April 7 - Updated

So Connor said he didn't get much sleep, so I suspect he'll nap on and off today. He has no interest in anything (phone, computer, book etc). So I know he's still in pain. Although he's talking more than yesterday so that's an improvement.

They've moved him to self controlled pain meds, so he can press the button himself when he's getting too uncomfortable. (Lots of smaller doses, rather than one large one every 4 hours). Hope it helps. 

His creatinine is still high, so the kidneys are still not too happy. They continue to hold off on the CT of the pancreas because the contrast needed is hard on the kidneys too.

I did ask why we need the CT, we are all confident it's likely pancreatitis, but there is a chance it could be gallstones, and with a CT they can better determine the type of pancreatitis, as well as rule out the stones. They did another chest x-ray to make sure fluids aren't gathering where they shouldn't.

The infectious disease doc continues to monitor him as well. Thankfully he doesn't have any rashes from the antibiotics (it's a penicillin "cousin"), because he's had reaction to penicillin in the past. 

They added the leg compression things today too because he isn't allowed out of bed. So far he doesn't hate them, but I'm sure that will change. Although he's remarkably easy going throughout all of this.

He's finally allowed clear liquids, so he's quite happy to have water this morning (they let him have one drink yesterday, then put him back on ice chips).

The high flow oxygen is also bothering him (it's high up the nose, and pushes the air in, and is moist so it drops from his nose), they turned it down and are hoping to wean him off.  

His Lipase has reduced by half but is still over 4,000. His blood glucose remains elevated (although no longer high) and they are continuing to treat with insulin. (Why make his poor pancreas work any harder!). They held off last night and it went up as a result so they are adding back the long acting Lantis today.

The oncologist also continues to monitor him several times a day, and confirmed that he will no longer receive the leg shots. I know the team will meet to discuss the protocols to restart treatment when he's feeling better. 

Overall, I think he's doing better, but he's still very pale and in a fair amount of pain. We continue to take things one day, one hour, one minute at a time.

So we joked about the bandaids again yesterday and the PICU nurses win the prize for the best one! Not sure you can see it well enough, but they found him a poop emoji bandaid! Fitting right now, he feels like poop, and this whole situation sucks!!

Thank you to everyone for reaching out! Your thoughts and prayers are so appreciated. Right now there isn't much else we need, but I will reach out if we need anything for sure!!!

Update 5:00pm: pretty much no change at this point. They are still concerned with the amount of fluid he's retaining (and gas), so they are giving him a diuretic to help. It takes more energy than he has to get on the commode (beside the bed) and then back again. He's suffered countless indignities today and does nothing but thank the nurses throughout. He's being a very good patient.  

They did an ekg and an echocardiogram and I spoke with the cardiologist. Unfortunately because of his pain they aren't able to get too clear a picture, but there doesn't seem to be too much fluid around the heart, so while they will continue to monitor,it isn't their main concern, which is good.

The last creatinine level is down finally, but haven't spoken to the Dr about it yet. Hopefully another low level tomorrow will put him back on the list for a CT. 

His blood glucose is still high so he continues to get corrective insulin.

That's about the news for now. Kirk will be here soon to take the evening shift.