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.

C-Diff, Methotrexate, and Pneumonia

The title pretty much sums up the last two weeks here. Two weeks ago Shoshana started vomiting not very often, but a large amount each time. After a day and a half of this I knew she was getting dehydrated so we brought her in to the clinic for fluid bolus and evaluation. After the first fluid bolus, still no urine. So they ordered a second bolus. Well after the second fluid bolus she finally wet her diaper but not with much. The doc hemmed and hawed about whether to keep her or send her home and Shoshana finally did it: she performed in clinic! She threw up 650ml which was everything fed into her stomach since the last vomit. The nurse and I pointed out that that is how much she was regularly throwing up because, apparently, when we say "a lot" it doesn't translate into anything important until you measure it and get something ginormous like "around 600mls." The doc heard how much emesis was measured, lifted his eyebrows, and decided to keep her. Even though I was on the fence at that point I was relieved that we wouldn't be going home with an ongoing hydration problem without any answers as to why.

The next few days were a rotating trial of gut rest, slow gut trial, throwing everything back up, rinse, repeat. Finally, some watery diarrhea prompted a stool test and Clostridium difficile was diagnosed. It is likely the natural gut bug was allowed to grow out of control because of an earlier round of antibiotics combined with her low immune system. Once out of control it is also highly contagious and easily tips the internal balance for other patients in the healthcare setting. It was around seven days after her first symptoms that she finally started to have a little net gain through her stomach. As soon as that happened we agreed to start her fourth round of high dose Methotrexate etc. which is the last one for this phase of treatment. Her gut continued to progress and she stopped dropping weight.

Then the respiratory secretions got bad. Her pain exploded, vital signs started changing, she was cranky, her lungs didn't sound right (though they have sounded poorly in the past for various reasons) but every test we did was basically negative. Some minor signs of infection were seen under microscope from her trach secretions but not nearly enough to explain her symptoms. There was only one thing left to try before requesting transfer to the ICU. She got scoped by ENT and, lo and behold, he saw pus in her right bronchus! Hallelujah, we have a diagnosis! Apparently there is an urban legend among doctors that it is possible to diagnose pneumonia before it is visible on a chest X-ray. Well, there you go medical researchers! It is possible. And I expect to be notified in the near future of yet another case study.

But this all goes to confirm her previous patterns of having severe symptoms before something can even be diagnosed. She sure keeps us on our toes! Sometimes I sigh and wonder why she has to be so special. Can't she just be "standard" for something? That would make everyone's job easier and would probably mean a faster and easier recovery from this damn cancer.

Oh, and we're not even done. The day before Shoshana came home Abi was a little extra cranky and I had a sore throat. The next day we both spiked fevers and wanted to do nothing but lay down and sleep. And the pain. OH THE PAIIIIN. I hate the flu I hate the flu I hate the flu. This is the fourth time I have ever had the flu. The first time was at the age of 22, two months after getting my first ever flu shot because it was a job requirement. Since then I've been forced to get a second flu shot (again a job requirement), again got the flu a month later, but this year I've had it twice without a preceding flu shot. I've worked in healthcare that whole time and traveled three continents before age 22. I don't think it's a coincidence. But that is a blog for a different time.

Shoshana has been home for two days and doing well. Abi is so giggly now that her sister is around and so interested in everything Shoshana does that she is rather annoying. I hope they can both learn some social norms through this. Abi, Shoshana needs space. Shoshana, Abi is so happy to see you!

We haven't taken many pictures recently so here are only two:

 Still pretty wiped out but enjoying her new shipment of hats.

Beginning to feel better. Yes, she has lost weight. 2.5 kilos.

Please also keep our friends Rachel, Merle and their two boys Benton and Wilson in your prayers. Last I heard they were still stuck at Children's trying to manage Benton's pain without overdosing him. Mostly they just want to go home and be in a familiar environment during the coming transition. My heart breaks for them.

Pain and other things

We had a follow up appointment and lab draw today to see if Shoshana's white blood cell counts were high enough to hit her with more chemo or not. Finally! We can begin her third round of inpatient heavy duty Methotrexate infusion. Since she has been taking longer and longer to "recover" from those treatments they are going to decrease her dose to 80% based on how sensitive she is to all the other chemos as well. It makes sense that she would be sensitive to more than one. 

Speaking of sensitivity, she is currently on a 30% dose of Vincristine in an attempt to reduce the neuropathic pain side effect but we're not seeing a significant improvement since dropping the dose from 50%. We saw the pain team yesterday and the decision was to increase the Gabapentin beyond the recommended maximum dose since she isn't showing signs of side effects of that drug yet. After this next dose of Vincristine we will have a more in depth conversation on whether to stop the drug altogether (which would greatly increase her chances of relapse) or figure that she is one of those rare people who have severe side effects with any Vincristine whatsoever and give her a higher dose while focusing harder on managing her pain.

The pain side effect has become such an issue that we once again brought Shoshana to the ER last weekend simply because her pain was out of control and there was nothing more we could give her at home. That was while on two narcotics known as Methadone and Dilaudid as well as Gabapentin which is technically an antieleptic but is the mainstay drug for neuropathy. Besides the glottic stenosis, glottic edema, and tracheostomy, the pain itself is considered a severe side effect. Sometimes she wakes in the middle of the night with severe pain, sometimes, like this morning, she is simply grumpy for a while before admitting she has pain. The goal is that she wouldn't need Dilauded more than 4 times a week. At this point we're at 7-8. Unfortunately, since she is already on a pretty intense pain management regimen any increases to her pain medication will need to be really slow unless she is inpatient where they can monitor her very closely.

Please also pray for a former roommate and his family. They just finished a set of full body scans this week ater their last ditch effort to stop the spread of his rare neuroblastoma. Unfortunately, the scans show cancer all over his body. The mom says they are going home for the weekend and having fun before making any more decisions about his care. They are believers with two sons and they live in Yakima. I cried and gave her a hug through she didn't cry with me. She says that she is still numb from the news last night and hasn't cried about it yet. My heart is breaking for them. She is such a sweetheart and we have a lot in common. Our kids were going through a lot of the same struggles when we met and I was encouraged by her several times. Please pray with me for them.

On a lighter note, here are some pictures of what Shoshana has been busy with recently:

Lunch with a different former roommate (second from the right). She met their new puppy afterward.

Playing with Abi and daddy. I love Abi's expression in this picture. They sure have the best daddy in the world!

At the entrance to the Seattle Children's Museum. She had a great time.

Normal-ish-ness

Oh, wow, it's been a month since I updated here last!

It's been so nice to have Shoshana at home.  We have had several all-day clinic appointments, a short (scheduled!) hospital stay, and a few trips to the emergency room, but compared to the last few months, it was downright normal and relaxing.  We even made it to church together a few times.

We have home nursing care at night, and during the day most days (except Sundays and every other Saturday).  This enables Elizabeth and I to sleep at night (in the same bed!).  It's been great to have the girls together.  They love to be with each other, and Abigail especially misses Shoshana being in her room at night when she's gone.  Abigail is walking now.

Shoshana's neuropathy pain is still an issue, even on the lower doses of vincristine.  Over the past two weeks or so, it has been getting worse.  Last night, after a clinic appointment in the morning, and a lumbar puncture in the afternoon (with a trip to the Children's Museum in between--her first trip to anywhere but the hospital or church since diagnosis!), she woke up from her evening nap in extreme pain, and spiked a fever.  Liz and I brought her in to the emergency room.  They are increasing her pain meds (again), and she seems to be doing okay this afternoon.

She is due to be admitted to the hospital for another round of IV chemo anyway, and would have been earlier this week, but her blood counts were not high enough to start the chemo.  Her blood counts are high enough today, but with all that's going on, they want to see her sustain that for another day before staring the round.  If not, we will have to go home, come in to the clinic on Monday, and then be admitted on Tuesday.  Bouncing back and forth between home and the hospital is no fun for anyone.

Specific items for prayer:

• That Shoshana's neuropathy pain will resolve quickly.  
• That the hospital stay and IV chemo will go smoothly.
• That Shoshana will remain in remission from cancer.  Forever.
• Please continue to pray for our family: nuclear, extended, and our much bigger family of supportive friends.  I praise the Lord for all He provides!

 I know you all just visit this blog for the pictures, so here you go:

Holding Pattern

In the past two weeks or so since I last posted an update, a lot has gone on, but not a whole lot has changed.  We seem to be in a sort of limbo.  Shoshana's airway is stable enough that she was moved out of the ICU onto the regular floor, but still too unstable to consider going home.

Shoshana and Daddy

Her pain situation seems relatively well managed and stable, but this round of chemo, she has been throwing up a lot and not interested in eating or drinking enough fluids to keep herself nurtured and hydrated.

Before she moved out of the ICU, they were going to give her a tracheostomy because her vocal cords were still not moving.  In preparation, they did a bronchial scope, and saw her vocal cords moving well enough that they called it off.

Taking the blood pressure of the medical play bear.

Later under anesthesia, they did a scope further down, and observed swelling just below the vocal cords.  Swelling that has no explanation, and is constricting her airway such that her need for the BiPAP while asleep has not diminished.

The new plan is the old plan:  tracheostomy, scheduled for Monday at 4:00 PM.  They will of course do a scope immediately before the operation, and if the swelling has gone down significantly, they may call it off again.  

Playing with her doctor and nurse toys.

Standing up.  Shoshana is still very weak, and has peripheral nerve damage in her feet and legs.

Here is what is currently keeping Shoshana inpatient at the hospital:

• Obstructed airway - She needs a BiPAP while asleep to prevent stridor.  She has been fine breathing on her own during the day with the exception of her nap time.
• Pain management - currently by IV drugs, which we could not administer at home, so she would need to be switched to oral medication.
• Compromised immune system due to low blood counts - this is due to where she is in her cycle of chemotherapy, and is expected to improve soon.  She is getting medication to increase her healthy white blood cell count in anticipation of the tracheostomy procedure.
• Feed and fluids - Currently, Shoshana has very little appetite, is prone to nausea, and has trouble swallowing foods that are too solid or too liquid.  She is still on thickened liquids as well.  She is receiving formula through her feeding tube for nutrition and hydration, supplemented by IV fluids.

Music room!

Doing crafts.

A tracheostomy comes with its own set of complications, but it is expected to immediately give her relief from her airway obstruction, and prevent future nerve damage and swelling issues from causing problems getting oxygen to her brain (and everywhere else, for that matter).

She will need to be in the ICU for at least a week after the procedure, and it will be weeks before going home will even be a possibility.  

Taking a nap, on the BiPAP

Climbing on the chairs, and discovering the mural.

At the hospital, Shoshana has settled into a sort of daily routine.  Breakfast in the morning, followed by bike riding and playing in the music room, and then arts and crafts-type activities until lunch.  After lunch, play some more, and then nap for two to three hours on average.  Dinner, another bike ride or so, and then down to bed.  This is of course punctuated by visits from family and friends, as well as all of the interruptions that hospital life is made of.  We have been reserving DVDs for when she needs distraction from pain or discomfort (or the occasional sanity break or snuggle time).

Diving on the chairs.

Playing with Uncle Loren's phone

Now that we're out of the ICU and back on the cancer floor, we have had a series of roommates (though as I type this, we are alone).  Shoshana has thoroughly enjoying the interaction, though at times, we have had to temper her enthusiasm to let, for example, her 8-year-old roommate have some big-girl time with her friends, or keep her from bossing around other patients' family and friends.  Shoshana is the epitome of precocious, and we are doing our best to teach her how, and encourage her to be polite and respectful to others.

Abigail and Daddy at home

Abigail and Daddy at home

Please pray:

• Shoshana has had some unusual reactions to several drugs, and some unexplained symptoms.  Please pray that this pattern would not continue, and that the drugs she is on would have the desired effects without difficult complications.  Shoshana's current nausea is unusually late for her phase of chemo.  Please pray that it will be effectively eliminated, in view of the impending tracheostomy.
• Our family is under a lot of stress right now, not only because one of our members is suffering, but also because her hospitalization requires us to be apart most of the time.  Please pray that she would be able to come home soon, and that the Lord's grace would be supplied liberally where there is strain.  We thank the Lord for his provision of family and friends who are sacrificing in order to enable Elizabeth and me to spend more time together, and enabling Elizabeth to occasionally go to work (which helps her to stay sane).
• I have run out of paid time away from work.  Any days and hours I miss at work now cut into my paycheck.  Please pray that our family, especially me, Elizabeth, and Kristen, will remain healthy and able to take care of our income, and our two girls.  Please pray that I would be able to get ahead in hours, rather than scrambling (or simply not able) to make them up, when I am needed elsewhere.
• For Shoshana's treatment, that it would be effective.  Elizabeth and I are looking into complementary ways to help Shoshana's body be as strong and healthy as possible as she fights cancer.  The battle belongs to the Lord, however. 

"Unless the Lord builds the house,
They labor in vain who build it;
Unless the Lord guards the city,
The watchman keeps awake in vain."
 - Psalm 127:1 (NASB)

Sisters!

Sisters

Showing off her sparkly, flashing shoes, and her Rapunzel dress and crown

Shoshana loves to make these.  Daddy helped with the lettering on this one, at her direction.