May 27

Buckle up, this is a long one ...

It's been a long day back and forth with all the doctors. Kirk is in meetings tonight, so he took the morning shift today. First, Connor is in better spirits, but still nauseous. They are going to add Marinol to his anti-nausea meds to give him some relief. (a cannabis based drug). This was relayed to me by Kirk, so I asked if they would share it with us too, but not sure if they'll actually laugh or worry we'd take his meds!🤣🤣 They put him back on clear liquids because of the diarrhea, but he's not hungry anyway. 

They are down-grading him back to the regular pediatric unit today. Just waiting for an available bed. His hemoglobin tanked so they are doing a blood transfusion today as they wait for the doctors to figure out the next plan. 

I spent the morning communicating with his school, picking up a laptop and delivering it to the hospital as he preps to take his AP test on Tuesday from his hospital bed. (Of course, we'd love him home, but we're headed into a long weekend, there's a chance he'll still be here, and need to do the prep now!)

Going forward:

We got a preliminary test back from the "goo", and it has indications of a staph infection. Not sure what kind, waiting for more results. They are obviously continuing the antibiotics. Hopefully this explains the fevers.

The infectious disease dr thinks it's in the drain, the IR (Radiology Interventionist) says it's internal in the goo itself. We suggested they "duke it out" between themselves and let us know what they decide. 

Dr. Sui, the GI Dr that does the internal drain, stopped by to see Connor between 4 and 5 am this morning. He told Connor he wants to go forward with the internal drain, and was going to talk to the IR about possibly moving the outside drain. It was 4am and Connor didn't ask any questions about timing. It took the rest of the day for all the other doctors to talk to Dr. Sui themselves.

Dr.Sui just called us directly. He's actually off this weekend, but wants him to have the surgery for the internal drain tomorrow. That part of the fluid pocket is behind the stomach and pressing on it, and a likely cause of the nausea. He's recommended another surgeon, and we happily accepted to move it forward for his relief. He will be under anesthesia, but they go down the esophagus to put the drain in, so not traditional surgery, and less chance of infection. (He's got enough of that already!)

They've decided to leave the external drain as it is until they know for sure about the infection, or if it stops draining with the internal one working.

So I finally feel like we have the beginning of the answers, and hopefully he'll ACTUALLY get some relief from his symptoms this time. 

Still no answers on the mysterious fungal infection, so we continue the anti-fungal until there is no evidence of infection. Still not happy with this answer, but putting it aside for now until the bacterial infection is clear and the nausea/pain is gone.

The nephrologist has declined to consult at this time. As his body is definitely undergoing continual trauma it's very likely the cause of the high blood pressure. We don't disagree, pinning most of our hopes on this internal drain working faster.

I have the total drained at 2850ml as of yesterday afternoon. However, yesterday we estimated it was 50ml in the bag based on the bag's markings, but when the nurses drained it into an actual measured container it was 95ml. So I can imagine we were off by about 50ml each "dump" possibly another 500ml total due to the shape of the bag. As Nana and Ross say that's about 4.5 wine bottles worth of liquid. (~3350ml) The CT scan measurements are:

May 3 - 16.7cm x 11.2cm x 15.4 cm

May 26 - 11cm x 7.8 cm x 10 cm

It's definitely shrunk, but still considerable size given it's in his abdomen.

If anyone else is so inclined to guess the actual amount of fluid based on the size left, be my guest, I just know it's a lot, and no wonder he's sick!

(As the internal drain will go to his stomach, and subsequently out the usual way, we'll never really know for sure!)

Okay, I think that's it. I'm headed up shortly if there's more I'll update, but I'll likely wait until after surgery tomorrow. 

Thanks to everyone for checking in!!