June 11 - Updated

Lots going on today.

First, Connor is still in pain, mostly his throat now, and the continued nausea and actual throwing up are not helping. 

On paper his MTX is 0.02, so no longer toxic. They are stopping the leucovorin and the bi carb fluids.

His creatinine is within normal range at 1.2, not back to "his" normal but well on the way.

He had an EKG this morning because his heart rate remains high, lots of reasons for it, but keeping an eye on it. The results just came back and he now needs an echocardiogram to look further.

He had a CT this morning to check the lower external drain. (Once again they asked him to lay flat and he promptly threw up again). The cyst continues to shrink, but still has goo to drain. It's no longer as liquid though, so they injected a medicine to help break it up and aid in the drainage. We'll continue to monitor this.

He has an ultrasound planned this afternoon to rule out clots as he's very immobile.

His platelets have dropped again, and this last vomit contained a fair amount of blood, so we are doing a platelet transfusion today as well.

He just had a fairly large nose bleed, and blood pouring out his nose and mouth, and it's also in his urine, so they are racing to get the platelets in. To complicate things he needs the pre-dose of benedryl and Tylenol first to avoid a reaction.

He's also spiking a very slight fever.

The surgeon checked in today at 6 am this morning (a bit frustrating as Connor can hardly talk, he was mostly asleep and couldn't ask any of our questions), the oncologist is reaching out to him again. We'd like to discuss the consequences of the drain going to the stomach and his subsequent nausea. 

Unfortunately we feel like we're in a terrible loop. He can't eat, or get up because of the nausea. The drugs help him sleep, but then he doesn't get up either because he's sleeping. But then he's not eating, and feels nauseous. For him, if he has something in his stomach it is the best to keep the nausea at bay. We've done a reasonable job with keeping the puke away with the meds, but mostly because they let him sleep. So while he's not actively puking all day, he's also not doing anything else.

As his kidneys look better today, they've agreed to allow more than just clear liquids in case he actually wants to try anything else. He winces with any swallow, but if we can some yogurt in maybe it'll help. At least if he wants to try something, he can.

They will start TPN, IV nutrition overnight tonight, to get his body some much needed nutritients. It won't solve the empty stomach, but will aid in overall recovery and hopefully give him some more strength.

We were hoping to get him sitting in a chair today, but the benedryl has once again knocked him out flat. And the cycle begins again.

If I could take any of this away from him I would. My heart aches for his suffering, and he rarely complains. His strength astounds me and frankly keeps me going.

Forever grateful for the incredible nursing staff 🧡

Update: The cardiologist stopped by, even though the EKG had some irregularities, the echo shows nothing more serious than a bit of stress, which is totally understandable. They'll continue to monitor, but unlikely an issue.

The Doppler shows no clots at this time, so unlikely an issue there either.

Regardless, they've decided to move Connor back to the ICU tonight. His overall well being hasn't changed, but he has a lot going on, adding in UV nutrition overnight to his currently running 5 pumps pushing meds into three IV's, add in the nosebleeds, transfusions, CT's etc his nurse needs more time with him. On the regular floor, nurses have 4 patients, in the PICU unit they only have 1 or 2 patients. His nurse for the last two days is exhausted! She's giving him excellent care, but she's run off her feet. The PICU is more prepared for the amount of time he needs. He'll be moving downstairs tonight at some point.