Finn 2.0

Apologies for the lack of updates over the last couple of weeks! Things have not quieted down much since surgery! We were very lucky to have all of Finn's grandparents visit at different times over the last 3 weeks. It was nice to have family around to lend a helping hand. We also had a wonderful Thanksgiving with Mema. Quiet and relaxing was just what we needed after the crazy start to the month. This Thanksgiving, of course, we were most thankful for Finn's health and the expertise of his doctors. Unfortunately, his molars are coming in and he is in the process of dropping his morning nap, so he has been a bit off. But those things aside, he is great!!

No news has been good news in cranio world. Tomorrow will be 3 weeks post op. This morning we had our first post op appointmen with Dr. Williams the plastic surgeon. We had some minor concerns with the feel of his head but were hopeful that it was all normal. Dr. Williams assured us that all was as should be and we were quite relieved!

I never fully explained what they actually did to his skull and it is hard to explain without using his head as a model, but I will try! I am re posting the picture of the neurologists drawing of Finn's new head in case that helps my poor explanation.

Since there was a significant amount of bossing in Finn's forehead, the original plan was to remove a rectangular piece of his forehead, reshape it and then reattach it. Once in the OR, the team decided they could be less invasive and just removed a piece of his skull at the hairline and then essentially flattened it by pulling the bone back and reattaching it with dissolvable sutures.

(The black, shaded areas are were skull was removed.)

(You can see the two circles in this picture showing were the forehead was reattached.)

One of our biggest concerns, once the swelling went down, was that you could see the sutures protruding through his skin.

Exhibit A:

I am quite certain the doctors explained this to us in the hospital but I wasn't retaining all the details on the little sleep I was managing. Based on the very elaborate, 1D marker board drawing from Dr. Reisner, I envisioned the sutures higher up and not really at his temples. I was wrong.

Dr. Williams explained reexplained that it is a plastic suture that will dissolve in about a years time. It starts to absorb fluid which causes it to breakdown and it is naturally decomposed by the body. Swelling may occur when they begin to dissolve so that is something to be prepared for down the road. (Someone remind me to read this post when I start freaking out next November :)) But it is totally normal that we can see it now. Our own little Frankenstein!!

Our other concerns were two "bumps" on the top of his head in the back. They were clearly bone but it made Brian and I nervous as we didn't recall them being there last week. Again, they may just be presenting themselves as swelling goes down, or maybe we are just more comfortable rubbing his head again. No cause for concern though! The bumps or bone are really just an area of the skull that feels like it is bulging because there is no bone next to it. In the drawing above there lines that run down the side of his head, stemming from the black strips. These are what the doctors describe as barrel cuts. They are designed to allow the brain and skull to expand side to side. I describe it to people as an accordion expanding. (That's my fancy medical lingo.)

His incision is also looking better everyday. His stitches are dissolvable also. The more it heals, the less visible it becomes. We get asked a lot why, or how, they didn't shave is head. From the various support groups, I have learned that it is really the doctor's preference. Some claim there is less risk of infection if they shave the area where they will make the incision. Ours didn't seem to think so! I've heard of other parents that chose to shave the entire head so the hair will grow back in evenly. So far there has been no sign of infection or hair loss around the incision. When we left the hospital, we were instructed to wash his hair but rinse it with fresh tap water, as opposed to used bath water. Well I am still doing that! I never asked when I should stop and for something so easy that could potentially reduce infection risk, I don't see any reason to stop yet.

Last night Brian said to me, "I am so afraid that there is going to be something wrong since everything has gone so well." I couldn't have agreed more. We clearly have success guilt, if that is such a thing. Could it be too good to be true? I don't think so anymore. We have been through enough that we deserve this.

We are so happy to have a restored peace of mind (at least for now) and we ask for your continued prayers that Finn will remain on this path of surgical success! We have our follow up with the neurologist on Wednesday and I have no doubt he will have the same positive things to say. Our next appointment with Dr. Williams will be in late February at 6 months post op. We will see him again six months after that and then yearly going forward.

Our biggest risks/concerns going forward are that the bones will not fuse together. If that is the case, he will require a touch up surgery down the road. This is common in 15-20% of cranio patients. There is also the risk that the bones will fuse too soon again, or the craniosynostosis will reoccur. Dr. Williams said he is confident that Finn will not be at risk of this. One of the plus sides of his age is that even if the  plates fuse in 3 months time, he will already be 17 months old and that is an acceptable age. Some of the younger patients whose heads have a lot more growing to do would be more concerned.
(The ideal age for plates to fuse is 2 years.)

I am shifting all of my energy to Christmas! It is my favorite time of year. I loved having my mom here this weekend to help break out all of the decorations. We are both in full holiday mode now! I am looking forward to sharing the holidays with friends and family and toasting to a blessed year!

(Thanksgiving 2013)

"Things turn out best for people who make the best of the way things turn out."
John Wooden