Waiting game

Welcome to the waiting game. It seems like that's all we have done since finding out about Eli's nf. We switched his nf care to Houston and we are much happier there. We have seen so many specialist since switching. Its been a hassle and hectic but its all worth it to make sure he is OK.

Nf clinic- we met with them at the beginning of February. We just went over all the nf stuff and had some blood work done to make sure he didn't have any other undiagnosed genetic disorders. Thankfully the test came back negative. My husband was also tested to make sure he doesn't have nf, but we haven't gotten the results back from that yet.

Oncology- we've met with the oncology Dr twice now. We learned that his tumor is actually 2 tumors. One starts around the stomach and the other is in the chest and neck. He wants to try and find a clinical trial to shrink the tumor before trying to remove it. Because of his age I don't think he is going to qualify for any and neither does the nf clinic.

Pulmonary- they said he heart and lungs look fine. They are more worried about his air way and his sleep apnea than anything else.

ENT- they said he needs ear tubes for his chronic ear infections and fluid. They put a scope down his nose and looked at his vocal cords and found his left vocal cord is paralyzed. They said this is why he aspirates his food and said he cannot have any food by mouth until after surgery so his lungs are as healthy as possible. They said most likely the tumor is pressing on it or its where the tumor started and has damaged the nerves. They're not sure if it will ever work right again. They will know more after a new mri. They want to do a full scope of his airway and lungs when they do surgery.

GI- they need to put in a g tube to not only make it easier on him and me but now more than ever to help his air way.

I was told that they are going to have a tumor meeting with all the specialists and they should be able to schedule the mri and surgery to do the ear tubes, scope and g tube all at the same time so they only have to sedate him one time. So now we wait and pray it doesn't take more than two weeks to get a call from them.