Fill 'er Up

July 3rd came quickly. Here are some pictures from that morning. More story below.

Pictures from 7/3/2013:

We both went along to the appointment to make sure Zeke stayed as calm as possible. 

First, our doctor put a numbing cream over the stitches and the ports (a new term we learned that day for where the additional fluid would be injected). We then walked a couple laps around the building to give some time for the cream to kick in (we also gave him some of his extra strength tylenol). After about half an hour, we went back into the office to get started.

Daddy held Zeke during the procedures to help make sure his head stayed as still as possible. First up was removing the stitches. Zeke did very well during this part. Everything came out cleanly and the scars looked very good. Next was adding more fluid into the balloons. Zeke got a little upset during this part, but it was probably pretty scary with all of what was happening, especially with a second part to the day.

It's a little tough to see in all these pictures, but the ports are just in front of each of the two bags. The doctor described them as having metal bottoms so that the needle isn't able to got through the bottom. We're not sure how the top is put together, but the doctor puts the needle into the port which then passes the fluid to the balloons through a tube. Only a small bit of blood comes from the injection site which clots after just a few minutes. It is pretty amazing.

Here are some pictures from 7/7/2013 showing the tightness around the skin after the first fill-up. It's pretty amazing to see how the skin grows and relaxes during the two week stretches in-between office visits.

Pictures from 7/7/2013:

Round Two

Everything healed up extremely well from the first surgery. Aside from a scarline that seemed to hide itself, especially once Zeke's hair grew back out, you could hardly even tell he had the first surgery.

While we didn't notice Zeke being bothered by the nevus at all, we did start to notice one of the other characteristics of the tissue - it is very thin and rips easily. There were many times while Zeke was learning to walk (or just crawling around) that he would bump his head just like any toddler would do. But, if he hit it just right on the nevus, there would be a little rip in the skin followed by some blood. It always seemed to only last for a minute or two and wouldn't re-rip or anything like that. So while sometimes bothersome, again it did not impact the way Zeke behaved.

Everything else was pretty normal for Zeke. He did go through a several month stretch of not being able to shake a cold/pneumonia/cough thing. He was on antibiotics several times and also started taking albuterol treatments to help out. Things seemed to have cleared up this summer, so we think it was just some bug that wouldn't go away. I don't think any of our doctors have thought it has been related to his nevus in any way, so that has been good to know.

4/6/2013

On 4/24/2013, we met with our plastic surgeon again to review Zeke's progress and talk about next steps. She was very happy with how everything had healed and felt it was time to move to the next stage. While she felt that she would be able to get some more tissue with another excision, she thought that now would be a good time to try a tissue expansion. She didn't feel that she would be able to get as much skin as she'd like through an excision and it would be better to try an expansion earlier than later. This made us a little nervous because of all the risks that come along with the procedure. However, after talking to the doctor a little more extensively about the procedure, we were reassured that the risks are actually quite low and that if anything did ever start to go wrong, we would be able to stop the process, remove the expanders, and regroup.

So, we decided to go forward with the expansion. She would attempt to insert two, one larger one on the top of his head and a smaller one behind his ear towards the back of his head. We scheduled the surgery for 6/18/2013. Before having the surgery, we also met with his dermatologist just to make sure nothing seemed to be changing with the tissue. Again, everything seemed to be looking fine.

Pictures from 6/17/2013:

This time around, surgery was going to be outpatient and also at the Children's Hospital in Minnetonka. Elisha was enrolled in a summer day camp at the YMCA so he went there for the day while Isabella went to daycare like normal. We did drop them off a little early to make sure we checked in at time, but expected to easily be home by normal pickup times.

Again, surgery went just as well, if not better than planned. Not only was our surgeon able to get both expanders placed just how she had hoped, but she was also able to do a little bit of excision off the front part of the nevus during the surgery. She was able to get a strip about 1x4 inches (this is a bit of a guess, we can't quite remember, but somewhere in that range!). We were able to hold Zeke while he woke up this time which was helpful because he was very upset as he woke up. This was likely due to being hungry, pain, and just not quite understanding what was going on. We were able to give him some painkillers, so that helped quite a bit. When he woke up later in the afternoon, he already seemed pretty much back to his normal self.

Pictures from 6/21/2013, you can see the slightly inflated balloons:

Then on 6/24/2013, we had a one week followup to make sure everything was looking okay.  As has become pretty normal with all of this, everything was looking great.  We scheduled our next followup for 7/3/2013 to remove the stitches and fill the bags for the first time.