Originally Posted on | November 24, 2008
We finished our conference with the medical staff this morning. After all the questions, discussions, and mystery of the last couple of months, we seem to have reached a place of (relative) clarity. The clarity comes from the fact that we have come down to choosing between two paths that bring John home to be with us. And we plan on informing the medical team of our decision tomorrow. While this will not be the end of the decision-making process for us, it is clearly the first significant decision we have had to make. The details of the decision and the paths are below.
To help us make this decision, our family is going to have an evening of meditation, prayer, and fasting, using two passages of Scripture to guide us:
James 1: 2-12 – Count it all joy, my brothers, when you meet trials of various kinds, 3 for you know that the testing of your faith produces steadfastness. 4 And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. 5 If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. 6 But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind. 7 For that person must not suppose that he will receive anything from the Lord; 8 he is a double-minded man, unstable in all his ways. 9 Let the lowly brother boast in his exaltation, 10 and the rich in his humiliation, because like a flower of the grass he will pass away. 11 For the sun rises with its scorching heat and withers the grass; its flower falls, and its beauty perishes. So also will the rich man fade away in the midst of his pursuits. 12 Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.
Ezra 8:21-36 – Then I proclaimed a fast there, at the river Ahava, that we might humble ourselves before our God, to seek from him a safe journey for ourselves, our children, and all our goods. 22 For I was ashamed to ask the king for a band of soldiers and horsemen to protect us against the enemy on our way, since we had told the king, “The hand of our God is for good on all who seek him, and the power of his wrath is against all who forsake him.” 23 So we fasted and implored our God for this, and he listened to our entreaty. … 31 Then we departed from the river Ahava on the twelfth day of the first month, to go to Jerusalem. The hand of our God was on us, and he delivered us from the hand of the enemy and from ambushes by the way. 32 We came to Jerusalem, and there we remained three days. … 35 At that time those who had come from captivity, the returned exiles, offered burnt offerings to the God of Israel…. 36 They also delivered the king’s commissions to the king’s satraps and to the governors of the province Beyond the River, and they aided the people and the house of God.
Fighting back my natural tendency, I won’t fill the next couple of pages with exposition of these passages. Instead, Kelly and I invite you to join with us in our evening of mediation, prayer, and fasting. These updates reach a lot of people, and we know that everyone has different ways in which they can join in with us on this—particularly on such short notice. So however you are led to or feel that you can join us, we will treasure your love and support for us this evening.
Here are the details on the decision we are facing.
Path 1 – Start the Ketogenic diet on Monday to address the intractable seizuresJohn is having, and get everything in place to bring him home in 2 to 3 weeks. We will then monitor him over the next few months, to see if we need to return to the hospital to deal with his reflux by undergoing the surgical procedures to treat it— a G-tube and Nissen fundoplication. Why we would do this: We would be dealing immediately with the underlying problem—seizures, getting our son home as quickly as possible, and possibly avoiding the complications of surgery.
Path 2 – Schedule John’s surgery for the a G-tube and Nissen fundoplication early next week, delay the start of the Ketogenic diet by about a week or so, and get everything in place to bring him home in 3 to 4 weeks. Why we would do this: We would be dealing upfront with the potential discomfort and respiratory damage/failure that significant reflux can cause, we wouldn’t have to interrupt John’s Ketogenic diet for the surgery later on, and would be reducing potential challenges of continued feeding on an NG tube at home.
There are risk with whatever path we choose. But I am not sure that the risks are any greater one way than the other. Also, there will be much need for preparation for bringing John home with us. So either way, we will be facing a busy and daunting new few weeks. But at the end of that time, we should have our little boy at home with us.
Of course, I have made such pronouncements before. But my sweet wife reminded me today that while I did say sometime back that John “would be home in 2 to 3 weeks, without a trach tube,” I didn’t say which 2 or 3 weeks, so it looks like my prediction may come true. I am truly blessed by Kelly, as we are truly blessed by all of those who are loving us during this time. Thank you.