The whole story

 After the post about writing the obituary, I suppose it's only right to tell how we got here.

A few posts back I talked about John's cancer and the immunotherapy and how we were hopeful.  That was September 30th - a Friday.

That was a rough day at the hospital, John was cranky for obvious reasons and who do you take things out on when you're miserable?  Your favorite person in the world, so it was a rough day for Susie as well.   

We made arrangements for Lucy to spend the day with friends, so that I could go with Jason to the hospital Saturday, and that Susie could take a day off.  She was able to decompress a bit, have lunch with comfort people and reset her system.

The CCU wouldn't let me into see John, but I was nearby and Jason could come out into the waiting area to talk and take a break.   One of the nurses said that the plan was to move John back to the regular hospital floor that day.  While that would have been nice because I could have then gone in to be with him and Jason, it wasn't realistic either.    John was sitting in the chair, which is therapeutic in that it helps strengthen your core muscles after being in a bed for two weeks.  However, he was really groggy, aggravated and disoriented.  He hadn't been sleeping and the meds given to help in that area sent him all over the map.    I'm reminded of the time we gave Lucy Benadryl and instead of knocking her out like it does to regular humans it wound her up and not only was sleep impossible, but she was practically hyper.  I think the sleep meds were doing that to John.

Jason had a consult with the doctor, who agreed that John shouldn't be moved just yet.  I don't think John was alert enough to have any meaningful conversations with Jason.

Sunday was a better day, but not great either.  He was sleepy all day and the nursing staff had him propped up to avoid bed sores.  Jason and Susie were home in time for a regular dinner.  

Monday morning as Lucy was headed out the door to school Jason saw he had a voicemail from the hospital.  At 3:45 am or so, John's breathing became too shallow, and the hospital intubated him.   

Originally, John entered the hospital with a DNR, but when they started the last round of therapy to try to reverse the effects of the Mycenae gravis the doctor said it might make him weaker before it made him better and because his heart rate had been so low previously that they might need a temporary pacemaker or to intubate.   John agreed to modify the DNR to allow the infusion to work.  

Jason and I had a cry, and then a talk about what John would want.  We discussed the questions to ask the doctor - like, how long before we can know if the infusion was working and he could be taken off the vent, or when would a breathing test be done. We assumed three days.  We know he wouldn't want to be on life support for long if it was just for the purpose of sticking around but in that state.

We also researched the recovery from Mycenae gravis and at this point it was clear that if John recovered enough to leave the hospital that he would have 12-18 months of therapy to be able to hopefully walk with a walker but would need help getting out of bed and to the toilet for months and months - if not forever.

Susie arrived at our house quickly and the three of us had a tearful talk before they headed to the hospital.  When they left I truly believed we would be having the next conversation in three days, after a breathing test.

I sent the daily message to the family, and then had a couple of tearful phone calls with the cousins.  

Jas and Susie had a heart-to-heart talk after talking with the doctor in the morning and they decided to remove the tube.  Jason called and told me to come down, he wanted me there and now we had permission to have as many people in the room as we wanted.  This is the sign that even the hospital staff knew it was time to let go.

I arrived at the hospital at 4pm and was there to meet the oncologist and listen to her apology (basically).  She talked through how unusual John's case was, and how at every step nothing worked as expected.  None of this was her fault obviously, but as she talked I half expected her to suggest another route to help John recover.   The CCU doctor returned as well, and we asked what the next steps would be.    The two doctors needed to write orders for meds to make John comfortable and then they would remove the intubation equipment when we were ready.  

By this time Marty & Lynne had arrived and we all had a moment to say what we needed to say.  

We stepped out of the room while they removed the equipment and came back in and sat with John - talking to him, laying hands on him and I'm sure I wasn't the only one saying prayers for him.   The nurse came in to check on us and noticed that John was struggling to breathe, so he ever so kindly put his hand on John's shoulder and told him that he was going to give him something to help him relax.

Well, after the nurse did that and left, John's breathing wasn't as labored and then just gently stopped.  There was no death rattle, or dramatic music or anything, he was just not there anymore, and after a few minutes I asked Jason if I should go get the doctor.  Susie asked why, and Marty told her that John was gone.  She seemed confused, and said "when?", Marty said "it just happened".  

The nurse came back to check John and again, put his hand on John's shoulder and said - just to him, "I'm going to listen to your heart now."  Later, when he removed John's wedding ring he spoke to John to let him know what he was doing.   Maybe it was a show for us, but I really don't think so.  

We then worked out the details of what to do next, said goodbye one more time and headed home.  We were back at the house by 6:30pm.  

Jason was the one who told Lucy and we all had a big cry.  

The rest of last week was one "must do" activity after another.  We don't have a funeral date yet because we are waiting on the Priest's availability.  There are more things to do this week, but we're back in the office - sort of I'm here, but blogging.

So, that the story.  I'm sure I missed some things, and I know I left out the details of what was said to John in his final moments.   Those things were for him.

Jason and Susie are doing ok but I think we're all in a bit of shock.   The timeline between the 16th of September and now is just mind boggling.  I overheard a snippet of a phone conversation at the grocery store yesterday and it went like this "well, you know it takes three days for your mind to even process that someone has died."  Sounds about right to me.