Saturday, October 27, 2012

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)

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.

Thursday, October 18, 2012

Shoshana's Leukemia Journey So Far


I created this blog so that our story with Shoshana and her Leukemia diagnosis could be told uninterrupted by other life events that will inevitably occur, and be discussed on my main blog (or my more techy blog), and also as a space to allow other authors, such as my wife Elizabeth, to write posts from time to time.

Here are the previous blog entries that I have posted on my other blog:
There is also a post I wrote to introduce this blog: Shoshana: New Blog
As you can see, I've been posting a comprehensive summary every two weeks or so, as best I can.  I intend to continue to do that, as well as fill in the gaps with shorter content.  I may occasionally link from here to posts on other blogs, or content on other social networks, but I will try to maintain this as a cohesive whole.