Pain Management and Elevator Music

Shoshana recently started a stage of chemo called Delayed Intensification. In some ways, this stage is considered to be the most difficult, the most intense. Not only does she have four chemo drugs that she has seen before, including frequent vincristine, she gets a new one called cytarabine which causes a lot of nausea. After the first day (Friday) in which she got three chemos, including vincristine, her pain once again got out of control. We brought her back to the hospital on Monday morning because we couldn't give her any more pain medicine despite her obvious discomfort. And the pain medicine we have been using for a while wasn't working as well as it used to.

I told the team that the plan had to change or she wasn't getting any more vincristine. Unfortunately, that would mean a much higher chance of relapse, but she would not be the first case that simply could not tolerate the side effects of vincristine. After many conferences with the chemo team and the pain team we decided there was another option: we increased her gabapentin sharply for three days around the second weekly dose of vincristine (and other drugs, but the big problem is vincristine).

And, as we all know, she doesn't tolerate medications like most people...

We realized she was "off" when she didn't sleep most of Saturday night. Thinking back she had begun shivering the night before complaining of being cold. The on-call fellow said to bring her in to the ER for possible gabapentin toxicity. Once she got there, however, they decided it might be sepsis instead. Her temperatures had been normal, labs were normal, blood cultures wouldn't come back for a few more days. Since there was very little to do at that point other than go back to the lower dosage of gabapentin they sent her home. She was pretty hyper all that day and didn't sleep from 10am to 10pm until I gave her a small dose of melatonin (per Dr.'s orders). She has been doing relatively well since then; the insomnia has resolved and the hyperactivity has made way for a more "normal," silly, super-active Shoshana. Which generally means she is feeling good.

Oh, and that ER visit was the first time I was at work while anything new was going on with Shoshana. I was on my phone a lot. But I somehow still managed to see a lot of patients.

Other than the gabapentin toxicity this last weekend went rather well. Her pain was generally a secondary issue to whatever else was going on. We are hopeful that with a tweak of the gabapentin dosage she will have decent pain control this weekend without going all hyper and insomnolent for a few days. By the way, the typical reaction to too much gabapentin is sleepiness. The same goes for Benadryl but she reacts to that with hyperactivity too.

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Operation: Harass the Insurance Company

On a related note, we have been working with a second home health agency to take our case since the first is a rather small company which is having difficulty filling our needs. I found out on Thursday that the second agency's petition to be an exception to the "in network" rule was denied.

Now... why is the claim denied? Because someone didn't do their job.

I was on the phone with Blue Cross Blue Shield of Illinois off and on Thursday and Friday trying to get things figured out. Bouncing around departments, many minutes on hold, lots of phone tag and I thought I understood the problem. They somehow got the idea that there were 40 other home health agencies to choose from in my network. I heard that and nearly choked. I doubt there is a 25 mile radius in the United States, let alone the world, that has that many home health agencies, let alone that will take pediatrics, let alone Shoshana's complicated case. Not only that, the request was filed several weeks ago, at least one week before our main day shift nurse put in her three weeks notice. By this time she was doing her last shift and most of the next week was not covered due to her absence. How did it take that long to be denied in the first place?

I tried in vain to motivate the insurance people to make this a top priority because when I don't have a nurse I have to use an ambulance for transport and Shoshana will be admitted quicker and discharged slower without a home health nurse.  This is expensive, people! How is getting a nurse on the case not a priority!

They do nothing.

Monday rolls around and I'm on the phone from 9am to 4pm either on hold, talking to someone, bouncing around departments or waiting no more than an hour for a call back. Oh, and in the middle of this saga our case manager nurse decides to stop answering my calls or responding to my voicemails. Thanks for nothing Marie.

By the time the business day is coming to a close Marie's supervisor FINALLY understands what I'm asking of her (she got hung up on a separate issue) and says I need to talk to a totally different department but now it's too late. And I snapped. What I'm trying is not working and now you're putting my daughter at risk! I had gotten the impression earlier that day that they were not interested in doing their job so I had to do their job to find out the truth about why the "out of network" claim was denied. I asked her to write this down and make sure it is forwarded to the complaints department. I also gave myself permission to use some colorful language if I thought it would help to get my point across.

Did you know that there are 44 other home health agencies in my area? I didn't. Neither did my agencies. Because they don't exist. Because someone at your company just punched numbers into their search engine, saw there were 44 hits, and denied the claim. Never mind the fact that some of the hits aren't even home health agencies. Never mind that there were many entries for the same company (four for Gentiva, seven for Multicare, for example). Never mind that THEY DON'T TAKE PEDIATRIC PATIENTS! Out of 44 hits I made 22 phone calls. Some of them only did visiting nurse services such as infusions or wound care, one of them no longer exists, several of the phone numbers on the search engine were wrong so I had to find the numbers myself, and almost all of them don't take peds. Not only that, none of them could suggest an agency that does take peds! My search brought up two relevant hits. One agency is in Bremerton. As in, across the Puget Sound. You need a ferry. To make a two hour commute. I know this because I almost went there a few times for work. The second one is in West Seattle. But do we really have to start the process from scratch when we've already made so much progress with Alliance? They have a nurse waiting to take our case! In the meantime you are putting my daughter at risk for serious complications and you are putting your own pocketbooks at risk! How are you not motivated to fix this? Why am I doing your job?

I unload my chest and took a breath.

I thank her for taking that down then tell her that I expect a call from that relevant department first thing in the morning. That means 6:30am my time. I don't care. This has to be fixed!

They don't call.

Once the heckticness of the morning dies down I call the supervisor again. Miracle of miracles, the out of network request has been reopened and bundled with the review of "medical necessity" already scheduled with the medical director. So if the medical director decides that Shoshana does still need regular home nursing then they will automatically approve Alliance to do some of that work. Hallelujah! It's totally going to be approved, by the way. I'm sure we're going to have several of these medical necessity reviews simply because Shoshana's is a complicated, expensive case. Just for reference: by the time Shoshana came home in December from her three month inpatient saga her care cost just under $1 million.

Let's summarize: Blue Cross Blue Shield of Illinois worked on a case for four weeks, came to a half-assed assessment of the situation, and didn't follow up with anyone. I called constantly for three days before finally getting to the right people, asking exactly the right questions, listening to them repeat themselves over and over again, redirecting their thought processes, and pushing our issue through to the medical director. Oh, and listening to their poor excuse for on-hold music.

BCBS: 0
Me: 298578384846390240

After all of this I feel like I've been in a three day wrestling match and I have the worst elevator music stuck in my head. It was lame, cliche, pathetic, without pride. It looped every three minutes with three unrelated fragments. This could be used as a torture device. It nearly made me hang up from the sheer pain of it.

Enough of that. Let's listen to little girls laughing. Abi had been carrying around Shoshana's "stomp shoes" most of the day and was getting very angry when it wouldn't stay on her foot. So mom put them on and the girls are super cute!... and then Shoshana throws up. This stuff happens really fast. But let's just laugh at the girls for now.

The Grind

Since our last blog post Shoshana was home for seven days before once again having nausea, vomiting, diarrhea, and overall dehydration.

The first day was, again, gut rest then instead of going straight to formula they proposed starting with pedialyte instead. A quick google search confirmed my suspicions that the formulation of pedialyte had ingredients that made me uncomfortable. Namely, the dyes and "natural and artificial flavors," ingredients and labeling ambiguity that are both banned in the UK. It took a bit of back and forth discussion (read: standing my ground) to get the staff to agree to a formulation that included some sort of food such as juice, water, salt, and minerals. Why does that have to be so difficult? All over the world rehydration does a good job in the majority of cases without pedialyte. Where I was in Mexico the prescription for gut issues always included limonada since limes were abundantly available. I managed to convince the team to allow a juice formulation once I said that if that doesn't work I'm more than willing to try dye-free pedialyte. But before we knee-jerk to the industrial formulation which only includes the base chemicals, vitamins, and minerals and "natural and artificial flavors" can we try some food? I understand there are cases in which the body needs a temporary rest from processing foods but still needs base nutrition but I was not convinced this was the time for Shoshana.

The gut rest and slow rehydration had an unexpected side effect: Shoshana ate! Like, constantly! Not big amounts but she was almost always putting something in her mouth. This did not happen last time. She even ate a few things that she hadn't touched since before her diagnosis such as oranges, PB&J, and granola.

As we continued to brainstorm what could be causing Shoshana's latest gut issues Dr. Labriola, our pediatric oncology naturopath, suggested a few things and the hospital nutritionist concurred: we changed the hemp milk to rice milk and we purposed to feed her with rest breaks and a few spoonfuls of yogurt at the beginning of each tube feeding to support the digestive flora. This seemed to help since she continued to want to eat even as we worked our way up to the goal calories per day. Within a few days she improved greatly and we made it home on Friday afternoon. Other than an extra dose of pain meds and going to bed early she seemed normal.

Tim and I got to sleep in the same bed at the same time for the first time in a week... for one hour. The night nurse knocked and informed us that Shoshana was very uncomfortable all evening and has been mounting a fever over the last 30 minutes and the latest reading was 38.5C/101.3F. In all the time Shoshana has been neutropenic this is only the first or maybe second time since she has gone over 101F. She runs low 97's like I do and a change of two degrees is enough to make anyone feel crummy. I asked Tim to take her to the ER because I was so wiped out and sleep deprived and the weekend is usually his shift anyway.

By the way, that sets a new record! Discharged at 2pm, re-admitted 12 hours later. That is not the shortest time between trips to the hospital but it is the shortest time between admits. At least she got to have a bath with little sister which they both thoroughly enjoyed.

Now she tests positive for rotavirus which is known for viral respiratory sorts of infections. She is on two broad-spectrum antibiotics which put her at high risk for another round of C-diff. Once the microbiology report comes back tomorrow they will be able to change those to more specific drugs. She had a lot of pain overnight and more secretions which make the doctors think of a general tracheitis but at this point it doesn't make much difference whether it is a mid-airway infection or lower airway infection. Over the day she has improved, complaining of less pain, less secretions, and generally feeling "better" though sometimes she would say "bad".

It is possible she could be discharged late tomorrow afternoon but it depends on the microbiology report. It usually takes 48 hours but sometimes more, sometimes less. It depends on her general symptoms too.

We have an appointment with the clinic on Tuesday to evaluate her readiness for the next stage of chemo called Delayed Intensification with a planned start on Friday. That means adding a nasty drug called doxyrubicin, restarting steroids (yay...), methotrexate, PEG-asperaginase, and vincristine WEEKLY for FOUR WEEKS. Am I anxious about this? Guess. Please be praying for her handling of those drugs. She has gotten at least one dose of each of those in the past but in some ways this stage is even harder to handle than the first stage of treatment. A lot of hydration fluids are required on multiple days to protect the kidneys, lots of labs to monitor, white blood cells hovering around zero, and possible red blood cell or platelet transfusions. Not to mention the pain and nerve damage from the vincristine. This will be the second time she is scheduled for so much vincristine in so little time and we know how that ended. Obviously, she has a trach tube in place so, theoretically, her airway is "stable" but there has literally never been a case like Shoshana related to vincristine.

In my research I've learned that there are only six other known cases of survived vincristine toxicity, one of which was a girl. Only one of them (a boy) needed a trach for a short time after extubation. None of them had the pain and nerve side effects Shoshana is experiencing. One of the reassuring things about leukemia treatment is that because it is so common and has been around for so long we have a lot of data to help us decide how to treat her. Unfortunately, all that data only goes so far.

Please pray for us. For sleep. For peace. For pain relief. For protection from drug side effects.

Thank you.

Playing with medical supplies

Eating more!

Making faces :)