What Else on the Medical Front?

As a continuation of this post let's finish up the Amelia's update first. 

Through her medical stuff, I've been sweetly surprised at the gift of mother-daughter bonding. She loved her healthy treats of coconut water, chicken broth and homemade popsicles while on clears (Amelia shares my ideology of a whole foods diet). She leaned on me with her tears when hunger got the best of her and I was actually emotionally available. Through circumstances I would never choose came another piece I've been seeking. She's also been my white knight through the gaggy months, offering to change Josiah's stinky accidents and starting the diaper laundry! Just this week Josiah seems to have figured out that last step of potty training, wonderful!

The next week (Mar 21st, for my records) Amelia had her first seizure in 7 years. We don’t know if it was an absorption issue due to increased motility post-clean out, early puberty (hormone changes can complicate seizure control) or a "fluke". It is so different having a child who is able to describe how the whole thing felt, an aspect we always longed for during Lydia's frequent seizures when we couldn't interpret how to best comfort from her mere cries. Amelia had missed one dose of B6 but has never been so sensitive. Time will reveal whether her seizure threshold is changing or if this was an isolated event.

That same day we got a letter from the Miami Children's ICU doctors. They decided to forgive the ginormous remainder of our debt due to our faithful ($5) monthly payments over the past 10 years. This was the hospital we went to for their nationally renowned Epilepsy Center in pursuit of seizure control for Lydia before the b6 diagnosis. The hospital was in-network. This group of doctors was not. They were not required to write off any of their inflated charges after insurance paid the lower-than-usual reimbursement.


We went for the higher opinion (a second time) because Lydia's quality of life stunk and we were desperate. The only real question was keto diet or not, which meant placing a feeding tube and stopping nursing, which I had held to tightly because it was one of her only comforts.

She arrived with uncontrolled seizures but otherwise "healthy". 
A nurse tried to throw these pjs in the trash b/c a diaper leaked on them. She obviously didn't have kids!

Lydia spent six weeks there miserable and deteriorating due to lack of communication between specialties, each one insisting the other move first. We could only get face time with the non-influential residents. Care coordination was the job of these (out-of-network) parent-patronizing ICU doctors. They told us they had no concerns for her quality of life, or preserving brain function/development, just keeping her alive. That they barely did. So they let seizures go on for hours rather than keeping a handle on them, in order to spare the "routine for Lydia" meds that compromised breathing in other patients. As we tried to warn, the amount of such meds required by the time the seizures impressed them was so great that indeed full life-support was in order.

Random: Have you considered that a baby sleeping on her tummy, with a pillow and a paci tied around her neck is not really a risk if she is on monitors all the time in the ICU? Anything to calm Lydia as it was getting harder.

We eventually had to sign a DNR stating they wouldn't have to reintubate if the breathing tube got knocked out mid-flight in order to get our exit papers. We hopped on an air ambulance back to the PICU in Savannah, GA for Lydia's first we-think-this-is-the-end Independence Day and following hospice referral.

This is how she left Miami, less the headdress. I still don't like darn green sheets that indicate "Maimi continuous EEG monitoring" for Lydia's drug induced comas.

And here she is a couple days later safely back in Georgia, still wearing her orange DNR bracelet but maintaining her own blood pressure and breathing.

With admitted exaggeration my best analogy about the accounting letter we received is that it felt like our concentration camp guards had just forgiven our $175/meal dining hall debt from our stay. Their letter hit me strangely harder than Amelia's seizure, for untold layers of reasons. Of course it's a tremendous blessing, just a surprising grief trigger as well. While I tried early on to get the bill forgiven through phone calls, I never composed THE letter that burdened me, except in my mind during sleepless nights sprinkled over the last decade. It no longer needs to be sent so thanks blog (and blog readers!) for giving me an outlet to put this "to rest".

You could say these past few weeks have been a time of much long awaited progress, a year out on Amelia's GI exploration, 10 years out on the medical bill and a year out from Jason's "grief physical" last Spring Break. He finally followed up with recommended tests for himself and learned that he has sleep apnea to the tune of significant breathing pauses 20+ times an hour. His chronic headaches and fatigue of years is much improved via CPAP use at night.


His long-debilitating allergy symptoms are also way down, thus his need for sedating antihistamines. He actually spent his whole Spring Break building a fence in the backyard. These record-setting pollen counts would previously have tethered him to the bed. The ENT is recommending surgery to straighten the inside of his nose and remove tonsils, to further improve both sleep and the awake breathing. This is one of many strange sources of encouragement these days.

That concludes the medical aspects of the past 8 weeks. Woohoo! Did my description of Amelia's colon make any sense? When discussing it in person most have looked at me totally confused. Hopefully I'm improving. I didn't elaborate online about what's down the road because one, we aren't certain, two, we aren't ready for Amelia to carry that burden of knowledge and three, we have time on our side. Yes, we are discussing higher opinions for her at some point but just come back and reread this entry if you wonder why we are cautious in our proceedings. As I said, Amelia is getting the benefit of her care being informed by Lydia's.


There is a lightness in pondering that Lydia is no longer suffering the damage done to her body by sub-optimal medical care. Josiah now has my cold and feels so crummy that he asked for an early nap. Moments before he said "Jesus doesn't want me to be sick. He wants me to be happy." While I hesitated to jump into a deep theological response with a wheezing three-year-old he bridged the conversation for me. "Jesus didn't want to die on the cross either. He loves me." "Yes, Josiah, God wants you to be 'happy' forever with Him in heaven. That's why Jesus died on the cross even though He didn't want to." In my head I added that God also found no delight in Lydia's brain damage, Josiah's cold or his Son's torture and death but He rejoices over the eternity He is creating and the souls He's redeeming through His control of even such unhappy things.


One more less-burdened installment and we'll be caught up here.