Sometimes "I Love You" means saying "Goodbye"

Yesterday was hard.

In the process of trying to determine the root cause of Maggie's problems, the doctors here have consulted with their expert on genetic disorders. His best guess about the source of her acidosis is something called pyruvate dehydrogenase deficiency which, as we understand it, is an inability of the body to produce an enzyme that is part of the process that converts glucose to energy. Is results in a build up of pyruvate and eventually lactic acid. This is a sub-cellular process and is not curable by human medicine.

Fortunately, our God is not human.

In treatment terms, at some point the drs believe that the current level of treatment will cease to be effective, and that the next step is dialysis. Again, this is not a long term solution, and would be a very painful and traumatic experience for Maggie, not to mention the inherent risks of major surgery on a newborn.

For most of last night, Maggie's pH level was hovering between 6.8 and 6.9. This is low enough that if it stays there, her systems will begin to shut down.

So we've had to begin the thought process of how much treatment is appropriate, and where to stop. We've decided that we're not going to put her through dialysis. If she goes that route, we're going to take her off of the machines, and enjoy the time we have left with her as a baby without all of the tubes and wires.

This morning, however, she has surprised everyone and rebounded above 7.0 and has been climbing. God's not ready for her to come home just yet!

Today is even harder.

At least that's what we thought early this morning.

In our daily conference with the doctors, it became clear to us that what we were seeing is most likely a delayed reaction to the medicine that she was on all last night. At some point in the night/early morning, the line carrying that medicine pulled out of position, and the doctors were unable to restore it to the correct position. Without major surgery, that is the only way they had to get her her medicine. Additionally, the medicine had already begun to increase her potassium levels, which would eventually be fatal in themselves.

From here on out, each additional medication that we elected to give her would add another layer of potentially fatal chemical imbalances, until there were simply too many to juggle. This, added to her underlying metabolic problems, makes it clear that human medicine is not going to keep her in this world. Any further level of treatment is simply going to treat symptoms and cause her pain without changing the final outcome.

Tomorrow will be the hardest.

Sometime on Tuesday, we will take her off of her ventilator, tubes, and wires. We will read her stories. We will sing her songs. We will pray with her. We will commend her into the loving, all-powerful, faithful, healing arms of our Lord and Saviour, Jesus Christ.

Amen.