Ever been in the midst of a situation and feel disoriented, forsaken or fearful? Sometimes all we need to do is take a step back and see God's love and sovereign will. I want to share with you that love and and will in Samuel's story...
Samuel's story begins before he was born (actually before the beginning of the world, but before he was born will suffice here!) My mom died in 2005 and about 6 weeks later, I discovered that I was pregnant with our fourth child. Three days before Christmas we went to our appointment and couldn't find a heartbeat. As you can imagine, I was heartbroken. Nine months later I miscarried baby #2. We prayed, and prayed. Did God not want us to have any more children? I was reading 1st Samuel and Samuel's barren mother, Hannah prayed, "For this child I prayed," (1 Samuel 1:27) and I felt her pain and loss. God answered her prayer and Samuel went on to serve God, anoint 2 kings, and became a powerful man of God. Her story inspired me and the Lord gave me hope through her trust and faith. God met me in my despair.
Samuel Aston Maynard was born on August 29, 2007.
Samuel was a chubby, happy baby. But as he grew, he was not motivated to crawl like other babies. Instead he was content to sit and wait for his brothers and sister to bring him what he desired. He didn't walk until almost 2 years old and didn't speak more than 20 words until age 3. He had sensory issues with water and food and had trouble with bowel movements. In fact, he was constantly constipated. We had in home therapy for him for speech and sensory but pulled the plug when the county wanted us to send him to a special day school for special needs kids at age 3. We don't regret that decision. God blessed us with wisdom.
Samuel gradually got better with his sensory issues, his vocabulary grew, but he was still constipated. Our doctor started him on the stool softener, Miralax early on and increased the dose over the years. We went to specialists who suspected physical developmental issues preventing him from "feeling" like he had to go poop. Every test came back normal. We've tried enemas, Magnesium Citrate, diet changes, bio-feedback, researched food allergies... all to no avail.
The end of May 2016, Samuel started acting really lethargic. He had never had a lot of energy but now he was napping several hours a day and picking at food. We again tried diet change and bowel cleanout. Nothing was working. We finally got in to see the doctor who ordered an x-ray and blood tests. His tests came back all over the board. His electrolytes were abnormal, he was severely anemic, dehydrated and bowel compacted. He was admitted to UC Davis that day. God is merciful!
They discovered that his kidneys were functioning at around 40%, he had 3 blood transfusions and was put on liquid diet and meds to clean him out. They suspected that because of his bowel compaction, his bladder was blocked and forced urine back up into his kidneys (called reflux). He spent 3 days in PICU. He was released after 2 weeks on meds for high blood pressure, iron replacement, calcium deficiency, chronic constipation, and bladder infection prevention. We also learned how to catheterize him to empty his bladder several times a day. God is our great physician.
12 days later, on a follow up appointment, his kidney function had again taken a dive, and he was readmitted for dehydration. He was urinating large amounts and his water was increased to keep from dehydrating.
They over-hydrated him one day which caused him to have a seizure. Usually after we would turn out the lights I would fall into a exhausted sleep, but that evening I laid awake staring at him in the dim shadows, praying for him. That's when he started convulsing. He made very little noise and had I been asleep, I probably wouldn't have awakened. Unbeknownst to me, a friend of a friend, felt compelled to stay awake that night and pray for Samuel. God was there!
Since then, his numbers continue to slide downhill. As of this post, his kidney function is at 25%. Dialysis is usually started between 10 - 15% but can start earlier if high blood pressure is a concern. He has a better success rate if he receives a kidney transplant before dialysis. God's will is perfect.
Our insurance kicked in the 1st of January but, we just found out, won't cover a transplant at UC Davis. But will cover it 100% at UC San Francisco. My mother had a kidney transplant there herself when I was Samuel's age and then 12 years later, had a heart and kidney transplant there. UCSF's new facility in only 2 years old but that is not the most amazing fact. The original doctor that admitted and diagnosed Samuel back in July 2016 to UC Davis had left there in August for where? UCSF! And Samuel will be seeing her as his doctor on the 19th of January. And this doctor saw his referral at UCSF and upgraded him to have a complete kidney transplant workup instead of a regular kidney disease referral. God has a plan and is working through the details! God is sovereign!
The Future
It will take, on average, 3 months to prepare Samuel and his donor for transplant. He is losing about 3 percentage points each month. Please pray for the Lord to sustain his kidneys until the transplant is ready to be performed.
The transplant is not the end but just the beginning. He will be on anti-rejection medication the rest of his life. This transplant will only last 10-20 years before he will need either another transplant or dialysis. Please pray for the Lord's grace and mercy on Samuel.
Please also pray for wisdom for the doctors, discernment for Skip and I, and peace and joy for our entire family in the midst of this trial.
Another verse that God blessed me with during my pregnancy with Samuel was Jeremiah 29:11, ""For I know the plans I have for you," declares the Lord. "Plans to prosper and not to harm you, plans to give you hope and a future."" That promise sees me through the hardest days and I will trust in Him. God is good!
