A lot can happen in a week, and at the same time it feel as though nothing has changed.
When we left the hospital, I was told that I would need to see my Primary Care Provider, Vascular Surgeon, Neuro-Ophthalmologist and a Geneticist. So we knew our first week home would be full of doctor’s appointments! Thankfully, our girls were already scheduled to spend the week with Danny’s family so we said goodbye to them Monday afternoon and got ready for the week.
Being home and letting everything sink in meant we spent a lot of time crying together. There were a few mornings I would sit in the shower and cry. I would think about what could have happened, what if this happened again, and all of the things that I could not do because I could not see out of my right eye. I really tried to remind myself that I had to stay positive because God is in control and everything happens for his purpose. I told my best friend that this is going to be “My Story” and to stay focused on how God will use me through this life changing event.
Our first appointment of the week was bright and early Tuesday morning with a Vascular Surgeon at Baylor Dallas. Thankfully my parents decided to stay for a few days so that they could go to the appointments with us.
During our visit to the doctor, he told us that he had a meeting with several vascular surgeons that morning and they discussed my current medical situation. It was determined that there was no surgical procedure that could be done to fix my arteries. They recommended that I continue with the medicine I was currently on and just wait for the dissections to heal themselves. He also sat down with us and went over all the scans. We were able to show my parents exactly where the dissections are and we could see it all in a 3D/4D image – AMAZING!! He also told us that he believed my vision would likely not come back due to the lack of blood flow to my retina. I was devastated again.
We came home from the appointment and relaxed before my next one. We found a neuro-ophthalmologist in downtown Dallas that would be able to see us July 31st. However, before we headed out to meet with my primary care provider, we asked my parents to try to find us another neuro-ophthalmologist that could see us sooner, anywhere in Texas. Sooner is better. Then off we went to my next appointment. During this appointment we discussed everything that happened, they adjusted some of my meds and developed a plan for what to do next. She recommended I also see a Hematologist along with all of the other specialists. When we got home, my parents told us they had been able to schedule an appointment with a neuro-ophthalmologist in Dallas the next morning!!! So on day one a lot of questions were answered, however, we had new questions for new specialists. Overall it was a very productive day we’d say.
Wednesday we woke up and headed downtown Dallas for my appointment with the neuro-ophthalmologist. When we walked in they told us that my appointment would take three to four hours and I would meet with the doctor twice during the visit. They ran about 10 different tests on my eyes and ended the day with dilating them! That was a first for me because prior to this I had never needed to see an eye doctor…20/20 vision. When we met with the doctor at the end of the visit, he confirmed what we thought…I had optic neuropathy (another way of saying the optic nerve isn’t getting blood supply). He also said that he could not confirm if my vision would ever come back. Only time will tell. However, I will continue to follow up with him so they can see if there is any improvement.
Thursday was our 15th wedding anniversary. We planned to spend our anniversary in Mexico from the 18th-22nd, however, our plans changed just a little and I was not in a condition to travel anywhere. Instead of sitting on the beach with a cocktail, we were headed to another doctors appointment. 🙁 This time to meet with a Hematologist. Once again we went over what happened, in detail, and they asked me a ton of questions. They decided they wanted to run some new tests, which of course meant drawing blood, again, same as everyone it seemed. So they took 17 vials of blood (17!) and ordered another CT Scan, this time of my abdomen and pelvic area.
We came home from the appointment and said goodbye to my amazing parents who had been with us for almost a week. At that point it was just us in a quiet home and we had time to relax and enjoy the rest of our anniversary. We decided we would get pedicures because it had been a very stressful week to say the least! Yes, both of us. We ended the day with a great dinner at our favorite restaurant in downtown McKinney – Rick’s.
Thankfully, I just had a follow up appointment to check my blood levels on Friday. My best friend came in to hang out with us for the night and it was so great seeing her. She’s always so comforting to me.
Overall, week one was very busy but very productive. We were able to get a lot of questions answered but we are still in search of why the dissections happened in the first place, if/when they might happen again and what to do next. I think the Lord said it best himself when he said “Be still and know that I am God”.