Our Temporary Home at Vanderbilt Children's Hospital

It has been awhile since I have been able to post.

Tim and I have received phone calls and emails requesting updates about Dustin's condition. It's been hard for us to provide all of those updates (although Tim has been great about providing a few updates to the list of email recipients on his i-phone) since we are spending a significant amount of time talking to various physicians regarding Dustin's condition. Today, I was finally able to obtain internet connection and so, I hope to provide more frequent updates.

Last Tuesday, May 5th, Dustin had the surgery to remove the CCAM in the upper lobe of Dustin's right lung. Dustin did well during the surgery and post-operatively, he looked great and was recovering nicely. By Thursday, Dustin had progressed to eating solid foods (albeit not his normal full course meal), was reaching for Tim and me to hold him and was beginning to look much more like the pre-operative Dustin. At that point, we thought that we were on the home stretch--heading for a Friday (or Monday, at the latest) discharge.

On Friday, Dustin began exhibiting signs of pain and discomfort. He had a fever throughout the day, at times at 102 degrees. His heart rate also began to increase. I was able to identify to the nurses that Dustin was dehydrated. So, the nurses were able to get the physicians to order a bolus of fluids. Still, Dustin continued to exhibit his discomfort and potential pain throughout the day. Since the anesthesiologists were concerned about Dustin's continued fevers and high heart rate perhaps being symptoms of spinal meningitis, they pulled Dustin's epidural out in the middle of the night on Friday. Poor Dustin was crying/moaning for hours and hours on Friday--showing clear signs that something was wrong.

On Saturday morning/early afternoon, a general pediatrician drew some samples in order to perform laboratory analysis to determine if there was a source of infection causing the fevers and high heart rate.

Saturday night, the monitors that measured Dustin's heart rate, blood pressure and oxygen saturation level were going absolutely berserk. I continually requested assistance from the nursing staff to fix the problem. They made attempt after attempt to fix the monitors. In the meantime, Dustin's feet, legs and hands were growing terribly cold. I spent most of the night trying to figure out the monitors, move the oxygen blower around Dustin's crib due to my alarming fear that Dustin was not getting enough oxygen and obtaining nursing attention. Dustin's feet and hands began to turn purple.

I don't recall ever being so fearful that I was going to loose someone that I love. I know that I will never forget the beeping sounds of the monitors.

On Sunday morning when the charge nurse came by to check on Dustin, she saw his purple (mottled) feet and hands and immediately called the rapid response team. That's when Dustin was moved to the Pediatric Critical Care Unit. There, Dustin was put on a ventilator to provide breathing support to help take the burden off of his heart. The physicians told us that Dustin was septic. To be honest, I was fearful that my son would not live.

Once in the Pediatric ICU, Dustin was provided broad spectrum antibiotics to attempt to combat the infection that had invaded his tiny, precious body. He was also given several medications to assist his heart. Multiple blood transfusions were administered to assist his low blood gas levels, including platelets and blood. He has also been given lots of fluid to increase hydration and urinary output.

Today, Dustin's heart rate is consistently lower than what he experienced over the weekend, he has been weaned from all of the heart drips and is doing C-PAP trials to determine if the ventilator may be removed (we're hoping for tomorrow). Dustin continues to be febrile, which is likely a sign that Dustin continues to fight an infection. Infectious Disease has been consulted and has modified the antibiotics in hope that the more focused medication will be more effective at treating the infection. Overall, the physicians all believe that Dustin has turned a corner and is showing great progress. One physician indicated that, "he should be a new man by this weekend".

In terms of the clinical aspects of this experience, there is much more to tell. One day, I may fill in all of the details. For today (and for everyday), the most important aspect is Dustin and his road to healing.

On Sunday, I realized that my son is provided to me on loan from God. He is first and foremost the son of God. That day, I released him to God--knowing that He alone is the author and creator of life. I cannot begin to understand how precious babies can become so infected and so sick and the reasons why. I cannot begin to describe how seeing my baby so sick has broke my heart into thousands of pieces. For now, all I can understand is that Christ is completely in control. God's plans for Dustin may not be the same as my own. "My thoughts are not your thoughts, Nor are your ways My ways,” says the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts." Isaiah 55:8.

We covet all of your prayers and continued support through this time. Please continue to pray that Dustin's condition improves, that Dustin does not experience any negative impact from all of his treatments and condition while at Vanderbilt and for strength, peace and courage for Tim and me throughout this time. The photos below include one of Dustin and me pre-operation, one of Dustin immediately post-op, and one of Dustin in his room on the pediatric floor. I have not included a photo of Dustin in the ICU.