Update: Tired and Broken Father

Hey everyone,

It has been a little while since I have given an update. Bentley has been struggling the last week or so. He ended up back on nitric oxide due to pulmonary hypertension. He needed some more sedation during this time and they had to increase his steroids. We have been told by the doctors, during a care meeting, that we should not expect to leave the hospital before the 1st of the new year. This will put our total time in the PICU close to one year.

While I sit here and try to wrap my head around that, I know that this pain I feel is only temporary. I continue to give updates on Bentley but have not really gone into me and my feelings on the matter. After my initial post I scheduled an appointment for a grief counselor. During that time I spoke to a therapist and he determined that I could possibly benefit from talk therapy as well as medication changes. However, I had to go to another appointment to start both of those. The next available appointment is not until the end of June which kind of leaves me in limbo until then.

I have been in a much better headspace since my initial post and the things that I was depriving myself of; personal hygiene, fitness, appetite have improved since the amount of love and support this community has shown me. Even with the news that Bentley will more than likely be blind growing up, and him having some difficulties have not been able to knock me back down. However, with the news that there is very little chance of my son leaving the hospital until the end of the year going into next year has brought my world crashing back down, to reality I suppose.

We continue to make life changes to try and improve my sons life, we have moved closer to the hospital, we have taken the time off of work to be there every single day, we continue to be there for our other children and still this is all consuming. We find little time for ourselves and we still revolve our lives around the hospital.

My oldest son, 6, has epilepsy and autism, we thought the epilepsy was under control (15 months with no seizures) however on Sunday, as we were getting ready for church, Peyton had a seizure that sent us to the hospital for him. They did some med changes and hopefully that will keep those under control.

I hate coming on here and expressing my feelings, I just am able to articulate it better in a written form than I can verbally. I talk to my wife and she understands to some extent what I am going through but at the end of the day she is grieving as well and it is hard to burden her with my pain while she tries to cope with hers.

I apologize for the extended post, I just needed to vent a little more and you all have helped me so much that I felt this was the best place for it.

Thank you all for the love and support you have shown me and my family during this time! I truly appreciate each and every one of you!