Malachi – please pray!

24 Apr

I haven’t posted much here. It is easier to post to Facebook. We need prayers for Malachi. He was progressing well and we were going to move to a new room yesterday. The only thing that was keeping him from being upgraded was that he was having high blood pressure. Yesterday morning (Tuesday) at around 5:50am his heart rate went up to 150’s, he had an episode that caused him to desat to 40, stop breathing and his eyes rolled back. It was very scary. They called it a stroke alert. They called everybody in, got the crash cart and intubated him in front of me. They asked me if I wanted to leave, but I wanted to stay with him. I’ve seen him intubated in front of me before when he had his bleeding episode a year ago. Unfortunately, by the end of this post you will see that he is intubated another time. Anyway, yesterday….they took him to a CT of his head/neck almost immediately. They didn’t see anything and ruled out a stroke. They then thought it was a seizure. He was put on an EEG for the day. Nothing showed. They told us it must be PRES syndrome. They extubated him (removed the breathing tube). Malachi woke up, after awhile he was able to have a popsicle and he was himself again. I went to get some sleep. I slept about 30 minutes and Kevan called my phone to come back right away. Malachi had another seizure (they were now calling it a seizure)….it was a focal seizure. His muscles on his left side cramped up, he began to shake his leg and look to the left. This was not as bad and they did not reintubate him. He recovered in about 30 seconds, but Kevan was quick to push the alert button so they were able to watch the seizure. They gave him Keppra for the seizures. He was acting okay again and I knew we needed sleep so I went to lay down in a sleep room again. I slept 3 hours, but while I was sleeping……..

He fell asleep and immediately stopped breathing. His sats went down. They woke him up, they bagged him and sats came back up. He did it 6 more times. The med was making him drowsy. They did not understand what was happening and they were trying to figure out a pattern (high blood pressure, stimulation, etc) to see what might be causing it. They got him on a cpap instead of reintubating him again. I woke up at around 1:15am and came back to see how he was doing. He was doing great. Just sleeping. But he would wake up very agitated. He was trying to rip off all of his dressing and scratch off all of his scabs. Kevan decided to go lay down at 1:30am. Shortly after Kev left I asked if we could give him a popsicle to get his mind off of the itchiness. He was back to himself and acting great. Then, after he would have periods of staring, not knowing his name, not knowing how old he was. But, every time he knew his brother’s name. Not his own, but he knew Josiah’s name. Warms my heart. He called me daddy and he also did not know his colors.

Kevan woke up at 7ish. I decided to go back and lay down because we can only have a sleep room until 9am. Kev texted me they removed his pacing wires to ready him for the MRI today. I decided to take.a shower and while I was blow drying my hair his heart rate went back up to 156. I got Kevan’s text and ran out to his room. He started having a seizure as soon as I entered the room. It was a bad one. He stopped breathing for several minutes. They re-intubated him, gave him more Keppra again and ativan. They told us the seizure was a left lobe seizure and was caught on the EEG. They scheduled him for an MRI and he is currently having his MRI as I type this. We are praying for answers. Answers that have fixes. Hopefully, easy fixes.

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