Sunday

Hey everyone,

Today went better than yesterday.  Greg got some sleep last night, and though he did wake up with a bad headache and also vomit at one point, in general the pain medications are keeping things better under control.  Since it is the weekend, not a lot happened today but his doctors did stop by.  Dr. May thinks that this is probably aseptic meningitis from the IVIG but he doesn't want to do a spinal tap to diagnose it since they can't treat it even if they do get a positive diagnosis (and there are lots of risks involved with a spinal tap).  The neurologist on the other hand thinks a spinal tap could be a good idea, though he doesn't think that this is bacterial meningitis and acknowledges that they couldn't treat it if they did have a positive diagnosis - but he is looking for answers.  I'm sure Dr. May, being on the transplant team, will have much more sway than the neurologist.

The neurologist's nurse practitioner told us that it is probably not a migraine, based on the fact that Greg hasn't had migraines in the past and it would be odd for him to start having them in this manner. 

The doctors are continuing the steroid that they put him on yesterday and have also added another medication that is typically used for seizures, but can have good results for any brain-related issues.  He'll be on the steroid and the new medication (by IV) for a few days).  They also started him on IV lasix to pull some of the water off of him because he is swelling and retaining water.

Tomorrow, he will probably get a chest x-ray because they are concerned about his low blood-oxygen levels (though it was 89% tonight, which is the highest it's been so far).  Hopefully we'll start seeing the effect of some of these medications tomorrow and his headaches will lessen in severity. 

I did find out that they are trying to wean him off of the Dilauded (which is the only thing that has controlled his headaches so far) because it is very strong and highly addictive.  Please pray that they would be wise in deciding how to balance weaning him off it it with controlling his pain.  The hope is that the steroid and IV med will begin to kick in and control the pain instead.

He has slept a lot today (which is great!) thanks in part to the bendaryl knocking him out.  He did get a shower today which was great!  He felt pretty awful during it, but was really glad to be clean.  He tried eating a bite of a grilled cheese sandwich earlier, but it made him nauseous.  Before I go home tonight I'm hoping to at least get a cracker in him, but we'll see.  He has no interest in food and gets nauseous easily.

So.. that's a lot of details, but I know that many of you like to pray for specifics, and I appreciate that! 

I'm pretty exhausted, but I'm hanging in there - and trying to nap when he naps.

 I spent most of today finishing reading "When God Weeps" by Joni Eareckson Tada and Steven Estes, and I just have to take a moment to recommend it to you.  It is by far THE BEST book on suffering I've read (closely followed by Affliction by Edith Schaeffer) and I can't recommend it more highly.  You may be familiar with Joni Eareckson Tada's story - she became a quadriplegic as a teenager due to a diving accident and has experienced immense suffering since then.  She has asked God the hard questions and walked through dark times - and this books is full of incredible truth that she has learned the hard way.  There's something about learning about suffering from someone who has really suffered that makes it all so much easier to swallow.

Anyway... enough of my book recommendation.  I'll let you know how tomorrow goes.  Thank you for praying for Greg.  He was really encouraged when I told him how many people are rallying around him in prayer.

Love,
Elise