Dinner?

[Nevereverend Slaine]

Do you want to grab some dinner and hang out some Saturday?

[dan2]

Shit, sorry. We've had lots going on. I've been meaning to post something here but it's just been rough.

6-8 weeks ago Priscilla's father was not well. He complained of weakness and a rash and itchiness all over his body. He tried to tough it out and a few days later his neighbor found him in rough condition and he was rushed to the hospital.

He had septic arthritis in the hip which he shattered in 2013 and the hardware was badly infected. He was also dehydrated and malnourished and most likely the rash/itchiness was staph infection from the sepsis in his blood. He spent some time in the hospital to have the infection brought under control and have his health aided with fluids and food. They preformed surgery to remove the infected hardware and pack the area with antibiotic beads to keep the infection away. While the surgery was successful the recovery was not so good.

He ended up with severe pneumonia due to aspiration of some food or drink. He was intubated and given a feeding tube. The infection did not respond well to antibiotics so a drainage tube was put into this lungs and the removed over a liter and a half of fluid. At this point he was on heavy oxygen and they discovered centrilobular emphysema due to many many years of smoking (which he quit in 2013) this made it so he had to be on 100% forced humidified oxygen for most of the time.

Two or so weeks ago we received a call from one of the staff doctors who wanted to have a conference call with all of us. So Priscilla, her brother Josh and his wife Katie and I had a call with them. This fucking jackhole with no bedside manner proceeded to bluntly tell us that his condition is terminal and we should make arrangements to come down and see him so they can take him off the oxygen to die. This was all because the night prior he had a spell where his blood pressure dropped into the shitter and they had to resuscitate him. He then went on to say that a Cardiologist was scheduled to see him Monday for a procedure to find out what is wrong with his heart and told us he felt it was a waste of time at this point because all they were doing was making him comfortable and he would not recover.

Now meanwhile we had been in talks with the case manager in every attempt to get him transferred to a hospital in CT, as this was what he wanted, to be with his family. I informed the doctor that we were unconcerned with his comfort and passing, that this was about Home and Family and that they were to keep doing as they have been, keeping him alive so we could make arrangements to get him to CT.

The Cardiologist calls us 15 minutes after the meeting and tells us that he can help and wonders why we would consider cancelling the procedure (a cardiac catheterization). He preforms the procedure and discovers congestive heart failure on the left side of the heart and his function is only 20%-25% on that side. Although the results were grim it can be managed with meds. So he should not die of heart failure.

All the while we are in talks with the case manager to get him to CT. Hospitals won't take him because he is not critical and in need of an ICU. Long term care facilities will not take him because he requires too much oxygen and will not recover, so they want their open beds for people they can make well. Hospice won't take him because he does not have a do not resuscitate and do not intubate on file. We are still exploring our options and that is only step one, as the medical flight to get him here will cost in excess of 10-14K to be paid upfront.

She also informs us that although he does get strong enough to be put on lesser amounts of oxygen, it only lasts a few hours and then he needs to often be put on a bipap machine to get his levels good enough to put him back on 100% oxygen and eventually this will fail. Also, they have to do this because you cannot eat on 100% oxygen as both your nose and mouth are covered with a mask at all times or your levels will drop. They have to try to wean him off the oxygen because it's the only way he can eat solid foods, and that's procedure to try to make him well, even though they can see he never will recover.

Josh had gone to see him a month or so ago when he was recovering from surgery and paid some bills. Since we were told he is never going to recover they left from Bradley last night to go get some affairs in order. Priscilla needs to get her power of attorney on file with the county and his bank. They need to close up his house and get utilities turned off, collect some family heirlooms, firearms and his dog. And if they're lucky, get a will drafted because he does not have one. Luckily NC law states next of kin will get his estate once probate is finished.

They'll see him in the hospital and they have to discuss his situation at this point and make some decisions. He believes in some Native American animism so I had my parents send us two fetishes, a wolf and an eagle, which he has an affinity for wolves and birds of prey. Just in case, he has his totems to guide him at this point.

So as you can see, things are touch and go and we've put everything on hold at this point to focus on the situation at hand. Money is super tight because trips to North Carolina aren't cheap. Luckily the flights have been free because Katie dispatches techs at work and they earn airline miles and one of her techs offered up his miles to help. But car rentals and hotels are expensive as well as food gas and travel expenses. The four of us are just pulling together and doing the best we can with the fucking awful hand we've been dealt.

When shit gets sorted we'll figure out some time to hang out.

[dan2]

Update:

So Priscilla and her brother went down south to handle some shit.

They packed up some things from the house, got his dog and generally shut his house down for the time being.

For whatever reasons defying medical science he started to get better. We were told his condition, especially his emphysema would never get better and eventually efforts to keep his oxygen up would fail. They go down there, bring the fetishes and all... and I don't know what to believe at this point, either the doctors were wrong, or seeing his family improved his mood and his mental health improved, or his belief in spirit guides etc. All I know is against what we were told, he came off of 100% oxygen, his best days he would be on 10 liters for maybe a few hours before he had to go back to 100%, and now he's on 2 liters of oxygen.

He was transported to CT to a facility in Cheshire on Friday the 15th of July on a medical flight on a private jet, which cost just shy of $11,000.00. There were a few complications with his feeding tube which resulted in having it removed with a focus on getting him to eat real food again.

So for now, we're trying to get things settled and find a new routine, there's just so much to do.

[Nevereverend Slaine]

It sounds like a crazy ride. How's Priscilla handling it?

[dan2]

Well, he's being treated to get him back on solid foods, we're there almost every night to help him with his dinner. We took Saturday off because we need a day to get our shit together and prep all the food we need for the week.

She's doing ok, all things considered, but we're exhausted, more than anything, she's exhausted in every way possible. I blew up at her over the weekend because I see things getting done one way and she sees it another and there was no compromise so I lost my shit.

I don't mind helping with everything but it just got to a point where I felt like my voice was being ignored. I felt I was expected to just shut up and do things her way, when in reality we were both kind of doing the same thing to each other. I just push to get things done and she's tapped out.

It's tough because he's much better but still in a very bad way. I don't think he'll be off oxygen ever again and at this point I don't believe he'll walk again either. He's really weak and his joints are just shot. He was a mason for his whole working career and as a result his shoulders are gone with a history of torn rotator cuffs. His right hip that was shattered and fixed is as weak as can be. He's got massive arthritis and to even move his leg in the least causes intense pain. The physical therapist is trying to get his arms in good enough shape so that can help with his mobility, my guess is so he can operate a wheelchair.

Josh is going to have to make further modifications to his house to accommodate a wheelchair. I guess it's good that it's still under construction.

So right now the long and short of it is that we're finding a routine and we're still pretty tired from it all. There's still so much to do, he has bills, his house and all his stuff in his house. Luckily he has social security and a pension, so he has money. He has both Medicare and I believe Blue Cross/Blue Shield from the State of Connecticut, because he was a mason for the State of Connecticut, so his union benefits are still in place.

Right now I'm just trying not to think too much about everything and help out the best I can and Priscilla is trying to find any time to relax.

[Nevereverend Slaine]

At least he has his benefits. Thats something.