We're Back at OHSU

*UPDATES*

5/21

6:30pm

What a maddening "system" and a completely frustrating situation we have found ourselves in.

First of all, Tony is ok. He had a 5.5-hour surgery to repair the 3 pseudoaneurysms, but they were NOT successful. They also were not able to remove the drain quite yet, and they have discovered a clot that may have come on BECAUSE of today's procedure. He's in recovery and will stay at least TWO more nights at OHSU. The IR team will discuss the plan going back in tomorrow and possibly a different surgery altogether. (This is night 3 at once again, the most sterile B&B in Portland.) But, we are at their mercy. And we are thankful to be here. Yes, today is a setback. But, Tony will fight. He always does.

Here's how pancre-apocalypse all went down starting on 5/13. It’s long. But, I promise to make you laugh! 

After calling the "on-call" doctor's at OHSU LAST Saturday (5/13) because we were having some issues with Tony's drain. (Resistance with flushing. Saline coming OUT of the placement site and NO drainage.) We were told to simply leave the drain alone, do not flush and wait to hear back because he needs to have a CT Scan "sooner rather than later" to make sure things were still in the right place and working. We needed a drain check. Soon. "Wait to hear back from us." -OHSU

We heard nothing....

crickets....

I called again Monday morning. (5/15) Same situation. Different person, though (another "chef" in the kitchen, giving different advice). She said, "Flush at LEAST 10ml twice a day." We need to get you in "sooner rather than later" for a drain check. We need this CT scan bumped up. "We may need you to come to the Emergency Department. Wait to hear back from us..." -OHSU 

We heard nothing....

crickets....

Until Thursday. 

We get a call. "Can you come in tomorrow for a CT scan at 11 am?" (A whole 3 days before our regularly scheduled exam) Of course, we jumped on it. YES! We were concerned! We'd been concerned for nearly a week. (All this time, Tony feels great. Recovery is going AWESOME. He's eating, walking, and resting when needed. He is helping me shuffle kids around to and from.) ZERO pain. He feels great. Almost "human" again. We had NO idea anything inside was "off." We simply knew the drain was NOT acting normal. (And he DID get in trouble by home health for swinging a racket. I didn't even have to tattle. They knew, like Jesus. Dr. Nelson is smarter than she looks.)

So, after the CT on Friday, I took him to my favorite soup and sandwich shop in Ridgefield. We then get a call while at the restaurant from Interventional Radiology that went like this: "The fluid has decreased, and the drain looks good. BUT...... we have found 3 new pseudoaneurysms that need attention right away. We need you to come to the Emergency Department NOW. You're having surgery tonight."

We. waited. HOURS. in the ED. HOURS. 

(Guess who approached a drug dealer in the dark who was carrying a large brown paper bag outside of the ED because I thought he was carrying my Door Dash!?) I am no longer for the hood. I have seen my limits. And I am VERY white.

We heard nothing until around 9 pm in the ED that we are going into an overnight "observation room," and that surgery would be on Saturday at 9 am.

9 am came and went. We heard nothing.....

Finally, "you've been bumped to 1pm."

1 pm came and went. We heard nothing.....

Two days in at this point. We asked if we could just leave and come back. Nope. Doing that would require us to go BACK through the ED. It's simply the only way "to get a bed."

FINALLY, surgery was going to be Sunday (today) at 9 am. 

Transport FINALLY took him to the OR at 10:10am. 42 hours later than we "expected."

Friends, I have grace. I understand. There were other lives at risk, and they took priority. HALLELUJAH and praise God that we weren't in the "life-threatening" situation we were led to believe on Friday afternoon. But, our system is broken. So broken.

We have maxed out so many insurance costs... but if we hadn't, here's another 5 nights (Two we didn't really NEED) that I would 1000% be stressing about financially. No wonder hospital beds are FULL.

Tony was offered a job on Friday night as a lab-rat since he's such an anomaly. $50 buckaroos per pop anytime he's willing to come here and help with their "studies." *snort laugh* Maybe if we didn't live an hour north and the cost of gas wasn't 8 thousand dollars a gallon, and time off work he's already had to miss out on wasn't haunting us.... those $50 might be enticing to supplement paying off these bills.  I wish they'd pay ME $50 buckaroos to let me tell them where SERIOUS issues lie and where things could be improved from a patient/family perspective, AS WELL AS nurses who freaking rock their socks off and deserve medals, raises, and extra vacation time to someplace sunny. (I'm looking at YOU, Courtney.) I wish the ones who "call the shots" could be a patient for a day and really SEE. I believe their own eyes would be opened. Two nights. TWO nights in the sterile B&B, explain your story to the 37th person to visit your room at 2:38am when you've just fallen asleep. YOU drag your IV tower over the large RAISED bump that separates the bathroom from the bed. YOU try to close a sliding door with 3 IVS and zero muscle. YOU stay in a basement room with zero windows and try to recall what day/time it is. YOU be poked. YOU explain the exact same story over and over and over for the 8,432nd time. YOU SIT in that chair for endless hours and try not to tweak your back. YOU might go crazy and gain 30 pounds in emotional eating also...hypothetically. Or, in Tony's case, lose 36 lbs. cause no one can find a feeding tube pump.

$50 to me for sharing my perspective. After my ED SNAFU, drug dealing is out for me. Too bad. Door Dashing is also. Too many brown paper bags you can't see through. I can't believe I haven't been drugged yet through my Door Dash meals. There's still time. It's a whole different hood up on this hill after 7:43 pm.

In all honesty, though, this is why they've sent so many students and residents to Tony. One resident actually told us, "they put me on your case cause it's a real-life episode of House." We're flattered. But. We still don't have answers. We are no closer to knowing WHY any of this has happened since Day 1, March 28th. Maybe he SHOULD do the study.

We are honored and thankful to be at OHSU. It really is an amazing hospital with SOOO MANY young faces and eager doctors. It's refreshing to see how advanced medicine has come. Our future in medicine is bright. 

We gone be a'ight Gen X. These young'ens know what they're doing. And the "cool" ones wear Crocs. They're gonna take care of us.

This I know.

Tony is, too.

People often say to ME, "I don't know how you're getting through this." 

Truthfully?

Stress eating. I've got work to do when this is in the rear-view. 

The ocean. I've promised myself a trip to the beach, maybe alone, haven't decided.

Prayer. My faith. My kids. Our support team.

And the fact that I can only take on one day at a time. I'm glad to not know what's ahead. I just know today. I CAN and will get through today, however ungracefully it is. 

As my friend Gloria says...

I will survive.

As long as I know how to love, I know I'll stay alive.

I've got all my life to live.

I've got all my love to give.

I love Tony, and together, we're walking through our biggest storm hand in hand. He's my person. He needs me. I need him. It's a beautiful thing. We will survive, Gloria says so.

*For those who originally followed this blog because of our 4th kiddo, Ezrah, and for those continually pray for her... she is in a flare-up. I will be calling Orthopedics this week. But her pain has returned. It's worse in the evening and at night, and she's needed OTC meds. We covet your prayers. She's a fighter, like her dad, and the kindest, nicest kid we have. True story. Don't tell the other 5.*

I will update on Tony when I have more info or something to share. Be patient with me. I'm doing the best I can. I'm wearing a LOT of hats these days, and wife, mom, and patient advocate come first. 

 Happy is with FOOD. And LOTS of pillows.