Our first week home was full of doctor’s appts, so I was glad when week 2 rolled around because I knew I would not be spending the week going from appointment to appointment. The girls came home from visiting the grandparents and we began trying to figure out what our new “normal” was going to be.
It’s now been one month since my life changed. I’ve always heard people say it’s crazy how in an instant everything can change. I truly can see that now. If you’re scratching your head wondering what is she talking about, you can read about my life-changing moment here and our first-week update here.
So as I was saying, our second week at home was a little more relaxed. The girls stayed busy with playdates and vacation bible school. I forced myself to relax and Danny returned to work.
It was important for us to try to get our life back into some kind of normal schedule. We also knew it was important to make memories because everything could change in an instant, again. With that in mind, Danny and I woke up early one morning and went out for a hot air balloon ride.
Week three began just like every other week had begun…going over my appointments for the week and figuring out how I would get to each appointment. We kicked the week off with a visit to my cardiologist. It was probably one of my best appointments.
Danny and I had a nice date night on that Monday, but then I noticed that my head was hurting so we decided to go home and I went straight to bed. I woke up several times during the night because my headache was getting worse. After I really couldn’t take it anymore, at 5:30 am Tuesday morning I woke Danny up and told him my head had been hurting really bad all night. The day before this, one of the things the cardiologist told us was that if I had a headache that did not go away after medication, we needed to immediately go back to the emergency room because this could be a sign of another dissection.
We woke the girls up very calmly and told them I had an early doctors appointment and we were taking them over to a friends house. After we dropped them off, we headed back to the Emergency Room. I was sent back for a CT scan less than 20 minutes after we arrived. I kept telling myself it was nothing and we would be home before breakfast. It seemed like we waited forever for them to come back with the results, and the doctor walked in and confirmed I had a new dissection on my left vertebral artery. I lost it!! Why does this keep happening?
They went on to say that there was not a lot they could do for me at Baylor McKinney and that I needed to be transferred to Baylor Dallas. Initially, we were told it could take a couple of days before a room would be available and I’d have to wait at Baylor McKinney, but angels were at work behind the scenes and a room opened up that same day. We are so grateful to everyone who helped us through this time.
Once my room was available, they called for my transport…an ambulance. The paramedics loaded me up on a stretcher and off I went to the ambulance. For the next hour, I prayed and read different scriptures because I was so nervous. Finally, I arrived at the hospital and went straight to my room which was in the Neuro ICU.
After I was set up in my room, we waited to meet with the neurologist. Finally, he made his rounds on the floor around 9pm! This doctor was probably one of the smartest doctors we have ever spoken with. We discussed if he had ever seen a case like mine and his response was he had seen one about 30 years ago. He then went on to say it’s possible that this is genetic, but we would need to do some more testing to start figuring out what was going on. I went to sleep that night very afraid about what the next day would hold.
Wednesday morning we finally met with the Neuro-Vascular doctor. He decided that I would need an angiogram, however, I would have to wait until my blood count levels were lower. Finally, Thursday afternoon, I was ready for the procedure. FYI, an angiogram is where they put this huge needle (okay it was huge to me) in your femoral artery in your leg and then send a catheter up through the arteries past your heart into your neck to check the blood flow in the major arteries. We found out that there is absolutely no blood flow going through my right artery to my brain. Also, even though I had two dissections on my left vertebral artery, I still had good blood flow through that artery. Finally, we were initially told two weeks prior that my left carotid artery had a dissection, but during this procedure, the surgeon found out there was no dissection detected. It either healed or wasn’t there to begin with. Either way, hallelujah!
After the procedure was over, I had to stay in the hospital until my blood levels were back to normal, which was three days!! Thankfully, on the third full day in the hospital, I was at least able to go outside. For those that have ever been in the hospital, this is a huge thing!
Finally, on Sunday, August 5th, I was discharged from the hospital. It was so nice to finally be home and see my parents and be with everyone.
My mom decided to stay with us the last two weeks and has been helping us with the girls, laundry, and so many more things! As we went from doctors appointment to doctors appointment, she was there to support us.
One of the big question marks through this whole thing was why had this happened. We were told it may be genetic, and a vascular genetic disorder would not be a good thing. While we were in the hospital, they took one vial of blood and sent it off for genetic testing. We found out this week the testing is completed and the results have been sent to my geneticist.
However, we received a phone call yesterday with the test results and everything came back NEGATIVE!!! 🙂 That means I don’t have any underlying disorders associated with any major known conditions and all three dissections were spontaneous and most likely happened at the same time.
I continue to need to relax and take it easy until these dissections have healed. It can take three to six months for healing to complete. Once they’ve healed, I will still have to make some changes, but I will not have to live in a bubble.
Thank you for all of your thoughts and prayers! We’re also so thankful for all of the support we have received from our family and friends!!