When you are helpless {Mayo Day 5}

The results from this hospital stay are so depressing on so many levels. Last night Amelia started reacting horribly to the glue used to attach the electrodes all over her scalp (about 30 of them). She screamed, thrashed, and begged me to remove them, all while shaking her hands in the air because she was obeying and not scratching at them. When I finally got her to sleep at 4 a.m., I vowed not to let them touch those electrodes again...just take whatever information they can get, without the usual morning process of gluing loose electrodes and filling them all with conducting gel again. At 11:30 a.m., I praised God because they hadn't come to do so yet, although they are usually here by 9 a.m....I assumed this meant the electrodes had by some mercy survived the night intact. So I allowed a nurse to give me a 20 minute break so I could shower. I heard her screaming above the water running and the fan blowing. Scrambled out of the shower and scrubbed dry with the harsh towels as quickly as I could, threw my clothes on and ran out.

They were gluing the electrodes, trying to massage her forehead where the skin is dented, red and irritated. She was screaming for mercy and begging for Mama. My heart broke like it hasn't since last November. I simply crumble when I am party to holding my child down so they can inflict pain on her...pain that seems futile to me. They've already shown that she's not having seizure activity during the day. I just got done speaking with the doctor (the famed epileptologist), who says we need to pursue other diagnoses to explain her balance, speech, and eye tracking issues during the day. SO WHY ARE WE GLUING THESE ELECTRODES BACK ON HER POOR SCALP, EXACTLY??!!

The nurse in me wants to tell them to quit. But the parent in me...they have her over a barrel. The only way they'll listen to me is if I'll sign Amy out for early discharge today. Otherwise I have to submit to every jot and tittle of this harebrained plan.

The news today is a mix of bad and worse. First, they haven't captured a grand mal at night, so they have no new information about where those seizures are coming from. All they've gotten is the same thing they've gotten on the routine EEG - epileptic spikes in the middle back of her brain. Second, the activity during the day isn't seizures, but is plainly visible to the neurologist and the nursing staff, all of whom agree it is not normal and needs further diagnosis. Which means instead of having a clearer diagnosis at the end of this trying 6 day hospital stay, we will actually have a muddier one: a child with epilepsy who also has something else that remains undiagnosed. In some ways, we have been plunged back into the pool of uncertainty we were in last March. Is it brain damage, a genetic condition, a metabolic disorder, a life-threatening neurologic illness? Very few things have actually been ruled out at this stage. After this hospital stay, we aren't exactly going to be running back for more, either. In some ways, just when we need to be pursuing this harder than ever, we are most exhausted and tired of the whole doctor/hospital rigamorale.

Be merciful unto me, O God: for man would swallow me up; 

he fighting daily oppresseth me.

What time I am afraid, I will trust in thee.

In God I will praise his word, in God I have put my trust; 

I will not fear what flesh can do unto me.

Thou tellest my wanderings: put thou my tears into thy bottle: 

are they not in thy book?

When I cry unto thee, then shall mine enemies turn back: 

this I know; for God is for me.

In God will I praise his word: in the LORD will I praise his word.

In God have I put my trust:

I will not be afraid what man can do unto me.

Thy vows are upon me, O God: I will render praises unto thee.

For thou hast delivered my soul from death: 

wilt not thou deliver my feet from falling, 

that I may walk before God in the light of the living?

~from Psalm 56~

Pray for me, friends. I am feeling helpless and alone. I can do little to comfort Amelia or keep her happy through the itching. I can't seem to talk sense into either doctors OR nurses. It takes over 2 hours just to get a dose of Benadryl because of their safety protocols and the nurse's unwillingness to override them. I was told everything from - "she's just throwing a tantrum" to "you're making her worse" last night.

Have you ever felt helpless as a parent? What do you do, in that moment when you are holding your child down so they can do to him or her exactly what you don't want to let them do? How do you advocate for your child? Do you simply advocate before almighty God, or have there been times when you stuck to your guns and defended your child from men...doctors, teachers, or others who thought they knew what was best for your child when it violated your own instincts?

When I am tired

When I am broken...

When I am lonely

When I’m surrounded

When I’m uncertain

Your love remains

When I am mourning

When I am waiting

Your love remains

~ Your Love Remains, Steele Croswhite

*Photos from several weeks ago...a bath floating in the arms of Grandma Debra after an afternoon of what we thought was partial seizures. This is what Amy is dreaming of right now. :-(