McCoy's Journey: One Month Post-Op

Well, we've made it through nearly one whole month since surgery, to include 3 fills to this point. It feels like it has been slow going to get where we are now, but we're thankful for all the progress McCoy has made. We already have a lot of good skin as a result of the expansion, which helps get us through the difficult fills each week.

Once a week we head to Dr. Burns's office in downtown Dallas. So far, both Dallas and I have been at all the fills together, as well as Mom being there for the first one. The first fill, so far, was the best. I had a singing video playing children's music on youtube right before the nurses began expanding the first expander, and as they poked him he didn't even cry. By the second poke, he did cry out, but soon settled back then. Then it was kind of down hill from there. But it went quicker and better than we expected, and it made me feel more optimistic for his second fill. The first fill they were able to get 20 cc's in all 3 top expanders, and his 2 side expanders. The bottom they filled with 50 cc's. McCoy settled down right after it was all over, and Mom drove us home while I sang him to sleep in the car. McCoy was fully back to himself by the next morning. For his second fill, things didn't go as well. We arrived early to our appointment only to be kept waiting for 30 minutes. By then it was past McCoy's nap and he was tired and not in an ideal state for what was coming. We had a new nurse assisting Ly (Ly is McCoy's regular nurse who actually does the fills) and things just weren't going the way I'd hoped - McCoy wasn't distracted well and I felt sad as he screamed the entire time. One time they got the needle in one port only to have him lash out causing it to pull out, thus them having to re-stick him. It's difficult enough watching McCoy go through pain, but when it's pain that could've been avoided, it's even harder. But there's nothing that can be done about those mishaps, I suppose, and sometimes accidents just happen. Gratefully, Ly is wonderful and we've always felt comfortable with her, she does a good job and we feel she always tries her best.

Today was McCoy's third fill was better and worse in some ways. I was able to distract him with the children's singing video and he didn't notice the first poke. Dallas held him and stayed calm, which was wonderful. I continued trying to keep McCoy from noticing what was going on, but even as it looked as if he was interested in what I was doing to distract him, he continued crying relentlessly. Apparently the needles kept coming out as they were trying to fill different expanders, so they had to re-poke him several times. Today everything took much longer than the first 2 times. It was emotionally exhausting, but again, the minute it was over, McCoy calmed and snuggled into Dallas. As we drove home, he didn't cry as I sang to him, and even fell asleep. By the evening, we were able to enjoy going on a walk and blowing bubbles on the back porch.

So, to this point things are looking good in general. There is one small area of concern regarding 2 of his expanders - he has a rash (well, what looks like a rash) in small areas on 2 of his expanders, the bottom expander and side right one. At first we didn't think it was excema, but now we think it might be. We are moisturizing it with CeraVe, which should help, but we also bought hydrocortisone which we will test in a small area first, then use if needed. We definitely do not want anything occurring on his expanded skin, as any skin breakdown could be potentially devastating to the whole removal process. (Skin breakdown can cause infection of the expanded skin, or the tissue expander can begin to actually poke through the weak skin). Because of these 2 areas that are dry and red and bumpy, today they only put 35 cc's in the bottom expander, but still filled all other 5 with 20 cc's as they had in the past. The expanders now seem so big, it's crazy to think they will keep getting bigger than they already are. Apparently, Dr. Burns will check in with us at a future appointment in about 4 more fills, at which time he'll measure the amount of new skin we have and he'll be able to give us a clearer idea of how much more skin we'll need, and how long it may take to get it.

Dallas and I are continuing to fast daily that we may receive the miracle we've desired from the very beginning - that this whole process can go as ideal as possible, quickly, and that we may be able to remove the entire nevus in one round. It's worth asking for, even if Heavenly Father's will may be different. We can continue to hope. Obviously, there are many lessons we can and are learning from all of this, and we'll just wait and see how this all turns out. (I could mention an amazing message that applies here and has helped, from the August 2015 Ensign called, "Patience: More Than Waiting." Look it up if you're in the mood for a good read :)).

Below are some progression pictures of McCoy's expanders. Some of you have mentioned it looks painful and sad, so don't scroll down and look if you don't want to. I'm putting them here for our own record more than to show it to you. It feels uplifting in a way to see the progress we've made.