more or less visible depending on how I sit, stand, or lay. We started out with me on my side - a position I have never been in - because it was the clearest view for dad. Well you can imagine how that worked out. Then we tried it with me sitting. No go. What seemed to work best was for mom to hold me face to face so that she could have a grip on me and dad could manipulate the port.
As we tried to figure out what worked best, a needle got contaminated because it was set down on the table so we had to take a break and switch it out. Then the replacement accidentally retracted so we had to again switch it out! Then it was time. Dad wiped off the lidocaine with gauze, swabbed my leg with alcohol, and then again with chloraprep to sterilize. Next, mom held me still and dad went in.... but hit the wrong place. Now, this really wasn't dad's fault - I was extremely squirmy and the ports aren't all that obvious. But, to top it off, mom and dad aren't sure if I was fully numbed on that side thanks to the lidocaine slipping around! So they had to again switch out the needle, re-sterilize my leg, and stick me again where I might have been feeling it. Not. Fun.
The next few minutes went just fine, and 45 cc went in easily. The left side felt pretty firm at that point so we decided to stop. 45 was good. We repeated all the steps above for the right side, and things went much better, including the amount that went in - the whole 60 cc. Dad thought there was room for a little more, but Mim and Susan warned us not to be too forceful with the first fill and to try for 40-60 in each. So, ultimately, the first fill was a total success!
We definitely learned a lot and have some good tips for when we do it again next week. We were very grateful that my nana was here to help because we really needed a third person to entertain me. I just don't like to be restrained - which is understandable - but that made the process very difficult. When it was over and I could get down and run around again, you'd never know what we just did. I was my happy self, walking around as quickly as I could move my feet. Mom and dad are unbelievably thankful that I have responded so well to this round.
Here I am with 125 cc in my left side and 140 cc in my right. The goal by August 4 is 700!
So, one fill is down, and we have (hopefully) at least 9 more to go. I can't believe it - only 9 1/2 more weeks before we head back to Chicago and see what Dr. B can do with my new skin. Yes, this treatment is taxing - physically and emotionally - on all of us, but the light at the end of the tunnel proves it worthwhile.
Don't worry Josh, I'm sure that as you and your mom and dad all get more experience with this it will get easier and easier. You will look back at this post and say "I can't believe it was so difficult the first time!"
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