We’ve arrived at @myakrongeneral for Gavin’s MRI and things have changed
We've made it to Akron General but something has change and things now make more sense.
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December 5, 2018
We got some amazing news from @myakrongeneral hospital this morning
We thought Gavin's incredibly important MRI was canceled due to insurance denying the claim. Here's what ultimately happened.
December 5, 2018
Aside from learning he’s having chest pain, here’s how Gavin’s appointment with #Cardiology went
First of all, I appreciate your patience with this update. I'm exhausted and just didn't have the energy to write earlier. I'm going to try and keep this brief because I want to be in bed before midnight. Gavin had appointments at the Cleveland Clinic today. His first appointment was for an EKG and the second was with his new cardiologist, immediately after. While we didn't hear the results of the EKG, from what I saw, it looked normal. I was trained to read EKG's as a medic. It's been awhile since I've read a 12 lead but nothing stuck out to me and I'm sure if something was wrong, we would have been told. His actual appointment with his new cardiologist went really well. She's really nice and was…
November 8, 2018
We’re waiting to see the doctor and Gavin’s getting hangry
Gavin's EKG went well and literally lasted only a couple of minutes. We made it to his second appointment of the afternoon and just spent a good bit of time, meeting with the nurse, going over a detailed family history. She was great and I really appreciate that. ☺ Now we're waiting for the doctor and I must say that it feels like it's about 1,000 °F in this room. I hate being up here by myself but it is what it is. Hopefully it won't be too long of a wait because Gavin is getting hangry..
November 7, 2018
We’ve just arrived at the @clevelandclinic for Gavin’s #EKG
Gavin and I arrived at the Cleveland Clinic, right in time. Our first stop is his EKG and then we see his new cardiologist immediately afterwards. Lizze wasn't feel well this morning and therefore stayed home. At the moment, we're crammed into a tiny waiting room. I don't care about the size of the room but some one in here is a very heavy smoker and they smell like an ashtray. I don't do well with this particular smell. It's making me sick. 🤮 It's a good thing Lizze isn't here because this smell would kill her. Anyway, now we just wait to be called back.
November 7, 2018
Gavin begins Cardiology journey at the @clevelandclinic this week
The Cleveland Clinic called on Friday, before Lizze and I left for the funeral. They were calling to make Gavin's Cardiology appointment. The last time Gavin was at his Neurologist, we discussed Gavin having Ehlers-Danlos. His doctor wants him to be seen in Cardiology at the Cleveland Clinic because of the risk that he may have the vascular form of Ed. Ehulers-Danlos can complicate many aspects of his health. We decided to pull everything up to Cleveland from Akron because Gavin is aging out and will eventually have to move anyway. On Wednesday, Gavin will have an EKG or Electrocardiogram, to sorta measure how his heart is doing. We'll immediately see the doctor afterwards. I'm not expecting anything new to be discovered here because he's seen Cardiology several times at…
November 4, 2018
How the @clevelandclinic gave us hope
It's been a couple of days and I've still not gotten around to updating you on Lizze's appointment at the Cleveland Clinic. As a quick reminder, she was at the Neurological Center for Pain, seeking help for her migraines. Lizze went into this appointment with very, very low expectations because for the most part, she's without hope that she will ever live a day without pain. I get where she's coming from and it breaks my heart to see her go through this. That said, I'm carrying the touch in regards to hope because I cannot accept a reality in which she can't find relief from her migraine. She deserves to exist without pain and I will keep working towards that end. We arrived a bit early but only had…
October 21, 2018
At the @clevelandclinic Neurological Center for Pain hoping for a miracle
Lizze and I have safely arrived at the Cleveland Clinic's, Neurological Center for Pain. She really scared that they won't be able to help her. She hasn't been in - nor does she want to go on pain medication. She want the pain to stop, not just be masked. We are hoping that she can try a medication called Aimovig. It came out earlier this year and is the very first medication designed specifically for migraines. It's not a medication for something else that used offlable to treat migraines. It's supposed to be a big deal and we're hoping she can try it. She's had the same migraine for close to 7 years now. It never goes away and it only slightly lessens or gets worse. She's desperate for relief…
October 18, 2018