Brayton was admitted to the pediatric ICU (PICU) at Blair E. Batson. Before I continue, I must first explain how the PICU at Batson works. Parents are given a purple band. They are the only ones allowed back in the rooms from 8am-7pm, and 8pm-7am. For 2 hours out of the day, during shift change, even parents can't go to the back. Parents can take visitors back from 12 noon-7pm. The rooms are set up with glass doors and windows. Curtains can be drawn for privacy, but the windows by the nurse's desks can't be covered. There is one nurse at a desk sitting between 2 rooms. That nurse is constantly watching the children in the rooms. In the room, the children are in beds in the middle of the room. There are 2 recliners in the back of the room for parents to sleep on. Two people that the parents choose receive supporter bracelets. These people can go to the room without the parents from 12 noon-7pm, and 8pm-7am.
When I first walked in the room to see Brayton, I was completely shocked at how small he looked. He was on a small table with a warming light above him. He had the breathing machine hooked to him and taped all to his mouth. The sight, honestly, reminded me of something you might see in a laboratory where experiments are performed. It was scary but the first thing I did was plant a kiss on my baby's head and hold his little hand.
Speaking of the breathing machine, I did not realize this until after we had gotten home, but the breathing machine is life support. Brayton would have died without it. Breathing machine sounds just like something that isn't a big deal. Once I got home and though about it, I realized it was the only thing that was keeping him alive. It was a scary thought. When we were going through this, I did not put that much thought into it.
The first day we were there, they performed test after test on Brayton. They did 2 spinal taps, MRI, blood work, CT scan, EEG, and several more. Every single test came back normal. This was probably the most devastating thing ever. I wanted to know what was wrong so bad so that we knew what we were fighting.
If you know our family, there were always people at the hospital. Since people couldn't go to the room, we always had a crowd in the waiting room. When a person is in the waiting room surrounded by other parents and families, you can't help but talk and get to know each other. You become a family.
Well, our family in the waiting room got to talking to another family. The first thing you usually is ask is, "Why are you here?" The dad said that they just found out that his son had botulism. My sister in law was curious so she looked up botulism online. The symptoms matched exactly what Brayton had! Luke and I ended up talking to the dad. Symptoms progressed the same way between both our boys. Every test came back normal for him as well. The dad gave us a doctors name and told us to ask for an EMG test. We told the doctor this, but they claimed that botulism was so rare that there was no way they could both have it so they put the test off. Finally, after they ruled out everything else, they called in the neurologist who performed the EMG. This test checks the brain waves and muscle use. The results showed that Brayton's brain was telling him what to do, his muscles just were not responding. He said that he was positive Brayton had botulism but a stool sample would be sent to California for confirmation.
The neurologist told the doctors to go ahead and order the botulism immunoglobin, babyBIG, to give Brayton. A few days later, babyBIG was flying to Jackson, MS all the way from California. Luke and I were contacted by the California Health Department and were sent tons of information on botulism and babyBIG.
BabyBIG had very specific instructions for administration. The next day after Brayton received the drug, his eyes started to open a little. Over the next couple of days, he started to moved just a little then gradually got better.
Since Brayton was still on the ventilator after receiving the drug, they started to wean him off. I decided that just praying for healing wasn't enough. I needed to be specific with my prayer. I began to pray this prayer: "God, please help Brayton be off the vent by Sunday." Those of you who followed my facebook page saw this prayer all the time! Well, my prayer was answered!!! On Sunday, September 11, 2011, the breathing machine came out and my baby breathed on his own! For the first time in 2 weeks, I got to hold my little one and love all over him!!! God is so good!
I know without a doubt that God breathed life back into Brayton that day. He gave Brayton the strength to breathe on his own. Some may credit this to the babyBIG, but drugs can only do so much. We had and still have people praying for Brayton all over the United States. I know without a doubt that God answered our prayers and HE is why Brayton is alive today!
The other little baby boy who had botulism received the drug a week before Brayton and was able to go home a few days later. He never got as bad as Brayton and was never intubated
This is no where near the end of Brayton's story. I will continue our hospital stay and talk about the tracheostomy in coming blogs!
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