Mother's Day came. After dinner was finally done, Mom decided to go up to the hospital to wait with him while I put the kids to bed. My parents were still with us, so I decided that as soon as the kids were in bed, I would go to the hospital and wait with her. At about 7:00 she notified me that we still had a couple hours.
No big deal.
9:00 pm would still be a great time to leave the hospital. I get the kids to bed and walk to the hospital not far from where we live. I arrive a little before 8:00 and look at the IV pump, which ominously says there is another 2 1/2 hours before complete. I figured it was a mistake and that I don't read IV pumps very often.
No mistake. Uggh.
The dose finally ends about 10:20. The nurse then brings in a flush. They use long IV tubing (which is much like a leash for the captive patient) and we have to push all the drug that is still in the line into his body, at the same, painfully slow rate. Wouldn't end until 11:00. What we forgot to plan for was all the lost treatment time to get other medications. Whenever he was given Zofran, we had to pause the chemotherapy. That time added up.
Now we're wishing we weren't being discharged. I warn J that it is a bad idea to mention anything to nurses from this point forward. Any complaint, especially something new, is going to delay us leaving. The nurse walks in and the first thing he does is complain about stomach pain and ask for Ativan for nausea. He has had Ativan too recently, and has to use Benadryl. After the dose is given and all our paperwork is signed, we are finally ready to leave, at 11:30 pm. J is practically asleep and needs a wheelchair to get to the car.
Not our greatest planning ever.
This morning we report directly to Pediatric Sedation for his last spinal tap and dose of chemotherapy. J is quite grumpy (can't blame him, he has inherited grumpiness when too little sleep is obtained) and not the most polite. The Peds Sedation team is a bit confused why he wasn't in the hospital since they were planning on him still being an inpatient.
(Skip over this paragraph if you don't want a medical system tangent) Inpatient versus outpatient is an important designation for several reasons. For J, it was a practical matter. Were he still in the hospital, they would have had a dose of chemotherapy already made, because the order would have been in place. The coordination of pre-treatment preparation would have been easier. Outpatient would have been fine and they could have had a dose ready if they were planning on it from the beginning, but someone along the way told them he would be an inpatient for the spinal tap. There are other times inpatient vs. outpatient becomes important, and that's with billing. I don't know with certainty that every health organization does things the same way, but in my neck of the woods things are billed totally differently if they are done as an inpatient vs. outpatient. When someone is an inpatient, the diagnosis is key. The hospital gets a certain amount of money for each diagnosis that is being treated. That money has to be divided between all the providers, units, studies, labs, procedures that were part of that inpatient stay. So when J has an abscess, if he needs Interventional Radiology to drain the abscess and it is successfully treated, or if the drain doesn't work and he still needs surgery, the overall payment to the hospital is the same (assuming they don't know how to come up with a different diagnosis to bill), but now the surgeons have to share the money with everyone else, but the amount of money to share doesn't change. If all this were done as an outpatient, the surgeon and the interventional radiologist could bill at their standard rates (which are probably higher than the amount of money coming from the same service as an inpatient). If someone comes into the hospital with an acute problem, such as a heart attack, and they have a history of cancer, there is a temptation to order a PET scan, just to check on the status of the cancer, they will say. The problem is that nobody expects the typical patient to get a PET scan when they have a heart attack, so the cost of a PET scan is not built in to the reimbursement. It would be fraudulent to also add the cancer as an inpatient billing code if there was no active treatment of the cancer. The PET scan essentially isn't being paid for when compared to the same patient getting it as an outpatient when it actually helps take care of the patient, in the expected setting. There are many pros and cons to this system which would take far more time and far more knowledge than I have to begin to explain, but the status of the patient matters to many people.
We finally had him established as an outpatient, finally put him to sleep, and finally put an end to the treatment phase of this crazy journey. This ends three months to the date from when the lymphoma was initially discovered.
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