God's Sustaining Word

On September 29th Mike and I rushed Josiah to the ER because he wasn't breathing right, was very floppy and lethargic and hadn't nursed in 18 hours. From the ER we were transported by ambulance to Sutter Memorial in Sac. with only an I.V. for re-hydration. We had chest and abdominal x-rays, stool and urine samples taken, throat culture, blood cultures and fluids through the I.V. but "went to sleep" that night with no answers.

"'For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."' Jeremiah 29:11-13

Sunday morning the Intensivist following Josiah in the PICU came to us and stated he thought it was Infantal Botulism. We had never heard of such a disease. It is extremely rare - only 80 cases in the US a year. It affects children under the age of 2 and is contracted from bacterial spores in dirt that has been stirred up. The spores enter the body and release neurotoxins which cause muscle paralysis. The main symptoms were exactly what Josiah was experiencing: drooping eyelids, difficulty swallowing, lethargic, constipation, poor feeding, weak cry and poor muscle tone. The reason he wasn't 'breathing right' was because his throat muscles were becoming paralysized. He began to get very swollen and barely open his eyes to see us. His cry was so weak and unfamiliar. We watched as our son gradually became trapped inside this body that was shutting down.

"May the Lord answer you when you are in distress; may the name of the God of Jacob protect you. May he send you help from the sanctuary and grant you support from Zion. May he remember all your sacrifices and accept your burnt offerings. May he give you the desire of your heart and make all your plans succeed. We will shout for joy when you are victorious and will lift up our banners in the name of our God. May the Lord grant all your requests. Now I know that the Lord saves his anointed: he answers him from his holy heaven with the saving power of his right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God. They are brought to their knees and fall, but we rise up and stand firm. O Lord, save the king! Answer us when we call." Psalm 20

It took all day for the hospital to make arrangements for Josiah's medicine. It had to be paid for up front by the hospital (ridiulously expensive), be ordered, be flown in from L.A., driven to the hospital and administered under strick supervision. This miracle med is called the Baby B.I.G. (Botulism Immunoglobulin) and takes 24-48 hours to begin to reverse the effects. By the way, this med is only 10 years old. Sutter Memorial Hospital was actually the hospital to partake in the first study of the effects of this drug. God put us in the right place. It took about 36 hours for us to see any changes happening - those were the LONGEST 36 hours of our lives. Sustained only by God's Word and prayers being lifted by countless prayer warriors, we watched and waited.

Slowly we saw Josiah returning to us. His eyes opened a bit more. He lifted his hands to our faces. When we talked to him we got very close to his face and talked about Brianne and Maicee...and home...and our doggy. That day we got a faint but distinct smile. Previously his eyes and mouth drooped and he had no expression. That evening, Mike was wearing an orange hat that Josiah has always loved and his eyes caught sight of that hat and he reached out for it. It made us both cry. His progress was slow but steady enough to know that his body was indeed reacting to the Baby B.I.G. We praised God.

After about 8 days and much movement later, our goals became 'simplier' like coming off the oxygen and feeding tube. The mouth and throat muscles are the last to respond so nursing was not an option. Josiah was 'awake' enough now to notice I was not nursing him and he protested alot, especially at night. This was so emotional and against every mommy fiber in my body to refuse his protests. Day 10 proved to be the most joyeous because the speech pathologist decided that Josiah might be ready to handle the suck, swallow, breath sequence needed to nurse...and because he refused to try it from a bottle (foreign to him) she allowed me to nurse. I cried some more.

Tuesday, Oct. 9, after his previously scheduled ultrasound and VCUG for his UTI's (not related to Botulism) we were discharged and headed home. This was a journey of faith. When I had no words left to pray I asked my brother, who has experienced this heart-wrenching indescribable deep himself, how to pray. He said pray for mercy. And before he left the room he gently reminded me that the character of God never changes.

"I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live. The cords of death entangled me, and the anguish of the grave came upon me; I was overcome by trouble and sorrow. Then I called on the name of the Lord: 'O Lord, save me!' The Lord is gracious and righteous; our God is full of compassion. The Lord protects the simplehearted; when I was in great need, he saved me. Be at rest once more, O my soul, for the Lord has been good to you." Psalm 116:1-7

These pictures are only to show the progession starting from Tuesday about 36 hours after the med. We give God the glory. Thanks for reading this and celebrating Josiah's life with us. We trust God has great plans for him.