Update: Broken and Tired Father

Hey everyone,

I am back with an update for Bentley. First and foremost, I just want to say thank you to everyone who has taken the time to read our story and for the immense amount of love and support from everyone!

As for Bentley, he has had a good past 5 days. He is only requiring about 35-40% FiO2 his vent settings are pretty much the same with some adjustments to account for weight. He is off of the sedation drips (still on methadone and Valium to help with withdrawals). His steroids are down to once a day from twice a day and they are going to try to wean him down to his maintenance dose this coming week.

Due to Bentley doing well this past week, the team has decided to order his home ventilator. What this means is that they will begin trialing him with the home ventilator. While it seems like we are on the back end of this and could be going home soon, that was our first thoughts, the doctors have assured us it will take a significant amount of time for him to fully transition from a hospital ventilator to a home ventilator. The home vent requires Bentley to work much harder to breathe than he currently is doing. His hospital ventilator settings are still very high and while the home vent can handle the workload it is not feasible to go home with those settings. The main point of transitioning him is to get him used to the workload the home vent will require.

We are still looking at early 2026 getting released and sent home. While that is a far ways out we are still just excited to be making moves to make that happen.

As for me and the rest of the family, we are doing okay. I decided to take the family away for a couple of days to regroup and take our minds off the current situation, as so many people kept recommending us to have some away time just to decompress. The kiddos and wife ended up getting sick while we were away with rhinovirus and we have not been able to get to the hospital for fear of getting Bentley sick again.

We are blessed though that we have become friends with some of the nurses who allow us to talk to Bentley and send some pictures while we are not there.

Bentley has been a smiley little man since getting his glasses and feeling more comfortable. My nerves are a little less tense with how he is doing and being able to vent and talk to everyone here.

If I missed your comments or messages I am sorry, I am still trying to go through all of them since my last post. Thank you so much for all the advice and offers of just pure kindness. You all are amazing!