Independence Day 2015 Update #86

Julie’s Independence

Shortly after sending the March update, we took Julie in for an evaluation with a feeding therapist recommended by Julie’s new GI doctor. We went through the usual routine of forms, questions, and explanations. Eventually, the owner of the clinic came to us giddy with excitement. Julie exhibits the classic symptoms of a problem with her inner ear. Julie’s cochlear (hearing) and vestibular (balance) systems work out of synch with each other. The owner of the clinic assured us that Julie would begin eating very soon. She came into work on her day off just to personally get Julie started the next day.

At first, we didn’t see much improvement in Julie. Little nibbles of the usual foods, but nothing dramatic. Less than one month into therapy, we met with a nutritionist. Julie’s excellent weight and health allow us to begin reducing her pump feedings starting…today! We agreed on a 25% reduction in pump feedings which Julie would make up by eating orally (about 300 calories a day).

The change caught us all off guard. This required planning and one-on-one work with Julie. We aimed for three meals a day plus a snack. Sarah did the cooking, calorie counting, and note taking. Both Sarah and I worked intensely with Julie – right in her face sometimes – for about 90 minutes per session. We cheered & waited, harangued & waited, and instructed & waited. Julie spent a little less time than usual connected to the pump for her usual routine where we could all get a break.

The next week we reduced pump calories by 25% again. This time we removed one of the 30-minute pump feedings and doubled oral intake for each meal (plus snacks). We exhausted ourselves from pushing Julie so hard to eat.

The third week meant another 25% reduction. One abbreviated pump session and four meals/snacks filled each day. Sarah and I split the meal duties and sometimes worked in tandem. Julie’s pre-school ended for the school year during this week. Although we didn’t quite get as many calories into Julie as we needed, her weight held steady for her weekly weigh-ins.

The nutritionist skipped the fourth week, so we waited until after Memorial Day to cut the final pump feeding. Mealtime continued to take upwards of two hours four times a day. By the end of June – after only three months of therapy – Julie had completed a full month of eating completely on her own. We hid the pump and all feeding supplies from Julie so that she wouldn’t try to revert to it again.

Julie felt the temptation several times since the pace remained grueling for her, Sarah, and me. But we kept working hard on her and didn’t give up until she finished each meal and became truly full. We made a few mistakes along the way, but our patience and hard work paid off every day.

I called Julie’s doctors and got release to remove the button. We set the day on June 30^th which was five weeks without the pump. We considered driving down the Dallas to celebrate, but settled for a party in Saint Louis. Several family and friends came over and celebrated Julie’s independence from the feeding pump on July 3^rd.

Helen’s dependence

While all this was going on, my mother broke her hip. She fell in the family room while trying to sit at the reading station the morning before Julie went for her initial evaluation. By afternoon, the pain became unbearable and Helen spent that evening in the ER after an ambulance ride. X-ray and CT scan were unrevealing, but an MRI found a hairline fracture at the neck of the left femur. She had surgery at the same time as Julie’s first therapy session. I left the hospital as the staff carried Helen to prep her for surgery, took Julie to therapy, and arrived at the hospital about 30 minutes before Helen returned to her room.

I spent the next three months driving back and forth between the hospital, rehab facility, and Julie’s feeding clinic, racking up about fifty trips a month plus church, school, and shopping. My sister, April, provided invaluable assistance transitioning Helen to the rehab hospital. I slept for almost a day during my first break in months.

Helen violated her hip restrictions, argued with the therapists, and wouldn’t wait for help to the toilet. She would prowl the halls at night until the staff would put her in “timeout” in a wheel chair near the nurses’ station with a cup of coffee. She complained, but clearly enjoyed being at the center of attention.

Helen fell again at the end of April and wound up in the hospital for three more days. That fall messed up the first surgery. She suffered for another six weeks through three therapy sessions a day with a deteriorating femur wondering why everyone else could go home and she remained stuck with little progress to show for two months’ rehab.

At her next doctor’s appointment, the x-rays revealed the worst news. The screws from the first surgery had come loose and protruded on both ends from the splintered bone into soft tissue. We spent the next three days going through the routine pre-surgery checks to completely replace the top of the left femur.

This time the surgery worked completely, yet Helen continued to fall about once a week as she resumed her previous behavior. She had fallen into a funk from the pain drugs and time away from home. She also had several panic attacks and times of confusion. We often discussed the mysterious basement of the rehab hospital, its duplicate facility, and the overbearing night staff. With all these issues, it seemed that Helen would need 7×24 care in a nursing home, so I began investigating places for her to live.

My daily trips meant changing out soiled clothes, cleaning the room, checking with the nurse aid(s), getting pain meds, assisting Helen to the toilet, and talking with Helen. She had a daily wish list which began with taking a shopping trip to Walmart or Sam’s Club. We constantly argued over her condition and progress. She insisted that she could walk fine and drive her car even better. Of course, the therapists (and everyone else on Planet Earth) had a different assessment.

Helen’s church friends visited faithfully during this entire period, but nothing could fill her boredom. Her mind continued to wander and I would get phone calls in the middle of the night from the duty nurse informing me of another fall, confusion, panic attack, etc. Helen fell hard on the same night that I removed Julie’s feeding button. She complained so long and loud that the staff finally shipped her off to the ER the next day. Once she arrived at the hospital and received assurances that they would perform an x-ray, she quieted down and stopped complaining about pain (until her pain pills from the morning began to wear off). I spent most of the day in the ER with her – my third time in three months.

I began to approach her about a nursing home, but she refused to even consider the idea. Of course, since we lived in her house, the financial burden of a nursing home would force us out on the street before the end of the year. Otherwise, I would replace the staff at a rehab hospital once she came home. Either way we faced a no-win scenario, but we felt so good from Julie’s success that we really thought everything would work out simply and easily.