We were hoping to go home today, but it doesn’t look like that is going to be a possibility. Drake is still struggling to regulate his oxygen, and he is dealing with all the side effects of the viruses, compounded by the terribly high glycine levels.
We got more blood drawn today to give us another measurement for his glycine levels to correlate symptoms to lab results when they come. Sadly, we learned that the first glycine level we drew yesterday has not left the hospital yet. I wrote our metabolic doctor and she said unfortunately the lab in Greenwood does not run any samples over the weekend, not even with emergency admissions. She was very sorry, but the currier will likely pick up our samples Monday morning, and we might be able to have numbers from Saturday’s blood draw by late Monday night, or first thing Tuesday morning.
I have to say that was extremely hard to hear…. we can’t do anything to help Drake until we get his glycine levels in range. Every day we have to wait means possibly more brain damage. We have upped his “medicine” (the lab chemical that is the only known treatment that binds with glycine) twice since we have been here. The problem with higher levels of this chemical, sodium benzoate, is that it does by default lower glycine, because the body binds it and wants it out quickly… but it also makes Drake throw up. Our bodies are not supposed to have this kind of chemical at the high doses Drake has to have it… you can time his seizures and throwing up like clock work to when the doses are given. We have to give this “medicine” because due to lack of funding… this is all the only medical intervention NKH children have right now in the literature of published research.
I have never experienced anything like what I have watched Drake live through over the last 2 years. It is hard to put into words and a lot of times I ask myself if this can really be happening in this day and age… with all our medical advancements?…. I don’t mean to sound frustrated…God has put us in an amazing hospital. The specialist, doctors, nurses, and first responders are all very kind, and highly skilled. But even here…. Drake’s care is so limited.
The problem lies that the equipment to run amino acid panels is not a “required” instrument hospitals have to carry. This is currently something a facility can choose to offer due to what their specialties and where their area of expertise is. Hospitals choose what is deemed necessary based on the needs of their patients and labs they need to save their patient’s lives, and manage their care. But with a minority disease…. a rare disease like NKH, only affecting 500 children in the WORLD, there are only three labs in the United States that have “chosen” to offer amino acid panels.
That is why our lab can choose to work 9 am - 5pm Monday through Friday. They have to balance meeting the needs of their patients and making sure they make a profit at the end of the day. This is no fault of their own, they have to be able to keep their lab running.
But what happens to a child like Drake… when you constantly get left behind…
.. you suffer.
You wait days for things that should take minutes. You are overdosed repeatedly on caustic lab chemicals because your disease is so unknown it doesn’t even have the funding for better research. You are used as a human trial for every seizure medicine on the market because there is nothing else to offer you.
We are disheartened….but we are choosing to continue to trust the One that rights every wrong… and gives strength to the broken hearted. And we trust that one day…. because of God’s sovereign plan in Drake’s life … generations of children with NKH will not have to live like this. That Drake’s suffering will not be in vain, and with our efforts, and your efforts - God will move mighty mountains…. because He, and only He can.
We love you and will update as we wait. Please pray Drake stays protected from any other things that he may come in contact with at the hospital. The longer we are here the more susceptible he is to catching something worse. Please pray his glycine starts to come down in a super natural way. The longer his brain stays “sedated” by the high glycine levels, the less he can cough and clear his lungs which can quickly turn into infection. We need God to lays his hands on our boy. We need Him to help clear the path when we can not see. And we thank Him for going before us and with us. Our disappointment is not despair, regardless how badly the devil wants it to be… our hope is not in earthly things… but Heavenly promises.
We love you,
Eric, Tarah, Littles and Drake
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”