11/12/13

Yesterday was a bit rocky. Sunday night Nicole had nausea and a splitting headache. There wasn't much that seemed to help her: sitting, laying down, heat, cold, meds. She really tried a lot of different foods, beverages, but really chicken soup was all that seemed palatable to her tummy. Unfortunately nothing helped with her headache.

Monday morning I took her in to the doctor, both for scheduled follow-labs and to be seen in urgent care for her nausea, headache. The poor Medical Assistant that was doing triage turned as white as Nicole when we summarized her recent medical history.  I don't think she was used to hearing about kids with Nicole's issues.  After a flurry of assessments, it turns out they think the symptoms are due to her medications, not some other serious process. Poor kid was worn out after getting rid of her breakfast while the nurse was trying to draw blood. Nicole wasn't at all happy with being wheeled around in a wheelchair during this. Once in the car finally she acknowledged it was probably best to have the wheelchair: "I guess I'm a little tired...."  We contacted Children's and after her cardiologist teams talked, they decided to reduce one of her meds. This seemed to help by Tuesday afternoon.

Nicole slept much of the day, but by the evening was advocating to attend a service at church for the sick.  I took her with the understanding we would leave when she got tired. Amazing service, huge attendance, standing room only. Luckily we saw a friendly face who had room for us. Cool that a group of people from an East-side church prayer group were in attendance and asked about Nicole; neat for them to see that she was at the service.

By this morning, Nicole's headache was back with a vengeance. Another call to Children's, more consultation, and another medication adjustment.  This time the made a further reduction in the dose of one medication and switched a couple other medications so they aren't taken at the same time.  Nicole was strong through this and went for a short walk with Carl.  She was pretty tired after walking down the street past a couple houses, so came back and slept soundly.  She is taking seriously the recommendation from her treatment team to increase her food intake as well as increase her water intake to about 3 liters per day.  Luckily she likes water and hit her goal by evening.

We had a little scare: we gave her an extra dose of one of her medications this evening.  Quick calls to poison control and Children's got some reassuring answers in short order (I continue to be pleased and amazed with the quick and thorough response of the treatment teams at Children's).  Poor Nicole was pretty scared but was finally reassured that she wasn't going to have to go to the hospital or get poked with a needle tonight.

So, it's off to the drug store for a medi-set tomorrow, and Carl created a better medication monitoring sheet.