The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deuteronomy 31:8
As May rolled into June, Jodi and I passed another milestone. Six months. It had been six months since Jodi arranged my arrival at the NIH. Six months ago I was literally at death’s door, but through God’s grace, some amazing medical professionals, and the power of a praying army I was no longer a CGD patient, and my new German white blood cells were fighting back the infection that had robbed me of my mobility and threatened my life. We were on the downhill side of my time at the NIH and plans were beginning to be made for life moving forward.
As exciting as this was, there was so much that needed to be done, and so many questions that needed to be answered before we could even begin to think about bringing me home. Will I leave the NIH with my trach and feeding tube? What medicines will I need and how will I take them? Even though I had passed an initial swallow test, I had not yet been released to eat a full diet, and taking pills was something that seemed far off. Additionally, because of the level of my injury, there was a constant concern that my breathing could be compromised. We were told that if my mobility didn’t improve dramatically, I would require breathing treatments twice a day for the rest of my life to keep my airways clear. Each of these details and others would all dictate which rehab facilities would be able to meet my needs. We had selected three facilities and were in the process of getting approval from both insurance and the rehabs. It was a very tedious process that Jodi was navigating with grace and endurance.
In addition to rehab decisions, we were also having to make decisions about our home. Although it was incredibly discouraging, we had to deal with the reality that I would be coming home in a wheelchair, and our house was FAR from ADA compliant. If we wanted to stay in our current location, we would have to make adaptations to our living room, bathroom, kitchen, and ramps would have to be built to get a wheelchair in and out of the door. Given the enormous cost that this would incur, Jodi was faced with the decision to either move forward with the renovations, or move our family to a home that was more suited to our needs. As you can imagine, the weight of these decisions was enormous, and Jodi felt the full burden of them all.
Ultimately it was decided that we would move forward with the remodle and continue to live in our current home. Once the decision was made volunteers sprung into action. Our living room was cleared, and crews began demo and ramp construction. Knowing that I was only guaranteed 3-4 weeks of inpatient therapy time was of the essence.
From a medical standpoint my improvements began to come fast and furious as they prepared for my departure. The decision was made to remove the trach as I no longer needed heavy duty breathing support. Once it was removed, the healing process began immediately, with my new immune system springing to work. Another swallow test was scheduled and after passing, the entire menu was opened up and I was cleared to eat and drink whatever I wanted. I would still experience difficulty swallowing, and the medicines I was taking caused me to have such a dry mouth that chewing would be difficult for some time, but the road to recovery now had an on-ramp.
As the march toward day 100 began picking up speed we were approached by my transplant doctors. Because I had done so well, they were prepared to release me to a rehab facility at day 90, not day 100. This was fantastic news as it meant I was 10 days closer to being with my family again, but it also raised our anxiety levels. It made Jodi a bit more frantic as it meant that the renovations to our home would need to be fast tracked, and decisions regarding rehab would need to be finalized sooner than we had thought. It raised my anxiety for another reason. For 6 months the NIH had been my home. I had grown quite comfortable with our daily routine. My life at the NIH was far from perfect but it was predictable. The people there knew me and I knew them. The level of care that I had received was second to none, and I had no way of knowing what awaited me at my next stop.
My anxiety was through the roof. Yes, I was excited about the next step, but I still needed so much specialized care, and there was fear that I wouldn’t be able to get it at a rehab facility.
As Moses was nearing the end of his life, Joshua was tapped as the next leader of the Israelites. As exciting as this must have been, it must have been a bit nerve-racking time for Joshua. Moses’ legacy certainly would cast a massive shadow. Moses had negotiated the release of the Hebrews from Egypt. He had led the Israelites through the Red Sea and into the wilderness. He had interceded on behalf of the Jews and spoke with God face to face, receiving the law and taking them to the edge of the Promised Land. Now Joshua was going to have to take the reins and lead them in the conquest of the land that God had promised Abraham, Isaac, and Jacob. No doubt he was anxious about the future and his mind had to have been flooded with questions and fears. And then, Moses brings Joshua in front of the entire nation and encourages him with these words:
“Be strong and courageous, for you must go with this people into the land that the LORD swore to their ancestors to give them, and you must divide it among them as their inheritance. The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deut 31:7-8
The future was uncertain, but God had delivered me and my family this far, and because of His faithfulness we could be certain that He was going ahead of us to prepare the way. We only needed to be strong and courageous, trusting in Him to do what only He could do.
One final MRI showed that the only remaining infection in my spine was located in the form of a cyst near the C3-C4 vertebrae in the top of my neck. My physicians at the NIH reached out to my spinal surgeon at Vanderbilt to inquire about the possibility of another operation to clear out the remaining infection in the hopes of releasing pressure on my spinal cord and restoring some mobility. The initial response was that the surgery would not be possible. It meant that I likely would never regain all of my mobility. As discouraging as that was, God had defied the odds before and wowed medical professionals. We had no other recourse to pray that He would do it again.
Day 90 was fast approaching.
Jeremy Powell 