Saturday, September 22, 2012

Shoshana: Respiratory Failure

A lot has happened since I last posted.  Shoshana has been in the hospital for the last two weeks.  Elizabeth has once again stayed with her almost 24/7.  I have been coming up in the evenings, often bringing Abigail so she can see her mommy for a couple of hours before going home with her grandma.  Elizabeth's mom has been taking care of Abigail most of the time, or leaving her with friends and coming to the hospital to help and relieve Elizabeth.

Shoshana has been in and out of the ICU a few times.  The cause of the pain in her throat, which we initially thought was her NG tube, and then thrush, has apparently been a very uncommon side-effect of vincristine, one of the chemo drugs.  Vincristine toxicity has caused her vocal cords to stop functioning properly, as well as be a constant source of pain.  We have had to increase her pain medication dose several times, and added new drugs to help the pain medication to be more effective.

Her vocal cords aren't doing a very good job when she swallows, which means that any liquids she has need to be thickened.

The worst part is that her vocal cords aren't getting out of the way for her to breathe.  They just sit there, closed; in the way.  The night after she was admitted to the hospital, she had to be intubated, which means putting a tube down her throat for her to breathe through.  Her diaphragm was not able to get enough air into her lungs to breathe, so her chest muscles had been helping out (in medical terms, this is known as stridor).  After this had developed over two weeks at home, her body was tired, and she would stop breathing in her sleep.

Shoshana intubated
She was intubated for about 48 hours, after which she was put on CPAP, which is a mask worn over her nose that applies a constant pressure.  The pressure pushes out on her throat, widening the passage between the vocal cords.

This has worked, more or less, ever since, though now she is on a BiPAP, which allows increased pressure while she is inhaling.  She can be off of the BiPAP for an hour or so at mealtimes.  She isn't able to eat much at once, because her swallow muscles wear out.  She has been getting formula (and breastmilk from mommy, and vegetable juices from grandma) through her NG tube.  She has still lost a lot of weight.  The most activity she has been up for is sitting up in bed for a few minutes at a time.  I miss our bike rides.

Meanwhile, she had been getting steroids.  The original idea behind the steroids was that the laryngal dysfunction might be caused or exacerbated by swelling, and therefore anything that would reduce the swelling would help.

No swelling had ever been observed.  In fact, when we first brought her in to the emergency room, they stuck a scope down her throat, and didn't see any swelling.  Elizabeth had been skeptical of the large doses of the steroid ever since she had been intubated:  prednisone wasn't helping (and that reduces swelling), so why would dexamethasone?  Additionally, the dexamethasone was preventing Shoshana from getting a good night's sleep, which was the very thing her exhausted body needed desperately to recover.  Additionally, with such high doses, coming off the drug would cause swelling, since her body would have compensated for its presence.

After discussing this with the doctors, Elizabeth was surprised to see that Shoshana was still getting the high doses of dexamethasone!  She went mamma bear on them.  I'll let her tell that story.  After about a two day standoff, everyone was pretty much back on the same page, and she is being weaned off of the steroids.

I find I've been taking and posting a lot fewer pictures of Shoshana.  I like to capture the happy and hopeful moments; the smiles and giggles.  We didn't get any for a while.  As she has become a bit more stable over the last few days--relatively so, she's still in the ICU--she has been able to play with Abigail when she visits (although Abigail is prone to pulling on lines and anything else she can get a hand on, so we need to keep her out of reach).  She definitely misses Abigail when she hasn't seen her in a while, and asks for her.  She has been able to talk to people about things other than her pain and needs, and play with toys and sticker books in the last few days, which is an improvement over the previous couple of weeks or so.  There haven't been any bike rides, but I'll take what I can get.

My brother Josh's 3rd and 4th grade class wrote letters to Shoshana, and I was able to show them to her.  I also received a video from a friend's three-year-old daughter describing a letter and drawing she was making for Shoshana.  Shoshana really appreciated these things, and she seemed to especially enjoy them because they were from kids.   They brought me to tears, especially the statements of trust in God expressed in the letters from the kids in Josh's class:  the same kind of faith God expects from wise-to-the-world grownups.

Please keep asking the Lord to heal her vocal cords, restoring their function from nerve damage and relieving her of constant pain.  (Luke 18:7)

We definitely enjoy visitors.  Both to see Shoshana, and visitors for Mommy and Daddy to have a taste of normal social interaction and distraction.

We have depended on the meal plan set up by our church, to supply us with two or three dinners a week.  I have been going from work to the hospital, and then home to sleep, and Elizabeth is living in Shoshana's hospital room.  The burden taken off of us by these provided meals has allowed us to focus on Shoshana's needs and care.

Please ask the Lord to supply us and the doctors with wisdom, especially Elizabeth, who is in the front-line position of coordinating all of Shoshana's care over the long haul.  She and I need wisdom especially to know when to defer to the doctors' expertise, and when to put our foot down.  Shoshana is very blessed to have such a capable and knowledgeable nurse at her side and on her side so faithfully.

Monday, September 10, 2012

Still Waters

I just spent about half an hour eating my dinner in the ICU Family Lounge with a pair of men from Djibouti, who poured me a glass of juice and practically dumped encouragement in Christ into my soul.  One of the men I had seen before with his family in the ICU.  His six-year-old son has had a tumor on his head for two years.

It was refreshing to see and hear the peace and joy that we share in Christ gush out in broken English, and it was encouraging to me in ways that I know my soul needed.  Rough times may be ahead for our family, but I know that we belong to the Lord.  We have a heavenly Daddy who cares for us, a Savior and Redeemer who has suffered through worse than this, and knows the full extent of temptation, having endured it all without giving in, and a Spirit who lives in us, and is one with the Father and the Son.  He knows our circumstances and pain, and He will speak His word into our hearts, full of precious promises.

How good is the God we adore!
Our faithful, unchangeable Friend,
Whose love is as great as His power,
And knows neither measure nor end.

'Tis Jesus, the first and the last,
Whose Spirit shall guide us safe home.
We'll praise Him for all that is past,
And trust Him for all that's to come.

Saturday, September 01, 2012

Shoshana: Induction Chemotherapy

The first month of Shoshana's chemotherapy treatment is called "induction".  The goal is to 'induce' remission, such that the cancer cells are not detectible in her body.  This is not to say that the cancer will be totally gone.  A single cancer cell left in her body can and will cause a relapse.  Once remission is achieved, she will still have 2 more years of lower-level "maintenance" chemotherapy, to make sure that any remaining leukemia cells don't stage a comeback.
Playing in the waiting area at a clinic visit

There have been good days at home and bad days.  A good day is when Shoshana is comfortable enough to laugh, smile, be silly, and play with her sister; to be herself.  A bad day is when she doesn't want to move or be touched:  she simply wants to lay on the couch and watch movies.  We had been having fewer of the good days lately.

Bubbles: a good day

A friend gave Shoshana a pixie cut, to lessen the impact of chemo-related hair loss.

Last night, Elizabeth sent the following to our church prayer chain:
Tuesday marked the start of week 3 of treatment. According to the doctor the 3rd and 4th weeks are the most difficult both for the child and for the family due to pain, hair loss, crankiness (due to the steroids), and exhaustion. The most prominent issue right now is pain. She is experiencing a combination of sore throat from the constant crying combined with thrush, jaw pain from one of the chemo drugs, bone pain from the leukemia itself, and generalized muscle achiness from the combination of steroids and chemo. At this point Shoshana is taking the maximum allowable pain medicine dosage at home and if her pain continues to increase then we will have to hospitalize her for pain management. In my first few years as a nurse working on a post-op unit I learned a lot about pain: uncontrolled pain or frequent flare-ups cause a cascade of stress hormones to release inhibiting healing, and even feeding cancer. So even though I don't like how droopy her eyes are, I do not support giving her the max home dosage and allowing her to cry for two out of the four hours in between doses. Last night, for the first time since her hospitalization, she woke in the middle of the night and asked for her pain medicine.

All that to say, please pray for her pain to be controlled, for us to have patience and continued energy to serve Shoshana's needs (not necessarily her demands ;)).
A smile.
Reading with Grandma

This morning we decided it was too much.  Shoshana once again woke up crying in the middle of the night, and even after her morning dose should have been in full effect, she was obviously uncomfortable and in pain.  We called ahead, and headed up to Seattle Children's Hospital.  Since it's a weekend, we had to go to the emergency room.  If we could not effectively manage her pain at home, she would need to be admitted to the hospital.

We were there all day (there was a lot of waiting), and the conclusion was this:
  • Despite Shoshana still constantly indicating that her throat is her most acute source of pain, it does not look infected.  The thrush seems to have cleared up.  They took some swabs, and will run some cultures to see if there is anything else.  It may simply be irritated by her feeding tube, and aggravated by her crying.
  • She was still in pain, and the current dose was not cutting it.  We are going to try introducing another medication specifically for nerve pain, but that will take a few days to build up and kick in.  In the meantime, we will once again up her scheduled dose of oxycodone (pain meds).
It's a path forward.  Again, we appreciate prayers to the effect that Shoshana's pain will be effectively managed.
Back at the hospital

"Daddy, I want soup with noodles!"
Please also pray for Elizabeth.  This whole process has been rough on her.
  • Spiritually:  She has always had a hard time understanding why God allows this kind of thing to happen.  This incident has dredged up the old patterns of thinking and feeling.  She finds it difficult to weigh in the providential mercies that God has given to us in the midst of this crisis.  She knows they're there, but they somehow don't seem to register.
  • Emotionally and physically:  I have returned to work, except for scheduled clinic days.  Elizabeth is the one primarily taking care of Shoshana and Abigail most of the day, every day.  She has always had a hard time being strictly a stay-at-home mom.  The demands of the task have increased, and her opportunities for social, emotional, and physical outlets have decreased.  She is a strong person, but she has a tendency to power through tough times, which does not work well for the long haul.
We are thankful to be blessed by:
  • Kristen, Elizabeth's mom, who has spent almost every day taking of Abigail while we're at the clinic, or helping out in general with the girls and around the house.
  • A woman from our church, who is spending some time showing Elizabeth some healthy (and delicious!) cooking ideas.  
  • Encouragements and concern, expressed in person, on Facebook, and in the mail.
    Pumpkined out after big, long day