What a Way to Start Life!

Samuel Erik is 3 weeks old today. What a way to start life!

Not many changes today. His ventilator settings were adjusted. Some adjustments felt like progress – the concentration of oxygen that he was given was dropped from 75% to 55% (room air is 21% oxygen). But these were compensated for by others that did more work for him (i.e. holding his breaths for longer). He seemed to tolerate these changes well and there was a little sign of his lungs doing a little bit of work (a good thing). His x-rays looked the same again. Doctors have been going after the fluid in his lungs (suctioning, saline treatments, respiratory therapy, antibiotics, bronchioscope, etc.) pretty aggressively for a while now. What I hadn’t put together until today was that the fluid is not just in the chamber of his lungs, but in the lung tissue itself. The left lung seems totally collapsed under the weight. The fluid build-up, especially in the lung tissue, is part of a larger problem (more on that in a minute), but doctors are trying everything at their disposal to help his lungs. Somehow in the midst of this, his oxygen saturation is still adequate.

The issue getting a lot of the doctors’ attention these days is Samuel’s fluid build-up. He is so swollen – eyes, face, hands, legs, feet, belly, lung tissue, etc. It looks painful. It seems that the primary culprit is his kidney function. In addition, to the treatments that I described yesterday, they have given him lasix (a diuretic) to help his body expel fluids. The catch is that these meds take a toll on the kidneys, which are already struggling, so they are giving him a really low dose. But the dose is so low that it has done little good.

Dr. Kuo gave us a little clearer picture of the cause and effect cycles that seem to be plaguing Samuel’s body. His heart is shunting oxygenated blood to the right (deoxygenated) side and now some deoxygenated blood to the left side/aorta (which sends oxygenated blood to the body, limbs, and organs) as well. On the right side this means that his lungs are getting “flooded” and taking on fluid. However, as mentioned before, the lungs are unable to process this fluid because of problems on the left side. From the aorta (left side) some of the blood getting to the limbs and organs is deoxygenated (though less than before… if indeed the pulmonary hypertension is improved). This means that these organs are not getting the oxygen that they need to function optimally. So, the kidney, intestinal tract, and liver are all struggling. Because the kidneys (the body’s fluid filtration system) are struggling, fluid is backing up. We already know what this is doing to his lungs (saturation and collapse) and body (swelling). Because his intestinal tract is struggling, he cannot take breast milk, and doctors are guarding against intestinal perforation. Because his liver is struggling, his billirubin levels continue to go. Round and round it goes. The best that I can figure, we need Samuel’s pulmonary hypertension to continue to get better and for Samuel to get healthy enough for the surgeon to be able to tie of the PDA (duct between the pulmonary artery and aorta) – or better yet for the PDA to close on its own. That or a miracle. And so we pray.

Beth, a P.A., told us today that Samuel is still a “puzzle.” She wants a name for what’s going on, but so far they can’t really figure out why he is so sick. In a week or so we’ll get back results from a chromosomal test that looks for something like 40,000 different things. Apparently Beth hopes that that might help clarify Samuel’s case some.

A simple, but profound thought occurred to me today: This is not hard for God. This is not a mystery to Him. He is not puzzled. In fact, He knows exactly what is going on. His plans will come to pass, and no purpose of His can be thwarted.

Over the last several weeks, a number of folks have commented, with apparent admiration, about our strength or the strength of our faith. The thought occurred to us, however, that faith itself is unimpressive. Everyone has faith; everyone believes something. We all see the world, respond to circumstances, and make decisions based on these beliefs. If there is anything remarkable about our faith, it is not that we believe. It is Him in whom we believe. We place our trust in Jesus Christ the Son of God, the Lord and Savior of our lives. When we have strength or peace or hope or rest or comfort, it is not because we believe really strongly. It is neither blissful delusion nor will power. We experience them because in His grace, God gives strength, peace, hope, rest, and comfort to those who come to Him. Now these days it seems that I have to fight every morning to rest in this faith... and admittedly, I am not always as successful as I would like to be. To quote an old hymn, “Oh for grace to trust Him more.”