When Tyson was first diagnosed with sickle cell disease, I had no idea what that…
Last year was a whirlwind of events for our family. We experienced some really high moments and some really low moments. We received amazing support from our friends and family. But we also had a couple heart breaking, faith shaking (but never broken) moments.
At the top of the year in January, Tyson was rushed to the emergency room with a pain crisis for the first time in his life. Every other crisis before had never been so severe that we couldn’t handle it at home. So needless to say my husband and I were very nervous. When we arrived at the ER and told them he was having a crisis and that this was his first time needing to come into the ER for pain the doctors were baffled. He was quickly attended to and given Toradol (a stronger Motrin) and Hydrocodone. After about 30 minutes, he was feeling much better and by the grace of God we were able to go home that night.
I would like to add that it was a little bit of a battle with the doctors on what medicine to give him. They initially wanted to give him Morphine but I wasn’t comfortable with that, so they begrudgingly gave me other options. If you don’t feel comfortable with something the doctors are doing or saying, you have the right to speak up and ask questions. No one knows your babies like you do!
Unfortunately, that was not Tyson’s only time going to the ER last year. In June a few days before Father’s Day Tyson was showing signs of a stroke. We rushed him to the hospital. When we arrived they immediately ran a bunch of tests on him and gave him a MRI. Luckily, the MRI didn’t show he was having a stroke but the doctors still weren’t sure why his speech was slow, they kept us a few days (yes, we spent Father’s Day in the hospital) to run more test and to do an MRA to get a better look at an artery that looked concerning to the doctors. After running a ton of tests, they determined that he was having a crisis in his jaws and that’s why his speech was slow/slurred. Five days later we walked out of that hospital with normal TCD results and full of joy.
Last year wasn’t all bad though. We received a tremendous amount of support from our family and friends at the Sickle Cell awareness walk in April. We had about 20 people come out and support us and it absolutely melted my heart to have so many people show my babies that kind of love. Jordyn also had a really good year, not one ER visit and her hemoglobin went all the way up to a 10.2!! And after that mess in June with Tyson we didn’t have to take him back to the hospital for any kind of emergences. We did start Tyson on an “herbal medicine” called Evenflo but I’m not sure if it has made any major changes for him, I’ll be sure to keep you posted on that.
Right now, the kids are doing wonderful. I’m doing my best to keep them bundled up in this cold weather, I am still giving them all their vitamins & minerals and folic acid every day. Jordyn’s hemoglobin did go back down to a 9.5 but I am hopeful that it will go back up again. Tyson’s hemoglobin went up to a 10.8!