Project Seizure-Freeedom

I have found that through the most difficult and painful times in my life is

when I have grown the most and God never left me.

He hasn't left you either.

Wednesday, September 1, 2010

The Fable of Failing to Thrive

As promised in my last post, I will share two things that happened while we were in St. Louis for the International Christian Retail Show.

When I wrote chapter ten, which is titled, “The Fable of Failing to Thrive,” I did so thinking that what I wrote about would never happen again. After all, Larry and I now knew better how to handle our daughter's medical care and avoid critical mistakes. What we didn't expect was that this degree of egotism—which has an unhealthy habit of accompanying us humans—would wreak havoc during a crucial time this summer. In fact it placed Christina's well-being at risk and threatened to have my husband and me arrested. True story.

In order to understand what happened this summer, the story needs to be told from the beginning. An excerpt from chapter ten of Good Morning, Beautiful is below. This is where it all began.

Christina was losing weight fast and quickly looked thin and pale, becoming lethargic. She seldom moved. She reached a critical state of dehydration that was not reversed by the IV solution. It didn’t make any sense. Since being on the ketogenic diet she had become a good eater. Why, for seemingly no reason, would she stop eating?

Twenty-four hours after being admitted—she seized, wriggling herself to a sitting position before falling over. I could hear the metal crib rattle and shake as her head fled into the mattress. Rushing to her side, I lowered the crib and lifted her face from the mattress, positioning her in my hands. Thick tears streamed down drawn little cheeks giving way to an unnatural smile. It was a dark intense seizure that rolled in without warning. More intense than before, her seizures came in sets or series sometimes only minutes apart—more than 100 per day.

Three days after being admitted, most of the results were back negative for any kind of infection or disease. Confused that there was nothing to treat, the head nurse sat on the floor Indian style, with Christina. She dropped droplets of formula into the little clenched mouth of Christina, but she refused to swallow.
“I don’t understand why we cannot get her to eat. Have any of the test results come back in yet?” I asked.
She shook her head. “So far nothing has come back positive.”

“Have you ever seen anything like this before?” I asked.

“Well, I’ve seen this in infants who fail to thrive,” she answered.

I was afraid of even knowing what that meant, but had to ask. She explained it as a neurological condition where children give up the will to live—they stop eating—they stop surviving.

Thoughts raced: after all little Christina had been through, could she be giving up the will to live? Could my precious little one be refusing to eat or live? The visit with Dr. Gomez flashed in my mind; he had been positive about everything. Did we miss something?

Already mistrustful because of previous misinformation, I was not so sure what to think of this revelation. In a way, I was irritated with this nurse for so easily giving such a fateful opinion. Still, the question kept coming back to me again and again: What about the other symptoms? What about the constant diaper changes and throwing up? I was fearful of what might be causing it. Could there be a genetic disorder, or a cancer, that had been missed?

When Dr. Gomez returned my phone call, I explained to him what was happening with Christina. He had already reviewed the notes from Susan but he wasn’t expecting all this.

“What does the doctor think she has? She must have something to make her not want food,” he said simply.
I explained that they were running tests and I would call as soon as results were in. Then I told him that if she needed to be hospitalized for a longer period we wanted to fly her into Rochester and transfer care to Mayo Clinic. He seemed hesitant at first, stating that Christina could not fly until she was hydrated, it would be dangerous for her. Since the return of the seizures, I wondered: When food isn’t eaten shouldn’t the body be in a state of real fasting. Why, then, were the ketones so low and seizures back?
“Without eating, shouldn’t they be high like before?” I asked curiously.

“What—?” He paused awkwardly then spoke, “What kind of fluids are they giving her?”

I followed the tubing up to the IV bag held by the steel loop n top of the stand and read the black print: “D-e-x-t-r-o-s-e, it says dextrose.”

A slight grunt and gumble was heard through the phone, then silence. “It’s too late now,” he broke in disappointedly.

Dr. Gomez explained that the IV fluid given was wrong, because dextrose is sugar. It stopped the ketosis Christina was in. The seizure freedom was over, due to an unnecessary mistake. The apprehension in his voice about bringing her back to Mayo subsided.

“She needs to be hydrated before traveling here, that’s first. Then I want her to eat. If she won’t eat on her own, they need to tube feed her. Is that clear?” He was short and to the point. “Call me when she is ready and I will make preparations for her to be admitted.”
Anger ripped through me. Did this hospital even care?

A flustered nurse ran to get the doctor when I pointed out the mistake. I felt as though he had let us down—let Christina down. When he arrived through sobs I told him just that and more: He didn’t keep his promise about making sure the diet would be followed—even though the instructions right down to the IV fluid had been faxed over by Susan. Shaking his head in disappointment, he agreed to order the feeding tube, and left to do so.

With relentless seizures back, Larry and I again tried to balance. … I pressed the nurses’ call button, and waited for 20 minutes. If it weren’t for Whitney being there, I would not have been able to unwind the tubing and lift Christina safely out of the crib. When the nurse finally came in, I unloaded frustration at the hospital that seemed to fail us. “No one here seems to care!” I reminded her about the wrong IV fluid.

“But, we needed to get her hydrated,” she defensively answered.

“There might be a reason she isn’t eating.” She didn’t say the exact words the other nurse had, but I knew she meant “failure to thrive.”

That night I couldn’t sleep and listened to Mathew’s soft breaths as he slept near Whitney on large cushioned mats and blankets on the hospital room floor. Inches away, Christina’s crib sat empty. She had fallen asleep in my arms exhausted from the day’s run of seizures. My mind wouldn’t quiet enough to rest, is our daughter failing to thrive—will she survive this? I prayed God would once again give me direction and help us to help Christina.

Thirty-six hours later, with a frustrated tone, Dr. Gomez asked why the feeding tube had not yet been placed. He was pensive and I wondered if he was angry when he said, “I’m sorry you are having trouble. But, please, give the doctor in charge this message: "Feed the baby!”

By the time Larry arrived that evening I had been to the nurses’ station several times pleading for a feeding tube. Finally, Larry sternly threatened going to hospital administration. Not long after, a nurse and dietician arrived with a portable pump and equipment for tube feeding. After inserting the tube into Christina’s little nose, they wheeled her to X-ray to make sure it was placed properly and finally, the dietician brought in the formula.

“After looking over the formula, I changed the ratio,” she explained.

I was shocked that she changed something so important without asking.

“What—why would we change the formula?” I sparked.

Her inability to understand the diet was part of the reason we traveled 1,200 miles for help—and now she was insistent that the diet had been formulated incorrectly? I tried to think of words to say but decided to remain silent—no one was listening anyway.

My daughter had lost two-and-a-half of her twenty pounds—and was lying lethargic in her crib. I wanted nothing more than to feed her. After filling the portable pump with formula, the machine began to pass nutrition into Christina’s body. Early evening, Larry returned to the hospital looking wrung from a long day at the office and worry about Christina. He held a white envelope and without saying anything, he placed it in my hand. Then he picked up Mathew and gave him a bear hug. I looked at him curiously.

“Two tickets. One for you, one for Christina, and your flight leaves tomorrow. The flights were expensive, we couldn’t afford all five tickets, so I’m driving up with Whitney and Mathew. Whitney’s mom said it is okay for her to go. My brother Jim will pick you up at the airport and drive you to Rochester.”

By now, I was sick of tears, but could not fight them off.

“Are you okay?” Larry inquired.

“Do you think she is going to survive this?”

“That is why you’ll be on a plane tomorrow. …” Overcome by emotion, he stopped.

After requesting release information, the head nurse stood outside Christina’s room obviously disturbed, searching for the words, “I-I don’t know if the doctor will release her.”

Larry spoke matter-of-fact, “She is re-hydrated and per Dr. Gomez’s instructions she is getting food via the feeding tube. plans on stopping me.”

Five days after being admitted for flu like symptoms, Christina had lost two-and-a-half pounds. Her face was thin and pale, bruises from attempts at IV’s and blood draws marked her arms. A feeding tube held in place with tape ran into her nose, as we took a step of faith and headed for the elevator. I wondered if someone would try to stop us, even worried for them if they did—Larry had a look of adamancy. He was ready to take on whomever if he needed to.
My eyes burned with sleeplessness fed by anxiety, fear, and the seizures that riddled each night. What was it that was trying to take our daughter’s life? Countless blood, urine, and stool samples were taken as witnessed by numerous bruises, her weight loss evident when I held her. I fought anxiousness and tears with prayer—but struggled not to fall into the pit of despair. The nurses and doctors all had ideas of what could be causing our daughter to be wasting away, from salmonella to food poisoning to the worst of all, failure to thrive. But their theories came to nothing. We had nothing to treat—and that nothing was trying to take her life.
The following was written by Jim Abrahams, Founder of The Charlie Foundation To Cure Pediatric Epilepsy.  Excerpt from Good Morning, Beautiful.

The medical destiny of each of us and our
children is largely up to us. To think otherwise
can be damaging. There is a tendency when we walk into
a doctor’s office to want to hand over our problem to the doctor
and say, “Here it is, please fix it.” It’s comfortable, it’s easy, and
more often than not, it works. Just as we take comfort in deferring to
them, many doctors are unwilling to confide in us that we
may have stepped into one of Western medicine’s black
holes. There are many black holes, and they are deep, and
kids with difficult-to-control seizures are in one of them.
So what does that mean? It means that our medical
problems and our children’s medical problems are precisely
that—OURS. At first, that’s a pretty intimidating
and perhaps a seemingly foolish concept, both to us and
to some physicians. After all, they went through years of
education. They’ve seen countless patients in their practices.
And then we walk into their offices with a disease we
probably don’t even know how to spell. How presumptuous
and perhaps foolish of us, the patients, to ask and
then pursue the hard questions, learn the side effects, get
the second opinions, do the research, and participate in the
cure—in short, to become proactive.
Ironically, the “side effect” of participating in our
medical destinies may not only lead to getting better
sooner. It is empowering.