When Tyson was first diagnosed with sickle cell disease, I had no idea what that…
That night I slept in ICU with Jordyn and Tyreke slept with Tyson on the 5th floor. My mom stayed with me so I could go back and forth between the kids’ rooms. I needed to know what the doctors and nurses were doing but I couldn’t be in two places at once, so I thank God for my mother dropping everything to be there and support me, Tyreke, and the kids.
Because Jordyn had been unresponsive, she had lost some of her motor skills and needed to be put on oxygen. She actually stayed on oxygen almost the entire time we were at the hospital for those nine days.
The next morning Jordyn’s motor skills were already improving by the time the doctors came in to check on her. They told me that both of the kids would need to have blood transfusions. Jordyn also needed a plasma transfusion because they needed to run some more tests on her, but her body wasn’t strong enough for the tests. They also told me that one of the tests would be a spinal tap but because her oxygen was so low that she needed to be put on a ventilator in order to perform this procedure. To say I was scared would be an understatement but I had this constant feeling that God was going to take care of my babies so I trusted in Him and the doctors and said ok to all the tests because at this point, they still couldn’t tell me what was wrong with my baby.
While all this was happening to Jordyn, I was told that the blood transfusion Tyson had gotten that morning didn’t boost his hemoglobin up high enough (and it still to this day hasn’t gone up to where it used to be before all this happened) so he would need to get another one. The doctors also informed me that his spleen was enlarged. Now for those of you that don’t know this is actually really common in children with sickle cell and for Tyson to have been just a few days away from turning 6 it was really good that this had never happened to him before. I know quite a few children with sickle cell ss that have had to get their spleens taken out before the age of 5, so even in that moment I was able to count my blessings.
A Splenic Sequestration is when the sickle cells block the blood vessels in the spleen and blood can’t move freely through and it causes it to become enlarged. It is very dangerous and the doctors were hoping that another blood transfusion would help Tyson’s spleen to go back to normal. Thank God after a few hours his spleen started to go down and his hemoglobin slowly started to come up as well.
After all the tests had been run on Jordyn, MRI, MRA, Spinal Tap, and so many others with her blood and nasal passage. The doctors came back to tell me they thought it was the flu. They had already determined it was the flu for Tyson on the first night we were there but the flu test they did on Jordyn had come back negative the first time. The doctors still were not ruling out meningitis, but those results hadn’t come back yet because the spinal tap results needed more time than all of the other tests, so I was only told she had the flu for sure.
The ICU doctor told me that he had only seen one other case like Jordyn’s. It was a little girl a few years older than Jordyn that didn’t have sickle cell but for some reason the flu caused her to have seizures and be unresponsive. He couldn’t tell me anything except that they were going to give Jordyn a bunch of antibiotics in hopes that it would help her to recover.
Once she was able to get off the ventilator, they had to put her back on oxygen because she still wasn’t able to breathe on her own very well. But she was talking more and her motor skills were also improving.
By this time, we had a massive support system at the hospital with us. Our family, our friends and even our church family had come through FULL FORCE with love, prayers, food and even financial support. I have no idea how we would have made it through without the support of our village.
All of this happened on December 17th. The 18th was just a bunch of monitoring and running back and forth from room to room for me and Tyreke making sure we spent as much time with each child as we could.
When we got up on the 19th the doctors told me Jordyn was doing so good that she could leave ICU. I was so happy to get off that floor because I felt like we were one step closer to going home. Or so I thought.
The doctors were kind enough to give Jordyn the room right next to Tyson and I was so happy to have my babies close to each other again. They still haven’t seen each other (except on FaceTime) and this was the longest they had been away from each other their entire lives. So them being just a room away from each other made me feel so much better.
A few hours after Jordyn was moved, Tyson’s liver started to shut down on him. His spleen had gone down almost to its regular size but for some reason his liver wasn’t working properly. The doctors told me that he needed to be rushed to get some tests because they were concerned Tyson would need to be moved to ICU now. I called my mom and we just started praying. The kids hadn’t been on the same floor for a full day yet and now they were saying they would have to be split up again.
I went with Tyson while they did the ultrasound on his liver and held his hand. His liver problems were causing him pain and all I could think was Lord please don’t let this turn into a pain crisis. After running the test and speaking to the liver specialist we were told that Tyson wouldn’t have to move to ICU yet but they needed to monitor him very closely to make sure things didn’t get worse.
And just like that, I felt that God was still blessing us. To say that I was being optimistic would be an understatement. I knew without a shadow of a doubt that God was going to bring us out and as long as I held onto my faith, we would be ok.