Fresh wounds

Last week, we had a glorious day outdoors, revisiting Echo Woods, the Climbing Maple Tree, checking sap buckets. We found fresh wounds on many of the maples, burrowed by a giant Pileated Woodpecker. The shavings and sawdust littered the snow up the path through the woods. We explored the holes with our hands, revisited lessons from last summer about identifying trees from their bark, noted the differences in the phloem, that inner bark where the trees life flows.

The days this week are notably different. Every day, Amy's fresh wounds become more apparent. She sleeps more with each passing day, and vacillates between manic hyperactivity and groggy irritability when she is awake. She has set up camp on one end of the sofa, with her favorite "pillow pet" from Auntie Megan and Uncle Ben, her baby quilt, her favorite books. She tries to watch movies, and gives up because focusing on them is frustrating and causes her pain in her right eye. About every 5 minutes, she is either falling and hurting herself or becoming frustrated or angry. Tears flow so frequently. I feel that sinking feeling of familiarity: we've walked this part of the path before. I don't want to be there with her again, I don't want to watch her "Amy-ness" slipping away as the days go by. I want some doctor, somewhere, to be intrepid, courageous, intuitive, innovative enough to stop the tide this time.

Today we spent hours upon hours at the clinic, trying to navigate the care system at our primary care clinic. I brought a thick packet of research articles documenting cases of this particular type of meningitis in previously healthy patients, articles that describe how it is sometimes seen in healthy people after ENT surgery. Amy's primary care doctor watched her closely for a while, and spoke at length with two other doctors, a pediatrician and a pediatric neurologist. The neurologist has agreed to come in early tomorrow to see Amelia promptly. He feels another spinal tap is probably necessary, perhaps another MRI and a laryngoscopy (scoping the deep structures of her throat and windpipe). The good news is he is willing to look deeper for a source of infection. The bad news is he does seem skeptical about the particular bacteria that was found in Amelia's CSF culture. We do have an "ace in the hole": a leading researcher from the University of Michigan in Ann Arbor has been corresponding with me regarding Amy's case, and may be willing to treat Amelia if no one else is. I loathe the thought of going that far away from home...but Aaron and I remain committed to doing whatever is necessary to get Amelia the treatment we so passionately believe she needs.

Inspecting wounds, cataloging the damage, isn't a pleasant task. We brought in the wood chips and sawdust, wounds of our syrup trees. Smelled it, looked through it and learned about the particles that make up the heart of that tree that gives us sweet sap every March. Now we look at Amelia's particles again...deep in her neck, the hidden folds and loops and twists of her precious brain, the sweet fluid that smells earthy of life that will flow once more from her spine. Inspect the wounds, catalog the damage, smell it and look deep and learn what ails this sweet child.

No matter what. No matter what, I will trust You. No matter what, I will believe You are working a plan that will be for Your glory and [her] good. No matter what, I refuse to be bitter. How hot can the furnace get and you still say, "No matter what, I love God, and I am committed to Him"? Psalm 95:7 says, "Today, if you hear His voice, do not harden your heart." Satan wants to shame you and grind you under his heel. He wants to take you back to square one and make you think you haven't made any progress at all. As a blood-bought son or daughter of the living God, you were born for something much better than that! Guard your behavior. It's not the hardship but your response that really matters! Jesus paid a price for our sins. His death was an atoning sacrifice. I Peter 4:1 commands, "Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking." "Arm yourself" is a military term that means get ready for battle. Put your armor on. My mind-set must be: I'm going to get through this. This is my focus. I'm not surprised by this. God has this planned for me, so I'm staying under it.

from When Life is Hard, by James MacDonald

Going forth

Prayers today as I go fight for treatment for Amelia. Please see my prayer request list from yesterday afternoon here. I am praying for the quickest and easiest solution to be made possible.

Cliffs notes: Amelia's infection

He will make plain my duty when the time comes, and until then it is not my concern. We make our lives insupportably complex by disobeying Jesus' command to take no thought for tomorrow. Planning for tomorrow, when planning is necessary and possible, belongs properly to today. Worrying about tomorrow belongs nowhere. The Lord gives us daily, not weekly, bread. He gives strength according to our days, not our years. The work, the suffering, the joy of each day are given according to His careful measure. ~Elisabeth Elliot, A Path Through Suffering

It became apparent to me that an abridged version might help some understand what Amelia is battling currently. As a nurse, I struggled with this all the time: immersed in medical jargon and mumble-jumble on one side of the door, and trying to make it clear without "dumbing it down" for the patient on the other side of the door. Apparently, I've lost some of that skill in my own personal version of medical chaos. I will try again here. Hope it helps! Here goes:

The fluid surrounding Amy's spinal cord has bacteria in it. The bacteria is rare and causes a slow-growing infection. The doctors at the U of M aren't willing to treat the infection because they feel it could be a contaminated sample. Aaron and I disagree: we feel Amy does have this infection. We are going to pursue treatment with IV antibiotics at another hospital.

Prayer requests for this week:

• Doctors in Eau Claire will be willing and able to give Amelia the IV antibiotics she needs
• Amelia will respond to the antibiotics and the infection will be killed
• The antibiotics will also cure Amelia's throat infection, which she has had since last July
• Amelia will be able to eat and gain back weight she has lost. In the past month, she has lost 4.5 pounds, and she is struggling to have the energy and desire to eat
• Amelia will quickly regain skills and brain function she has lost in the past 5 months
• Our marriage and our children will grow and flourish against all human odds under this continued stress
• Relationships at the U of M will be spared even though we are choosing something different than they recommend
• People will see the witness of Jesus in our family through what seems now to be a never-ending trial

Unanswered prayer

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands that shaped the world
Are holding me, they hold me still

~ Your Hands, J.J. Heller ~

The bacterial culture done on Amelia's spinal fluid last week grew a particularly rare anaerobic bacteria, Propionibacterium acnes, on Wednesday, 5 days after the fluid was removed from her body. This bacteria is a common skin bacteria, and usually only causes meningitis or encephalitis in children with hardware in their brains (VP shunts) or post-neurosurgical patients. However, there are a few cases in otherwise healthy children, and most of them are in children who recently had otolaryngological surgery (ear/nose/throat). It is a form of chronic meningitis, with a 2-12 week onset involving severe headaches, nausea, weight loss, double vision and eye tracking abnormalities, and increased sleep, and, very rarely, low-grade fevers. Amy has every one of those symptoms. She is getting worse every day again, as the pressure builds up around her brain.

The problem is that the pathologist who found the bacteria and the infectious disease doctor who was called about it (neither of whom know Amelia or any of the details of her case) are calling this a contaminant. Not a real infection. Her neurologist tend to agree because it would be "so rare" for a child without brain hardware or implants to have this type of infection. After many hours on the phone and internet yesterday, and finally some encouragement from our primary care doctor, Aaron and I took Amelia to the ER at the U of M last night. They admitted her but didn't treat her, and discharged her today with no treatment other than steroids.

To say I am beyond frustrated is probably the understatement of the year. It feels as though we've finally found an answer to what is wrong with this precious girl, and instead of treating her, we are disregarding it. I feel helpless, hopeless, and very, very alone. It seems ridiculous that we should wait for a Monday appointment with her primary care doctor (who probably can't help anyway), her appointment a week from now with the ENT surgeon, who will check the nodules on her vocal cords, which I am sure remain, and another appointment 6 weeks from now with the neurologist. This little girl is not recovering like she should. But what am I supposed to do??

Fear is the hardest emotion to hand over to God. It's rooted in pride, really - what I am really saying is that, if I were only allowed to, I could change the date of my daughter's death, or her eventual recovery or permanent disability, by my knowledge, will, drive. That's simply not the case. I really have no more idea than the neurologists - with the exception of a healthy dose of mother's intuition - whether antibiotics are the necessary treatment in this situation. But I am afraid. I am afraid for Amelia's life, I am afraid for Amelia's personality, behavior, intellect, motor skills. What if we are missing the very key to this entire mess by giving in on this issue? Yet, what more can we, as mere parents?

Amelia was given an orange bear at the ER last night. From Hugs Across America. In the tag, in a child's scrawl, it says "God will heal you". So, at the end of the day, eyes burning from reading research and heart breaking and mind aching, I cling to that. In childlike faith. When everything else falls apart, that remains.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”