Weary along the way...

Have you ever run a marathon? You start out strong, your outlook – optimistic. Steady strides & fixed focus move you forward towards your goal. You may even run for quite a while, but eventually, fatigue begins to set in. Often times, you just mentally regroup, perhaps even stopping for a water break. On again you run.
And then it hits. That point where you just don’t think you can go on any more. Muscles throbbing & breath escaping you, the road ahead somehow seems to grow longer & steeper before your very eyes. In your mind, you know that if you remain steadfast, pushing through the pain towards the finish line, that second wind will come & you’ll find the strength to make it through to the end. But you honestly don’t know if you have the strength to take another step, let alone another stride. Everything in you longs to give up as the strain of moving forward seems more than you can bear. Will this road ever end?

Such has been this past week. For whatever reason, this fourth week in Chapel Hill seemed to carry with it a heavy blow. Each day brought new concerns & setbacks to our boy’s progress in recovery, feeling much like one step forward & two steps back.

For several days, Isaac’s oxygen saturations fluxed to concerning lows. He also experienced increased volume & viscosity in his secretions. These conditions made breathing more difficult with Isaac often gagging on the mucus in his throat & lungs. Thus his ventilator settings needed to be adjusted to provide greater assistance to Isaac in breathing. This will most likely delay extubation further & possibly increase his need for the trach. This however is a catch-22 as future open-heart procedures could be affected by having the trach in place. So it’s now a matter of determining the lesser of two evils.

Increased fluid in his lungs, a low-grade fever yesterday, & the finding of bacteria from his ET tube culture indicate that Isaac has the early stages of pneumonia. Doctors have begun a 14-day treatment of Vancomycin & Zocin for this as cultures have confirmed the presence of staph in his lungs.

Following the Broviac operation, Isaac has not tolerated the breast milk feeds, causing him to go back on IV nutrition. He repeatedly spit up for a few days, a result of his stomach being unsettled & gagging on mucus that was caught between the ET tube & his throat. They have just turned his breast milk feeds back on tonight w/an ND tube now in place. This tube bypasses the stomach so that food can go directly into the digestive tract, thus avoiding the nausea spells. Once he shows consistent tolerance to the feeds, the tube will gradually be worked back towards the stomach. The tube may need to be reinserted by radiology under the assistance of fluoroscopy, as it seems to be coiling in his stomach & thus not passing into the bowel.

We discovered that Isaac has an ingeuinous hernia on Friday, which will most likely require a surgical repair. With more critical issues pressing right now, this will be put on the back burner until he nears discharge. So for now, we’ll just keep a vigilant watch to see if it worsens.

Over the past week, Isaac’s blood glucose levels have been unusually low. Several times, his TPM (IV nutrition) has been adjusted to compensate for this drop in sugars, but to no avail. The endocrinology team has closely followed this trend & are concerned that Issac may have hyperinsulinism, a condition where the pancreas exerts too much insulin. Diabetes is where the body has a surplus of glucose & not enough insulin. Hyperinsulinism is the inverse. Another possibility is the presence of insulinoma (an insulin-secreting mass) in Isaac’s pancreas. He will be taken down for an octreotide scan today to look for a mass.

Doctors are also concerned with Isaac’s kidneys as his BUN levels are elevated, indicating that his vessels are dehydrated. However, in spite of the administration of Lasix (a diuretic), Isaac is retaining an exorbitant amount of fluid in third space (tissues). So our boy is carrying a great deal of fluid & yet lacking what is needed in his vessels. Several of the medications he is currently on have renal effects, so doctors are working out a balancing act between them all to give Isaac what he needs right now to his heart & lungs without causing damage to his kidneys.

This road holds many twists & turns. Most recently, uphill in the pouring rain. We don’t know what lies just beyond the next bend. We don’t know how steep this hill may be nor the distance of our journey. But as our muscles strain for the next stride & breath seems just out of reach, we press on for love of our little boy & the knowledge that God has not forsaken us. Our hearts ache for home with sweet Isaac in our arms. God provides us strength for each day & we remain resolved to run on for our little boy as he continues to fight towards recovery. The occasional ray of light breaks through the clouds, reminding us of the glorious sun shining just beyond the grey. And so we continue on, waiting for the second wind to come.