Nine outfit changes between 10am and 1am. This not because she is Cher or some fashion deva. No, yesterday was an explosive day. Three bouts of throwing up and five blow out diapers. In the first four hours of her day, I had changed her clothes four times. I don’t even know how many times we changed the bed. The last of these was what did me in. Allistaire’s appetite has decreased quite a bit and I spent some time discussing her nutrition and caloric needs with the dietician. In the last several days, Allistaire has turned into a squirrel, storing food in her cheeks rather than chewing and swallowing it down. On Sunday she had a bite of scrambled eggs in her cheek for two hours. Our old standby for packing on the calories, cheese, is simply being stored in bulging cheeks. I was trying to problem solve and decided to just offer her baby food that requires no chewing. For two hours Monday morning, I worked painstakingly with Allistaire to get nearly three small jars of baby food in which only amounted to about 200 of the 1050 calories she needs each day. Because of rising at nearly 10 am each morning, her 3-4 hour nap in the afternoon, and the fact that each eating session is 1-2 hours, she really only eats breakfast and dinner.
So at last Allistaire was done with breakfast, she was in her fourth outfit for the day and drinking a bit of milk. I tried to get her to drink more. I pushed her too hard to drink more and in a moment all the work of the morning was being thrown up. The throw up was all over Allistaire and the look of terror flashed in her eyes. She cried and shook and I began the process of cleaning up once again. I was so frustrated and discouraged. With the doctor’s recent threat during rounds of a feeding tube if her eating didn’t improve, repeating in my mind, I began to cry. It had been a rough morning, reminding me of the sensation I had one time when I was trying to learn to swim out through the waves in the ocean in Newport, California. My friend Matt told me to just dive through the wave as it came at me. I gave it a shot and before I knew it I was taken down by the wave. I had barely regained my footing before another wave took me down. Wave after wave I was slammed down. I couldn’t catch my breath. Monday morning was a similar rapid fire. As I attempted to gather my composure before the nurse returned to the room, Allistaire looked up at me quietly and intently. I don’t know what letters to use to produce the sound that Allistaire repeated. But in her sweet compassionate voice, with her head cocked to the side, she looked up at me with her big blues and repeatedly asked me, “Cry? Cry?” “Yes, mommy cry,” I told her. “I luss-oo mommy,” she told me over and over. Despite feeling the weighty sense of responsibility for pushing Allistaire too far and pure frustration, Allistaire’s gentle, painfully sweet, love filled the space in my heavy heart. Here was the one whom I had harmed and who was hurting and scared, reaching out to me with compassion and love. Allistaire’s grace to me was so lovely and sweet and dear and a comfort.
Because Allistaire’s entire body had been repeatedly covered in various forms of “icky,” I decided an early bath was in order. After the bath I wrapped her up in the towels and we talked back and forth with one another about the fact that she was my “baby burrito.” I decided to go show her cuteness off to one of the nurses and I suddenly felt an immense delight at the idea of having her streek nudy back to her room. The unit nurse manager said he’d be willing to turn a blind eye and so I unfurled Allistaire from the towels and told her to run to her room. So from one side of the Unit to the other a two-foot somethin’ white bald girl ran with chubby bunzers and thighs jiggling all the way, tubes swaying from side to side. She ran right through the doctors doing rounds. Comic relief. I needed it so bad and nobody can stay sad or upset with such a sight in view.
So it’s been a day since then and while there were quite a few more poopy blow-outs and two more throw up sessions, I think Allistaire may be on the mend. Her bed has not been changed since 1am this morning. She wore the same outfit all day. While she still has some diarrhea, it is far less frequent and not nearly as immense in quantity. She hasn’t thrown up since this morning and she is in good spirits. It is hard to know what is causing what. Allistaire’s blood counts are zero, she needed blood (which she finally got Monday morning), she may have mucositis down in her lower digestive tract which could account for the pain she is in which is why we’ve given her pain meds. Of course the pain med has nausea as a possible side effect which could account for the throwing up. Today they tested her stool sample for C.diff and the roto virus, both of which thankfully came back negative. We’re just trying to test what can be tested and do our best to keep her comfortable and protect her from harm. At the moment, my biggest prayer request is for Allistaire’s little bottom which is in pretty bad shape. The skin has begun to break down despite ridiculous quantities of the thickest butt paste you can imagine and constant diaper changes. If it continues to break down, we could expect a fever which would indicate infection and result in the need for antibiotics (which in turn may cause diarrhea). Please pray that the diarrhea would continue to diminish and give her skin a chance to heal.
In the midst of this, Allistaire’s has been in good spirits. Well, at least since she got blood she’s been much happier. Her energy certainly has been less as is evidenced in her disinterest in riding the bikes much, but she still enjoys walking around the unit and occasionally pushing her friend Caden in the car stroller he loves to ride in. We’re holding up. I miss Sten and Solveig but took joy this morning when I got to talk with Solveig for a few minutes and she told me about exploring in the woods and the joy in her voice about the birds she had spied.