Northbound Breakdown – Hospice

I don’t have much time tonight…  Short post.   (end post says 1300 words…  Whatever!)

I got back to TriDelta late last night…   Did some payroll stuff and went to bed at midnight.  I was up at 4AM because my brain was not shutting off.  How was Summer?  Will we leave today?  What if’s wrapped themselves all around my brain till the point I just needed to get up. 

I got to the room in St. Jude hospital around 7 and Angela was the only one awake.  The skies were gray and it had started to thunder.  Normally, this would be a great day to sleep in.

Summer was alert and wound up this morning after I relieved Angela.  After about 30 minutes of me being in the room… She started looking at me and telling me the strangest stories.  It was a bit fun and exciting because she had a genuine enthusiasm for “objects on the road in front of us” and “that cleaning product commercial”.  I listened intently thinking I could make sense of any of it…  But it was nonsense.

As the morning went on though…  She was able to grab her phone and the next thing you know…  Texting and snap chatting!!!  I have no idea what she sent any of you.  Nate was watching and said some of it was probably legible???

Then…  As fast as it came…  She was out!  Like a light.  Her eyes roll back and her mouth drops open.  That’s when you know she is “gone”.  A little later the psychiatry department stopped by with their lovely golden retriever.  Summer was still laying there oblivious to the world, even as the dog was lifted onto the bed.  Nate jostled Summer a few times and told her to wake up for a guest…  When she did open her eyes…  She opened them wide and looked right at the therapy dog…  Face to face.  “Cici” she exclaimed and reached over to pet the dog on the head.

It was kind of surreal to see her brain snap that hard into reality and know what she was talking about.  If I were to ask her an hour later if she remembers… Its hard to say what she would recall.

Cici’s handler made a point to let us know how much she enjoyed her time with Summer.  She said that Summer never missed a meeting and she enjoyed their talks.

This is not the first time we have heard this.  Heather from Child Life (Youth support group) said the same thing yesterday.  Summer always made an effort.  No matter how bad things were going, she would make those Wednesday meetings.

I was talking to Nate and my parents on the phone during the drive home today… I would suspect that counselors and therapists at St. Jude are used to getting stood up a lot.  If your kid says they do want to leave the housing because they feel terrible or are not motivated… You’re going to let them stay away from the hospital for lesser-concern appointments?  Summer NEVER laid back on these.  She pushed ahead.

Quala Care came up around 9:30 to tell us that Summer was clear to leave for Peoria.  OSF Hospice was ready and they were lining up medical transport. Ground transport.  Eek!  Thats a long drive!  At first, they wanted to take Summer by herself in the ambulance.  Angela asked to go with them, you know, since it’s a 7 hour drive???  They said a passenger can only sit in the front.  It’s not the best setup, but it worked.

The ladies left with the EMT’s and Nate and I cleaned out our housing at TriDelta.  I had 2 tickets to Bonnaroo still sitting in our apartment for Saturday.  I had talked to the nurses earlier that day asking if any of them might want them.  I really saw no reason to bring them all the way back to Illinois when the big festival is just south of Nashville.  After packing up the car I headed back over to the critical care floor on 5 and found the nurses who had been helping us.  I set the ticket packets down and told them I didn’t care who used them… Even if it’s their best friend’s brother-in-law…  I hope someone would use them.  Within minutes they were googling the lineup…  Yung Gravy?  Paramore?  There were the same acts Summer would have wanted to watch.

I do believe they will be used.  I was thanked many times over for the donation.

Now, looking at Find-My-Iphone…. Nate and I were 30 miles behind the ambulance.  Ugh…  That’s some ground to cover at 75 mph.  About Sikeston is where it all came unhinged…  The ambulance stopped for gas and we passed them by.  We were not 5 miles ahead when Angela called me to say they had a tire problem on the transport.  Something was making a noise.  What???  Are we on a prank show?  I feel like curve balls get thrown at us on purpose anymore!

I stopped and filled up at Love’s while we waited for some news on the ladies.  Angela called and said they had a flat and were now trying to see if they had a jack.  They did not want me to come help (Stupid liability laws) so I we went on ahead to get to Tremont and grab some stuff for hospice. 

They ended up being 2 hours late!  By the time they got a jack and fixed the tire remotely with a service truck…  Summer and Angela had been hanging out in the back of the van for nearly 2 hours.  There was a Dairy Queen close by, so that made it a little more bearable.  Summer had 2 bites from what I heard tonight.

Nate and I had a great convo all the way up.  Sad this is how we had to have time one on one for the first time ever.

Hospice at OSF had staff and the lead doctor comes back to greet us after hours.  The doctor interviewed Angela and I to find out what our expectations are for their services.  This was a fitful conversation and I am not sure either of us even knows what a reasonable expectation is.  After sitting with her for the last 2 days and seeing her come and go out of reality…  I just want to make sure that if the real Summer is still walking around in that brain…  We give her every chance to communicate while she can.

Angela is dedicated to making sure she is not suffering.  Starvation of food or water was her hot button.  What can we do?

The doctor said the cancer will be the one deciding the answers to our questions.

The doc really wants Summer to relax after this massive travel day.  She can have as many guests as we want… But she really wants to keep her stimulation down.  So, I will say this.  If you come, and you are welcome too…  Please don’t expect her to wake up and tell you stories and entertain.  She needs some rest on Thursday and that is the main priority.  I seem to recall this was how we operated back when folks were filing into the room at CARLE.

Let’s keep it low key and we can talk outside once you get a chance to see her.

That said…  Tonight after being put in her room… Summer was a pistol.  Giving us all crap. Laughing about whatever she had texted Connor earlier in the day…  Making fun of me and having Nate get her damn medical tag off her wrist! She could still be awake right now for all I know…  And I feel sorry for Ang and Nate if she is.

Nate, like a champ, is sleeping on the medical recliner for the second night in a row!!!  He’s young, he can take it.

Thanks for the 1 million notes of encouragement today.  You all rock.  Summer is in Peoria…  This is a great relief.