Malachi Update: Day 7 post-op 7am

25 Apr

Kevan and I had to get sleep last night so we went to a sleep room since Malachi is on the ventilator and precedex (keeps him sleepy). When I came in his room at 5 he started to cry and almost jumped out of his bed. I didn’t realize he would be more awake or I might not have left him. He was very happy to see me and he’s been responding very well. He nods when we ask him questions, can tell us numbers on his fingers and gives us a thumbs up when we ask him… so his brain seems to be working well. It breaks my heart though that he’s not sedated and knows what’s happening. He tries to talk and sign but I don’t know what he’s trying to say. Regarding the spinal tap, some results have come in. It doesn’t look like it’s an infection. One result looks like autoimmune encephalitis but the MRI doesn’t correlate with that. It doesn’t sound like they will remove the ventilator today since he hasn’t had a seizure since they reintubated him. Also as we were all talking last night we think that he was showing seizure signs on Saturday but we just thought it was the Ativan. 😔 He’s just watching his tablet. I did ask child life to come by and do some play things with him. I know he’s bored.

2 Responses to “Malachi Update: Day 7 post-op 7am”

  1. Rod & Sandy Macleod April 25, 2019 at 1:13 pm #

    Our family continues to offer prayers for Malachi, and that God guides the decisions of his doctors through this treatment and recovery. He is such a brave little boy. Seeing him confined, and unable to speak, is heart wrenching to say the least, for those of us reading these posts. Being there every day must be off the scale worry for you and Kevan. I don’t know how many people are following these posts, but I’m sure each and every one of them are feeling that same urgency and offering prayers every day…

    Rod & Sandy Macleod – Rochester Hills, Michigan

  2. Cira Abreu April 25, 2019 at 4:21 pm #

    Keeping praying for Malachi. God bless you all!

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