My daughter thinks she's a surfboard

Stiff as a surfboard: Trying to get C. into her wheelchair today

Once again, it's a mixed bag of news regarding my daughter C.

We did fresh blood tests a week ago which showed that her liver has improved and her albumin level is within the normal range, though just barely. Also, without taking any diuretics, she is free of fluid retention anywhere in her body for the first time in years.

(Admittedly, that’s the layman’s take of the Hubby and me. The extremities are easy to assess; the abdomen, less so but we’re both pretty confident it’s all clear).

Another perk of that albumin rise is the dramatic progress in the healing of her pressure sores. I’m already allowing myself to dream of life without daily bandaging. (For those as ignorant of albumin’s significance as I was a few months ago, note: low albumin level means failure of sores to heal.)

The doctors, in particular the gastro, had been convinced that C.’s liver was seriously diseased, possibly with a chronic autoimmune illness. You’d expect them to now backtrack and blame the Valproic Acid for the liver mess – which was their original theory. But they haven't. They just concede that C. is a “complex case” and “a puzzle”. (The pediatrician did mention a viral infection as the possible culprit but didn’t elaborate.)

Presumably at our next visit to the gastro, we’ll hear some firmer hypothesis. For now, we’re just reveling in C.’s rehabilitated liver.

But, as I said, this is a mixed bag so there's been no partying to celebrate all the above. Because, despite those positive developments, C. hasn't been functioning very well. She has resumed feeding herself and we're really thrilled about that. But she has also become extremely stiff and won't bend her knees either to walk or to be seated. In the past, she has had a tendency to lock them periodically but she always loosened up eventually. These days, they are constantly rigid to the umpteenth degree. It takes two-three adults to seat her. And when I try to walk her, she just goosesteps.

Seizures have been more or less under control (around two a day) with a raised Cannabis dosage: 22 drops, 3 times a day. She’s also getting Keppra – 750 mg twice a day and Carnitine 500 mg, 3 times a day.

We continue to enjoy our daily help with caring for C. She’s a fantastic young Australian woman who just earned her BA in chemical engineering. She arrived without any experience in this field but is a quick learner, reliable and very compassionate towards C., which has enabled me to sleep more at night, dote on my grandchildren and, so far, keep that Takotsubo at bay.

Walking the gauntlet

We've managed to hold off with starting C. on the Vimpat, though it's sitting at the ready in our med drawer. That's basically the only good news.

Otherwise, C. has been growing gaunter by the day - despite eating well (though not feeding herself, unfortunately). She's also very weak and unable to do assisted walking as well as she used to. And she kvetches with every step. Quite the nightmare.

Her blood test results were all bad (CRP and IgG rose) except for her albumin level which rose. One thyroid reading was bad for the second time although the other two were fine again.

The pediatrician confesses that he's confounded. He'll be speaking to the gastro guy today.

In the meantime, here is a glimpse of C.'s gauntness (I did the sketch). The bandage over her right eye is from the gash she sustained at the hands of her mother. Yes, I dropped her last week while walking with her. It was glued up in the ER 10 days ago. So amidst this mess we can at least rest assured that she won't have a bad scar to mar her beautiful face.

To stop me from twiddling my thumbs

We came home from our HMO's fund's wound clinic (who knew there was such a creature?) with a laundry list of tactics to trounce the pressure sore plague.

1. The medicine and bandages we've been using were replaced with totally different ones that I must change twice daily (instead of the previous once). The new bandage is just several layers of gauze drenched with iodine and  taped down over only one corner which we alternate at every change. (All the plastic layers we used were irritating the surrounding, healthy skin). It's in the photo above.
2. A swab was taken from one of the sores for culturing - must call back in several days for results when we'll adjust antibiotic accordingly.
3. In the meantime, a course of antibiotic - ciprofloxacin.
4. Bring C. to a gastroenterologist to figure out why C.'s albumin dropped recently to sub-normal levels. (Low albumin contributes to poor wound healing.)
5. Consult a dietitian for tips on how to boost albumin levels dietarily.
6. Make appointment for HMO occupational therapist to visit home and assess C.'s sleeping and sitting equipment. Then, per her advice, order a state of the art new mattress and a new wheelchair - Health ministry will subsidize the purchases if it's done this way.
   Change C.'s position every two hours, including during the night. (Confession: I don't do that; I find uninterrupted sleep just too tempting.)
7. Do not use C.'s brace for several days - nurse raised that to a week. I gulped, panicked and pleaded with the doctor to permit its brief use daily. I emphasized that without any standing or walking, C.'s quality of life will plummet. He immediately acquiesced recommending I cut a ring of foam padding to place around the foot wound. Moral of that exchange: don't accept unreasonable Dr.'s orders as gospel.
8. Get a new brace.

The doctor and nurse  at the clinic were incredibly kind and considerate both to us and each other. Yes, you read that right: the doctor and nurse worked as a team. It was a first for me.

With the hubby boarding a flight tonight to his hometown for his mother's funeral, most of the above tasks will on the back burner for a while. 

Here (above) I am sharing C.'s pressure sores with that impressive team at the clinic.