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.
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.