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Over 1 year later...

June 11, 2019

My apologies; it has been a while since I have updated this blog. Everything that has happened since Luke's FOA has been nerve wracking to say the least. Constantly being on guard with the large hole in his skull has been exhausting, but we do what we need to in order to keep Luke safe.

 

Over the course of the past year, Luke managed to follow the doctors' orders, and stay out of the OR for any surgery that involved the cutting of bone. The antibiotics that he was on after the infection from his FOA lasted until January of this year. His surgeons felt the need to err on the side of caution, and we agreed. He had blood draws every month to make sure that the antibiotics were not causing any harm to his system. Month after month, his numbers looked fantastic, which was a shock to Luke's infectious disease doctor. She expected him to need to switch antibiotics about 4-5 months in, but that never happened.

 

Luke did need to undergo a few procedures during this time period, but none of them involved cutting bone. The first one was yet another nasal dilation. It was pretty standard as far as they go for Luke, but any procedure still has its risks. About a month later, he had to have his tonsils removed. He had a sleep study that showed significant apnea and Luke's ENT team noticed that his tonsils were very large. The recovery from that surgery was the worst recovery process yet, I know that seems hard to believe considering what he went through with his FOA, but getting him to drink anything was a nightmare. After he recovered from that, we needed to explore the possibility of reversing the tarsorrhaphy on his right eye. Following the FOA, we noticed that since his forehead was in the proper place, he was unable to open that eye all the way. Luke's ophthalmologist agreed, so he opened it up a few millimeters.

 

After everything that Luke went through since his FOA, he was finally cleared by everyone for the 1 surgery that we had been anticipating for a long time, which was the syndactyly release of the remaining fused fingers and webbing. I will post that on the next blog post. For now, here are some pictures from the past year of Luke. I want to point out that there are pictures of the CT scan of Luke's skull after the post-op infection had done the damage. Our reaction was not one of surprise, as we could feel the lack of skull in the area that is seen on the CT, but it is a complete validation for why Luke wears a protective helmet.

 

 

 

 

 

 

 

 

 

 

 

 

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