HIPAA and Losing My Job (Almost)

The Health Insurance Portability and Accountability Act is an interesting piece of legislation that came close to costing me my job today.  OK, maybe a bit dramatic, but maybe not.  Being a physician in the same hospital as all of J's doctors does create potential hazards.  My hospital takes an extreme position in interpreting this and all other laws.  They don't want to even come close to the line.  As such, any visit into J's medical chart can be grounds for discipline including up to termination of employment.  I always need to be on my toes.

PET Results

The PET scan was this morning.  While we were home, J seemed ready to cooperate.  One needle poke and he would be finished, then he would just need to lie on a table for 20 minutes.  Good plan until he had to drink nasty oral contrast material.  He decided he liked lemon flavor much better than raspberry flavor he was given.  He decided he needed to urgently go to the bathroom right before they were ready to inject him.  He decided (remembered, OK never really forgot) that he hates any sort of shot.  He told the family at dinner that he learned that even small needles hurt.  He finally was injected.  An hour later he was ready to be scanned, well kind of.  It took some convincing for him to allow us to position him on the table correctly.  The techs were patient and kind.

Weekend Update

Been a few days.  Here's the summary.  J made his own lunch the other day.  He likes to drink from a straw, and he needed a new one, so he climbed up on the countertop so he could reach the straws on the top shelf of our cupboards.  He spent a good amount of time doing schoolwork with his teacher, who has been his tutor.  He takes his medicine with only a little complaint.  He sleeps through the night without waking to go to the bathroom.  He wears clothes and doesn't complain of any surgical incision.  He beat Mom at Monopoly today while most the rest of us went to church.  The only symptoms he is having are pain when he urinates related to either the ureteral stent or the leftover stones.  Not nearly as bad as what sent him to the hospital earlier this month, but still there.

Stages of Grief

As I have been at this conference, no longer involved so intensely in the daily care of J, like so many who have been reading this, at the mercy of someone else to tell me what is happening, I've been surprised to see what my feelings have been about the lymphoma.  The dominant feeling is disbelief. It's hard to believe all that has happened over the last 10 weeks.  Did he really go through all those surgeries?  Has he really taken more medications than I have in my entire life?  This is true even if we exclude the chemotherapy specific medications.  All the other medications he has needed are far more than I have ever taken.  Is his hair really gone?  Is he really at risk of life-threatening infections right this moment?  Has he really missed school every day since the mass was found and will miss the rest of the school year?  Is this a dream I will eventually wake up from?

Round 3 Finished

Yesterday ended round 3 of chemotherapy and finally a return home.   The chemotherapy ran continuously until Sunday evening.  The choice was to either send him home Sunday night so he could be back in early Monday morning for his spinal tap and the last dose of chemotherapy, or to keep him Sunday night so he could continue to get IV fluids, particularly since he has had the problem with kidney stones, and then he's already at the hospital for the spinal tap.  He stayed in the hospital.  I abandoned the family on Saturday to go to a conference out of the country, so Mom is taking care of things.  My parents are in town to help, so she's not totally abandoned.

Patients and Numbers

When I was an intern, my upper level resident shared a valuable lesson she learned in a tragic way.  She had a patient who was very sick and needed serious medications to keep the blood pressure in an acceptable range.  All night long she would increase the medication, get good results, and then the blood pressure would drop some more.  She repeated the cycle many times throughout the night, feeling quite pleased she had kept the patient alive through the night.  When the attending came in and assessed the patient, he informed my upper level resident that although she had successfully maintained the blood pressure, she had killed the bowel in the process and the patient would die soon.  The medication works by clamping down the blood vessels in the arms, legs, and bowel, leaving more blood to stay in the heart and get to the brain.  Not bad when it's only the arms and legs, but once you stop sending blood to the bowel, it dies, and that's not compatible with life.  My upper level resident felt horrible.  The attending went on to say it was OK, the patient was in a hopeless situation either way, but that there's a valuable lesson to be learned:  Don't get so focused on numbers that you forget to look at the patient.  (I hope that my non-medical friends who read this don't find this story too disturbing, but I remind you that death is very natural, and it happens to everyone.  There are a lot of very important lessons to learn in medicine and in life related to someone's death.  The doctors involved are not uncaring, but when you work in critical care, you know a lot of patients are going to die, and it's a valuable time to teach.)

Self Advocacy and Flexibility

Last night at 1:00 the nurse is bringing in a new medicine for J.  It was a medication from home to adjust urine pH, but they had temporarily stopped because they would be adjusting the urine pH other ways.  The dose was twice what he had been taking at home (I tested urine pH so many times to get us to the right dose) and it was being started in the MIDDLE OF THE NIGHT.  You may think it's not such a big deal to start a medicine in the middle of the night, but then that's the schedule we get stuck with.  1 am and 1 pm.  I did something I do very little of, I refused the medication.  I said it could be started in the morning and that we could re-address the dose in the morning.  (I learned during the admission for kidney stones that bad schedules get perpetuated.  J missed his regular time for the Neupogen shot (the one to help make more white blood cells), and they didn't give it to him until about 11:30 pm.  Next night, rather than giving it at 8 pm like we had been at home, they woke him at 11:30 pm to get the dose).  The issue continued the next morning when the daytime nurse told me that the pill cannot be divided in two (as we had been doing for several days) and that he had to have the entire pill.   Second time in a day that I was refusing medication until we could talk to the ordering doctor to clarify the dose.

If Things Can Go Wrong...

The night was supposed to be great.  A friend had set up glow-in-the-dark Ultimate Frisbee for a bunch of guys.  It was going to be a great way to let off some steam.  Relax outside of the hospital.  Get some much needed exercise...

Serious Business

This continuous infusion of chemotherapy is serious stuff.  More determined than a stork delivering a baby (highly accurate medical information on this blog).  More consistent than the mail service.  No breaks for a shower (although J thinks that a bed bath is key to happiness).  His IV pole is his new constant companion and must be with him wherever he goes.  This is what I found when I came into the room tonight:

This is his IV pump.  What is the meaning of this?

Sprints and Marathons

I have never run a full marathon, but last fall I ran a half-marathon.  Many of our experiences over the last months remind me a bit of running and can be divided into the sprints and the marathons.  This is true from both the runner's point-of-view as well as the spectators'.  Sprints are full of speed and have intense energy levels.  They are fun to watch and only require a short moment of attention.  Marathons (easier to say than half-marathons, although I'm speaking a little beyond experience) are long and steady and require perseverance.  The observer has to pick strategic spots to cheer on the runners, but only catches short segments of the excitement, usually the beginning and the end and a few spots in the middle.

Round 3

Today we started the third round of chemotherapy.  I think today it happened the way it was supposed to.  Here's a rough outline of the first day of this round of chemo.

A Moment to Rest

The last several days have been a great blessing.  J has been feeling pretty well.  He still gets some pains related to the kidney stones or the stent, and he still isn't what he was before this all began, but in the last two months he has not been better than these last few days.  He takes medicine without a fight.  He reads books (including finishing two books in three days from a series his class from school gave to him).  He plays games with his siblings.  He laughs.  He eats.  He eats more.  He went to his sisters' violin and cello recital.  He is even planning on attending part of church tomorrow.  It's sad that we go back in for the next round of chemotherapy on Monday and beat him down again.  But this moment is a cherished treasure for us, and a reminder that eventually life can become more normal.  It will never be the same as it was because every experience will change us for better or for worse.  And who says that we want to be the same as we were before?

The Stent

Surgery was quite successful, and the best surgery that we have had so far (no incisions to heal).  They put a scope in the bladder so they could have a look around and looked in the ureter on the side of pain.  They found quite a few little stones.  Not a surprise because that's what we expected.

Happy Birthday to Mom!

Today was Mom's birthday.  J wanted to be part of the excitement.  He joined us for an omelet breakfast, although he could only eat a small part of it.  He gave a surprise gift with his labs showing that his white blood cells were back to normal range and that his platelets were improving.  Hemoglobin (a measure of red blood cells) on the other hand is still going down, almost low enough to receive a blood transfusion.  He joined the family for a trip to a cave in the region.  I don't know what happened from that point, but he seemed intent on no longer joining the family in birthday activities.

Happy Easter

J's energy is improving.  His mouth is getting a little better and he has uttered some words.  His color is improving.  Looks like we are coming out of the pit.  Nice to have a season of peace.  Nice to have a moment for some reflection.

Epistaxis

It has been so nice to be free from the hospital for over a week now.  Last night Mom and I were enjoying a little quiet time watching a movie for date night.  J came down around 10:30 with a whimper and tissue plastered to his nose.  He had a nosebleed, or epistaxis (your guess is as good as mine as to the correct pronunciation).

One Miserable Little Boy

I must say that being home in the weeks between chemotherapy is better than being in the hospital, but poor J may disagree.  This is a quick rundown of his woes.