Pressure support is down to 10 on the ventilator and he’s doing great. Fever overnight so they re-cultured everything. Staff refused to give an enema the last two days so we’re back to vomiting with coughing. The doc this morning agreed to order one, but they also put him on Miraxlax which I hate and would like get off asap. We are trying to get them to condense the tube feeds to daytime hours so overnight his body can do cellular cleanup. The doc on this week was giving some education on “chronic tube feeders.” I told him Asher’s not gonna be a chronic tube feeder, that it’s just in the mean time. I think he pities me, probably thinks I’m in denial based on his expression when he told me to hang in there. That’s okay.  Our God is bigger than this and his “poor prognosis.” 

All IV sedation is off. Overnight his bite block came out with coughing and he had about 6 different hands in his mouth trying to replace it. As you can imagine he was not happy about that. It ended up counting against him for his methadone weaning for “agitation.” They tried to knock him out with morphine, ketamine, and versed, but he wouldn’t surrender. That’s my strong boy. 

We’ve been here long enough now that Asher isn’t the priority patient anymore. This means we’ve had less experienced and less attentive staff than when we first got here. Some have even been downright mean, lacking compassion and empathy. Please pray that we’d be assigned to staff who will be kind to him, taking their time to be gentle with him and that will listen to our concerns as we know our son better than any of them ever will. Pray that no one would enter this room that doesn’t have the Spirit of Yah unless Asher’s healing is to cause them to come to know who our God is, that they might believe in Him also.  Pray for Yah’s great mercy on us in our pleading for Him to fully heal our son. 

We are so thankful to each and every one of you who have been quite literally the hands and feet of Jesus for us through this ordeal.  We don’t know many of you and I don’t know how to contact some of you to thank you. I don’t want to take away your reward in heaven for your kindness so I’m not going to publicly identify anyone, but please know we are so so grateful for all of your meals, prayers, donations, care packages, hand made cards by kiddos, words of encouragement, gift cards, and time. We won’t ever be able to tell you what it means to us and how humbling it has been. It has certainly been a lesson on what it looks like to show up for someone in need.