Just Throw Out What You Can't Use: Pharmacy Frustrations

After this latest bout of cholangitis, the doctors decided to switch Adam's preventative antibiotic from Septra to Augmentin. The theory is that he might be getting resistant to the old drug and that this new one could do a better job of warding off cholangitis.

I went down to the pharmacy the day after we were released to fill the new prescription. The first hurdle to clear was the fact that the paper prescription they had given me at the hospital didn't match the strength of the prescription entered into the computer for our pharmacy. I waited about twenty minutes while the pharmacy tech sorted things out, and when I came back to the window she proclaimed that actually the prescriptions were the same--just written differently.

I received the bottle, filled with a white liquid, and the pharmacist came over to give me the rundown on how to use it. "It needs to be refrigerated, and it only lasts 14 days after it is mixed together, so even though your prescription is for a thirty day supply, you'll have to come back and get another prescription filled in two weeks."

"Will I have to pay for the next bottle?"

Blank stare.

I explained that my normal copay is $15 or 50%, whichever is greater, for a thirty day supply of medicine. If I was already paying $15 for this half-filled-prescription, why should I have to pay $15 again for another half-filled-prescription two weeks later?

"Oh, I understand. I guess I can mark that you have already paid for the next bottle."

"Thanks."

Later that afternoon I got a phone call from one of that pharmacist's associates. "The pharmacist you spoke to earlier today made a mistake. The medicine actually only lasts for 10 days once it is mixed up, so you'll need to come in after 10 days to get another bottle."

Anyone who has ever waited in line at a pharmacy with three kids two and under in tow will know that this is not a consummation devoutly to be wished.

I tried to troubleshoot the problem and avoid more frequent trips to the pharmacy. "When you say 'mixed up' is this some sort of technical pharmaceutical term, or does it just mean 'mixing up the medicine' in a normal way?"

"The medicine is a powder and it has to be shaken up with an exact amount of water."

"So, could you just give me three bottles of medicine when I come in each month and I can mix it up myself every ten days?"

"Are you sure you would feel comfortable doing that?"

I thought back on the countless bottles of infant formula that I mixed up during the twins' first twelve months of life? "Yes, I think I can handle that."

"All right, but when you come in again, make sure you bring your receipt for the first batch. We need to refund you the $15 and then charge you the new amount $22.63 for the month's supply."

I'm pretty good with math. I can even do it in my head sometimes. Why should a thirty day supply broken into (roughly) two batches cost $15 when a thirty day supply broken into three batches costs $22.63? It's the same amount of medicine, right?

I asked about the price discrepancy. She answered in a foreign language--possibly Klingon? It soon became apparent that a face-to-face conversation would be needed to sort this out, so I said my good-byes and resolved to address the problem later.

After ten days elapsed from my first pick up, I returned to the pharmacy to get the next two batches. I was delighted to see that they had the powder and water (93 ml carefully measured out in each bottle) all ready for me. It was time to broach the subject of payment. I explained my confusion to the pharmacy tech; she tried to explain it away, but ended up with, "Now I'm getting confused myself. Let me get the pharmacist and she can explain it."

"You're getting more medicine now, so that's why it costs more."

"Why am I getting more medicine? He's still getting a thirty day supply."

"Yes, but you have to get it every ten days, so you are getting three bottles instead of two."

I looked at the bottles. Mixed together, the water and powder would make 100 ml. Adam's dose was 2.5 ml per day--25 ml in ten days. He would only be using a quarter of each bottle before it expired.

"Why can't you put 25 ml in each bottle instead of 100 ml?"

"Because that's the way it comes from the manufacturer. We can't divide up the powder."

"So, you're telling me that I have to pay extra for medicine that I can't use?"

The pharmacist shrugged. "It's the only way we can do it. Just throw out what you can't use."

If this was the first time I had encountered this disregard for thrift at the pharmacy, I might have gotten upset. But as it was, I simply slid my card and punched in my pin number. It's only eight more dollars a month. It's only a hundred more dollars a year. It's only one more example of how money is invisible to those in the medical profession.

Pulling out His PICC and Other Craziness

Here's an update of where we're at with Adam. Don't read this if you don't like to hear about detailed medical stuff.

We were released from the hospital Wednesday. On Thursday afternoon David had to rush Adam back in to the doctor's because his arm reacted to the dressing on his PICC line. On Sunday morning I went to get him out of bed and discovered he had halfway pulled out his PICC line. I took him to the ER. At first they were going to try to salvage the line, but they discovered that his arm had become infected, so they took it out, sedated him, and put a new PICC line in his other arm.

On Monday morning I took him back to the ER to get the dressing changed because his arm had oozed a fair bit of blood under the dressing. It had also reacted very noticeably to the chloroprep they used to clean it before inserting the new PICC line. While we were getting it re-dressed, Adam managed to yank out the new line halfway. Thankfully, they decided it was still far enough in that he could use it. Last night he was up for several hours crying because the reaction from the chloroprep is so uncomfortable/painful--which makes him grab at the bandage and attempt pulling off the PICC line again.

So, that's where we are. Seven more days of antibiotics! Pray that he can keep his PICC line in that long and that he won't have any more allergic reactions.

Home!

We were able to come home last night. Adam got his PICC line in, and amazingly, all the ducks got in a row for us to get released by dinner time. Thanks for all your prayers! We have three follow-up appointments scheduled and eleven days of IV antibiotics at home.

Update

Adam's bilirubin dropped some today, which is a good sign. He is scheduled to get a PICC line tomorrow afternoon so that we will be able to administer his antibiotics at home. There is a slight chance we could come home late tomorrow, but it will most likely be Thursday. Prayer requests right now are: (1) That he would be able to sleep well tonight. I am trying to get the nurses to cluster their care instead of waking him up every hour or two; (2) That he would get switched from a 6 hour antibiotic to an 8 hour antibiotic so that we don't have to do it so frequently; (3) That he would do well with not being able to eat any food all day tomorrow until his PICC line gets put in. Thanks so much for all your prayers!

October Visit to the Hospital

We are at Doernbecher Children's Hospital again with Adam. He was sick for a week and got a really low white blood cell count from some sort of viral infection. It looked like he was getting better till he had a relapse Saturday with high fevers and jaundiced skin. Looks like cholangitis (liver infection) took the opportunity to strike. We would appreciate your prayers that he would respond to treatment and be able to leave the hospital soon. Right now, we're expecting to have another two-week IV antibiotic regimen at home, so it would also be nice if he didn't have any complications with his PICC line this time.

A Ray of Sunshine

First time in what-feels-like-forever that Adam has woken up with a smile on his face. Praise the Lord for no early morning tantrums today!

Life with Three Littles

Lately, I've been hearing this question a lot: "So, what's it like having three kids now?" Is there really an easy way to answer that?

Here are some pictures to give you a little taste of what it's like. I apologize in advance for the poor quality of the photos--they're ones I took myself instead of getting them from my amazing-with-a-camera sister-in-law Amy.

Adam: "Look at the new toy Mom and Dad brought home from the hospital!"

How do you walk to church with three kids under one-and-a-half?

Climbing on the table is a "No"

Climbing on the piano keys is also a "No"...

...it's just a "No" I never thought I'd have to mention

Oliver plays dress up with the Barnard girls in Christy's sweater (AKA medieval chainmail?)

Oliver "helps" Mom make a batch of granola

Good stuff, huh?

Adam experiences the delight of fruit snacks

I love seeing this boy smile!

Marcus -- all wrapped up and nowhere to go

Oliver loves holding Marcus

We're just not so sure what Marcus thinks about it

The New Addition

Last week my husband David and I welcomed our third son into the world and named him Marcus Jasper Spears. When the twins were born, David wrote a very eloquent post about the reasons behind the names he chose for them. This time I had the privilege of choosing Marcus Jasper's name, and the reason behind it is simply this: I chose it because I liked it.

It did help that I spent all last summer devouring the Marcus Didius Falco novels, by Lindsey Davis. And the fact that Jasper Fforde is one of my favorite authors may have contributed in some minute way. But mostly, it was just a name that appealed to my aesthetic sense. Here are a few pictures of boy number three, all courtesy of Aunt Amy's exceptional photographic skills.

One day old - chubby and sleepy

An attempt at a family picture

Adam - Marcus - Oliver

Did I mention that he weighed 10 pounds at birth?

Welcome to the family, Marcus Jasper!

Thanksgiving

At the beginning of this week, I was intending to do a Thanksgiving Day post about my son Adam, giving thanks that he has had no complications since his surgeries for biliary atresia in January. But on  Monday night, as my husband and I sat bleary-eyed in the emergency room at Doernbecher Children's Hospital, we realized that he was having his first complication.

He had registered a low grade fever off and on for the past five days and been exceptionally fussy. Maybe he's teething, I thought. (Isn't that every mother's rationale for unexplainable baby behavior?) Then, on Monday afternoon, I changed his diaper and discovered that his stool was white--an indication that his bile ducts might no longer be working. His doctors suggested taking him to the lab to get some blood work done. And so, instead of running to the grocery store to get eggnog, and allspice, and Thanksgiving Day hors d'oeuvres, we zipped down to the doctor's office and had Adam's blood drawn. It would take a day or more to get the results. I was worried, but David reminded me that there was nothing to be worried about...yet.

When Adam's fever spiked to above 100 degrees that night, I called the advice nurse. After reviewing his file with the doctor on call at Doernbecher, they instructed me to bring him in to the emergency room. "It could be nothing, or it could be really bad. With his history, we don't want to take any chances." 

The blood work we had done earlier was upgraded to "stat." We arrived at Doernbecher and waited in the emergency room for several hours for the blood work to be completed. When the lab delivered the results, the liver numbers were way higher than normal, giving evidence of a possible liver infection. The next step was an ultrasound to see if there was some sort of blockage in Adam's bile ducts. The ultrasound was inconclusive. Meanwhile, Adam's fever began to go down. While the doctors conferred into the wee hours of the night about whether they should admit Adam or send him home, David tried to get our scared and screaming boy to go to sleep. Every time he closed his eyes, another doctor or nurse would come in to poke and prod him into resuming his screams.

I sat in the recliner, too exhausted, too uncomfortable, and too anxious to sleep. Were his bile ducts really blocked? Was the surgery that had seemed so successful no longer working?

The doctors decided to put Adam on antibiotics in case his liver was infected. He would spend the night at the hospital and undergo more imaging in the morning to locate the assumed blockage. I drove home at 3am, hoping that my seven-months-pregnant body could get a few hours of sleep. David stayed at the hospital to deal with more doctors and more disruptions to Adam's sleep.

The Psalmist says that "weeping may endure for a night, but joy cometh in the morning." And so it happened for us. By the time I got back to the hospital at 9am, Adam's fever had disappeared. The white bowel movement proved to be an anomaly. The head GI doctor told us that if there was some sort of sludge blocking his bile duct, it seemed to have gone away. Whatever had sent his liver numbers up in the lab tests was probably just a minor infection. They released us from the hospital at noon that day and we went home to sleep, sleep, sleep.

At the beginning of this week, I was intending to do a Thanksgiving Day post about my son Adam, giving thanks that he has had no complications since his surgeries for biliary atresia in January. At the end of this week, I can finally make my Thanksgiving Day post, and praise God that Adam's adventure at the hospital was short-lived and far less serious than it could have been.

Birthday Boys

True Confessions: This month I decided to challenge myself to meet the same writing word goal per day as all the NaNoWriMo's (to make a total of 50,000 words per month). I am currently at around 14,000 words--which puts me at about 8,000 words behind where I'm supposed to be. Sometimes real life just gets in the way of writing fiction...and I have to remind myself that that's OK. And sometimes, it's even better than OK--it's the way things should be.

The NaNoWriMo website suggests using your "free" weekends to rack up huge word counts of 5000 words a day. For me, the weekends are actually the hardest time to get any writing done. There's always some family activity or outing that's more important. We've spent the last two weekends partying for the twins' first birthday. Their actual birthday was on Saturday, November 5. A few friends and relatives dropped by with gifts and balloons--the balloons were quite a hit.

Adam

Oliver

That night we took the boys out for dinner at Bugatti's, the only semi-nice Oregon City restaurant that seems to be able to stay in business.

On Sunday, after church and after afternoon naps, we headed over to Aunt Amy's so she could take the twins' one year portraits. By the time we got there, there was only about half an hour of sunlight left (thanks to the time change). But the sunset and the twins all cooperated beautifully, and Amy got some lovely shots. I frequently thank my lucky stars that we have such a talented photographer in the family.

Adam on the left, Oliver on the right

Oliver

Adam

This weekend we had the "official" birthday party over at my parents' house. The boys were very eager to open their presents and quite pleased with the cake Aunt Abigail made them.

It's a new day now, and I should be writing. But what am I doing instead? Trying to find a place to store all the new toys, using OxiClean to get chocolate cake out of white shirts, and uploading pictures of all the festivities.

Did I mention that sometimes real life gets in the way of writing fiction? And I have to remind myself that that's OK....

My Two Favorite Crusader Knights

Yesterday was not only All Hallows Eve, but also Reformation Day which commemorates Martin Luther's dramatic publication of the 95 Theses on October 31, 1517. Our church held its annual Reformation Day celebration last night, and attendees decked themselves out in medieval and renaissance garb. It's been several years since I found the time to come up with a costume for myself, but it was the first year I had kids to dress up. Adam and Oliver went as Crusader Knights--I guess I must have the Crusades on the brain, or something....

Snacking on their swords....

Oliver

Adam

Holding onto his "treat bag"

Thanks to Amy for the pictures!