Saturday, April 25, 2009


My boy with his new paci and his own blankie. It's so extra special to be able to use stuff of his own. I think I'm gonna go get a really bright to lay on his crib underneath him, make it lively in here.
We've been here for just a little while this morning. We had a saturday morning family breakfast and got up here a little later than usual.  When I called before breakfast, his nurse assured me he was doing great. She had him last week and couldn't believe the improvement. In her words, "He is the definition of "good to go." She couldn't believe how awake and comfortable he was. This is so encouraging.  Now, the trick is not to set my hope on that NOR to fear the future. Very tricky.

His chylo output continues to go down, but continues to need to go down a lot more. Please keep praying. Remember, he was scheduled to go into the OR on Friday for a duct ligation. And I am quoting two different doctors. One from this morning, after looking at his decreased output over the last few days,"Thank God for fungus." And the other I quoted before, "It's a judgement call (referring to if it is safer to take him to the OR or give him time to fight it) and someone upstairs is telling us we didn't quite make the right judgement call." Doctors acknowledging God's sovereign control over the spread of yeast in the body, hmmmmm. If their acknowledging it, I sure better. It's important for me to remember God's obviously sovereign hand when there are outcomes I don't like, also.

His most recent cultures came back still showing yeast, so the infectious disease folks want to treat him with another anti-fungal on top of the fluconazole. Pray for protection for his body. Of course, every thing they put in his body has side effects, and he's on a LOT of stuff. They are also going to give him a new drug for the  blood clot he has in his leg. It was resistant to the drug they've been giving him, "impressive," they say. So, we can pray that will take effect safely.

On our way in this morning, we spent some time talking to Reed's parents. Please be on your knees for this sweet family. They are being faced with a decision no parent should ever have to make. Since ex-tubating Reed yesterday, they already had to resuscitate him once. It looks like they are going to have to decide wether to let their sick little one go home with Jesus or keep their sweet little one here with them a little longer, knowing he may suffer. His illness does not hold a hopeful prognosis, but they want him with them as long as possible. At the same time, they do not want to withhold from him the possibility to dance with Jesus, free from sickness. Please pray for their family as they make this impossible decision. Pray for God's peace to pass all understanding. Pray that God will show us how to best minister to them. 

Thank you for waging wars on your knees. 

Ecc 7:14
"When times are good, be happy;
but when times are bad, consider:
God has made the one
 as well as the other.
Therefore, a man cannot discover
anything about his future."
A picture of all of Shep's pumps and meds. You can't really tell, but I think he  has like 15 different things
Good days at the RMH


Anonymous said...

Praising God for a good update for today, and continuing to ask him for grace as you guys deal with each part of this journey. I will definitely be keeping Reed's family in my prayers as they work through this decision and the emotions that come along with it.
Love you!

Anonymous said...

We are continuing to pray for you all and we are praying for Reed and his family.
The Vahala Family