Here is my current status...After a lil bit of a frustrating Thursday things are starting to move right along. I am going in to Huntsman to meet with Dr. Johnson on Tuesday. I have to keep all day open and available because they are just going to fit me in :) My doctor, Dr. Pingree went up and met with Dr. Johnson on Friday to talk about me. Dr. Johnson is the only one who does the awake surgeries in the state (there are very few dr's who do them in the country!) So I am excited to have at least the chance to meet him and to discuss further plans. I have been warned that my surgery is extremely rare ( I know I have said this over and over) but it is going to take a very specific team assembled for my surgery. There is only one anesthesiologist team that will be putting me to sleep then pulling me out of it. There is a therapist who will be talking with me and having me answer questions. There will be a number of neurosurgeons there... so it is complicated and they continue to reassure me that they are doing everything they can. And of course I want it done right.
As long as I get a normal nights sleep I feel good. But if muscle twitches keep me up then I only sleep 1-3 hours and then a massive migraine comes on that lortab can't touch then I feel like garbage. But I am excited to be getting back to normal and to feel like I can in some small ways contribute to my family.
Also Taylor has a follow up appointment with her Cardiologist Dr. Puchelski at Primary's Monday morning. I think it is a very basic appointment. She is doing great and averaging a couple of goals every soccer game, we have no concerns or worries!
Thank you to everyone for the blog comments, emails, texts, visits, meals... They do mean a lot and are so helpful. I could not imagine going through a situation like this and feeling like I was all alone. I KNOW I AM NOT! This thing makes me just want to go to the hospital and befriend all those people who are alone :) seriously.
I feel completely at peace. I will get through this and as soon as I do I may live my life a little differently. I am no longer afraid of anything, what is the worst thing that could happen? Seriously!
As long as I get a normal nights sleep I feel good. But if muscle twitches keep me up then I only sleep 1-3 hours and then a massive migraine comes on that lortab can't touch then I feel like garbage. But I am excited to be getting back to normal and to feel like I can in some small ways contribute to my family.
Also Taylor has a follow up appointment with her Cardiologist Dr. Puchelski at Primary's Monday morning. I think it is a very basic appointment. She is doing great and averaging a couple of goals every soccer game, we have no concerns or worries!
Thank you to everyone for the blog comments, emails, texts, visits, meals... They do mean a lot and are so helpful. I could not imagine going through a situation like this and feeling like I was all alone. I KNOW I AM NOT! This thing makes me just want to go to the hospital and befriend all those people who are alone :) seriously.
I feel completely at peace. I will get through this and as soon as I do I may live my life a little differently. I am no longer afraid of anything, what is the worst thing that could happen? Seriously!
We are so blessed in this area. We are so close to world class medical facilities and the talents that come with them. And so much closer is a tiny little neighborhood, full of world class people! Some serve, others are examples. Thank you for sharing you strength and courage.
ReplyDeleteI am so inspired by your example. (Not that I've ever felt different!) You are amazing and I SO appreciate these updates. I wish I could do more, but know that you and your amazing family are always in my prayers.
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ReplyDeleteRita and I pray for you daily. This "Destroying Angel" strongly recommends that the real one pass you by. All the best!
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