But I only had two hands.
(This song has been on pretty much every time I'm in the car over the past two weeks. Here's my fav cover of it for you.)
So, on Sunday, October 20th, I decided to clean out the garage. And then at noon, Jonathan got the itis again. The pancreatitis. This time it was much, much worse than last time. He was basically screaming in pain. We loaded up as quickly as possible, dropped off the kids with Adrian and Abby, and headed to the ED. I'm not sure if it was the profuse sweating or vomiting that did the trick this time, but they whisked us right back to triage and then to a room in the ED.
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| Drip, drip, drip goes the Dilaudid. |
They were pretty quick to let us know that it was indeed pancreatitis. He had an ultrasound to check for gallstones, various nurses and doctors asked him about his drinking habits, and everyone sort of shrugged and wondered why this was happening again (something like 80% of pancreatitis cases are caused by alcoholism or gallstones - neither of which Jonathan has).
So around... 10 PM or so? We were up on the sixth floor again, just a few doors down from where he was in September. I headed home to sleep. The kids were passed out at Adrian and Abby's. Monday morning I got up, got the kids, and dropped them at school while I went to work. I figured this hospitalization would be pretty much like last time - a few days of fluids, no food, and pain meds and then he's good to go.
I called to check in around noon on Monday and found out this time was going to be different. He was in the Cardiac Intensive Care Unit. The first bit of thanks goes to my coworker and friend, Emily, who gently told me that I should go. I was in some kind of shock and was just going to stay at work. It was the day of a huge project launch.
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| And it came to me then that every plan is a tiny prayer to Father Time. |
P.S. That Death Cab song played in my head pretty much constantly and I sort of hated them for writing those lyrics. Whew.
So I don't exactly remember the timeline from there. I think I got the kids from school on Monday and then went home with them, and I cried and cried and cried. And I called the nurse all night for updates, and cried more, and then took the kids to school in the morning and went back to the hospital.
And then on Tuesday afternoon, I left the hospital early to get something from home? I don't even remember. But then I was going to get the kids from school and then go home for the evening again. But I was somehow just driving around Durham crying. Like very ugly crying, and that Wake Me Up song was on, of course, and I got a text from my sister-in-law, Abby, and it was basically like, "Here's what's going to happen. You're going to stay at the hospital with Jonathan and we're going to take care of the kids and everything else." And so I pulled over in some random parking lot (I was seriously just lost-driving around town, hysterical. It was not pretty) and I cried some more. And I went back to the hospital. And I was so, so thankful. So the second huge thanks goes to Abby, and Adrian. Because what I needed more than anything at that point was to have someone else tell me what to do.
Jonathan was... okay? His heart rate was really high, he was on oxygen because his oxygen saturation was low without it, and his blood pressure was relatively low. He had tachycardia and tachypnia. He was on strong pain meds and they were doing fluid resuscitation - basically just pushing TONS of IV fluids. He wasn't sleeping very well, but he could rest a bit. I mostly just watched.
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| Hospital sushi... would not recommend. Adrian brought me some delicious fresh sushi the next day to undo the sketchy sushi experience. |
On Wednesday, things started to get worse. I mean, they weren't really getting measurably better at that point, and then it turned and things were worse. Jonathan's abdomen was getting more and more distended, and he was struggling to breathe. They did some imaging - x-rays, CT, MRI (technically MRCP, but they couldn't use contrast because his kidneys were not in top fighting form). There was more waiting. A surgical team was brought in for consultation that night, to see about somehow draining his abdomen. But a couple bedside ultrasounds didn't reveal any real fluid pockets to drain. It seemed the distension was caused by general inflammation of all of his organs or something. They talked about abdominal compartment syndrome. But the surgeons weren't really keen on opening him up at that point. So we waited.
Wednesday night was the worst. Jonathan didn't sleep well at all. He was having a hard time breathing and even talking at that point. He was very uncomfortable, and wanted the tubes out of him (he had various IVs, a NJ tube to deliver formula straight to his intestines, and a foley catheter). He'd only been allowed ice chips since Sunday. He was asking me to help, and I couldn't, and I broke down when I felt like the nurse wasn't listening. That at least got the resident to talk to me more and explain things clearly.
On Thursday morning during rounds, one of the Cardiac Fellows mentioned putting him on a ventilator. Not long after that, I met some kind of nurse who is in charge of helping the loved ones of patients, and the social worker, and the chaplain. It's unnerving to meet this team of people. It felt like the death squad or something. Jonathan was not doing well. I'd kinda kept it together until that point. Sorta. But then they were talking about putting a NG tube to drain his stomach, and I went ahead and lost it. Luckily, the social worker and nurse person were right there, and Jonathan's cousin Amy was there, and we left the room and went and talked with the social worker. And Amy was able to ask coherent questions and be about a million times more calm than I was. So another big thanks goes to Amy for that. Because I was a mess. And when we got back to the room, the NG tube was in and Jonathan was feeling so much better. Apparently when they put in the NG tube, about a liter of fluid came out immediately.
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| My favorite GI Fellow, Dr. Watson, drew us this picture of the pancreas and what might have been happening. |
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| There's no comfort in the waiting room. Just nervous faces bracing for bad news. |
But, thankfully, that morning (Friday) Jonathan was doing so much better. When I heard them say, "So... floor?" during rounds, I knew that he was getting discharged from the ICU. By about 4 PM that day, were were settling in to his room on the 8th floor.
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| Adios, Cardiac ICU. You will not be missed. |
Oh my, I forgot to mention so many people who helped in so many ways during the epic hospital week 1: my work for having a delicious lunch from Nosh delivered, my supervisor Rebecca and co-worker Emily for bringing a fantastic care package, Adrian and Abby for ALL THE THINGS including caring for 4 children aged 6 and under, digging through the messy house to find clothes for me, bringing trashy magazines and snacks to distract me and keep me going, Amy for visiting multiple times and always bringing coffee, Jonathan's mom Terry for visiting and watching the kids so I could go back to the hospital, Brandi for brining me my favorite salad from Wendy's and for taking the kids to give Adrian and Abby a break, and so so many people for offering help and good thoughts.
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| No wheelchair shortage here. |
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| The kids visited on Saturday. Thanks to our nurse Sooah for bending the rules and letting them see their dad. |
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| I escaped the hospital walls to play at the park with Gideon, Edison, Evelyn, Linus, and MeeMaw on Saturday. |
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| Spotted on the pediatric floor. What does the fox say? |
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| No view of Duke Chapel this time. |
The weekend was long and tedious. I remembered from my awful NICU stay that nothing seems to happen at hospitals on the weekend. This was quite true in Jonathan's case, because GI doesn't have a service at the hospital, so they pretty much only work during regular business hours. That means that during the weekend, we were left in the care of the General Medicine team. It was frustrating. Jonathan hit the one-week without eating/drinking anything mark (he had a tiny amount of formula through tube feeding until he got all distended and they cut that off). He was getting pretty discouraged.
But, he slowly, slowly got better.
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| He's playing League of Legends! Oh happy day! |
And they finally let him have apple juice...
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| Holding his NJ and NG tubes out of the way. Nothing will stop him from drinking the sweet nectar of the gods, apple juice. |
There were more x-rays, another CT scan, more consultation between surgery and GI and general medicine. More attendings and fellows and residents and med students to meet. I had to go back to work, because someone's gotta bring home the bacon. So week 2 of the hospital stay was better for Jonathan but probably more tiring for me. I spent the days at work, got the kids home and somewhat settled with Terry, and then went straight to the hospital for the night.
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| Evelyn made it to "wear your costume to dance class" day after missing class the day her dad was admitted to the ICU. She was stoked to be "a mermaid from Peter Pan" |
Evelyn had her first dance performance at a local mall on Tuesday night, and we made it to that. I showed up to work. I got some stuff done. I participated in the Halloween festivities.
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| Major thanks to my co-worker and friend Ashley who made these killer masks for our whole team for the Halloween party at work! The other side of my sign read, "Hey, I just met you, and this is crazy. But I hate you." Grumpy Cat is our team mascot. |
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| My awesome team at work. |
I brought the kids to the hospital for trick-or-treating and they were quite impressed to get candy from their dad. And to see all the exciting things you can see at the hospital.
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| Captain Hook and Peter Pan |
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| Mermaid strikin a pose |
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| Burning off energy in the hospital courtyard. |
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| Checking out daddy's hospital bed. |
On Friday afternoon, Jonathan was released back into the wild! He's still very tired, and somewhat nauseous, and definitely not back to his old self. But we're happy to have him home. I think this week might be even more tiring than the ones before it, because now I have both kids and Jonathan needing me pretty much all the time. But the good thing is that he's okay. We don't really know what caused it. We don't know if there's really a way to prevent it from happening again. He has some follow-up appointments scheduled, and I'm hopeful that the GI docs can continue to work with us and help sort things out. And now we just wait for the bills to roll in. If minor pancreatitis with a 3-day hosptial stay racked up a bill of $17k, what would you bet a two-week stay with multiple specialty teams involved and a long ICU stay will cost? I'm betting it has to be over 100 grand. It's a good thing we were already committed to being broke ;) Whew.
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