Monday, August 29, 2005

I'm so excited!! I couldn't seem to drive home fast enough to post all the great things today brought us. Praise God for the miracles he is doing!! 
Where do I begin?! The EEG was removed this morning, but he still had the wires attached when I arrived so I still couldn't hold him. Since the monitoring equipment was now gone, I had plenty of room to setup camp right next to his bed, at his level, & scrapbook! So that's exactly what I did!

Did I mention he was awake when I got there?! Not only that, he was awake for 4 1/2 SOLID hours!! Eyes open & focusing on subjects for the longest stretch ever, and since his head was facing my direction, I was his main target! How sweet it was to look over with him just inches away & see him looking at me!
Around 5:00 the EEG technician arrived to tell us all the wires could be removed! Yippee!! Let me tell you what; after being hooked up to that thing for several days with a cap on him...he was starting to ssstttiiinnnkkk!! I couldn't wait to massage his little head & get all that crap out of it! Course, since he was hooked up for so long, he's got more scabs on his poor head...dang it! Good thing their skin heals quickly.

So I washed his head real good & gave the rest of him a bit of a sponge bath...then...I told the nurses I wasn't going to take no for an answer...get me my comfy chair & let me HOLD MY BOY! And that's just what I did! Ohhhh...that felt SOOO good & I can tell he totally loved it too.

Oh my gosh! I forgot to tell you some of the best news yet!! (see didn't I say there was a lot of great things?!) Jacob was virtually twitch & seizure FREE!!! He was barely having any myoclonis movements & I didn't witness ANY seizures today! He was loose & relaxed & didn't tense up to rock hard when he was moved around. He also startled as a normal baby would TWICE! I happened to drop my trimmer on the floor & it about scared the ba-jesus out of him! Arms & legs went flaring & eyes got wide looking around wondering what the heck that was!

He's also up to full feedings, 60 cc's every 3 hours, & the IV has been removed!
Dr A. Johnson arrived just after I got him in my arms to tell me the results of the last 24 hour EEG study -- only 2 seizures and they were so minor he almost missed them while reviewing! They were about 40 seconds...down from 4 minutes! wahoo!!

Then we talked a bit about what his future might be like. He honestly can't tell me. He gave me some percentages; kids that have uncontrollable seizures might have a devastating outcome, no real quality of life, etc....Jacob's seizures are under control. He can't say that he'll be normal either since he's had a rough start & does appear to have some developmental delays...doesn't suck/swallow well etc.

He also said that the entire NICU staff is feeling the same way he is. In some ways this is encouraging, maybe the future might not be so bad after all; in other ways it's frustrating not having a clue.

Dr Lou spoke with Dr A. Johnson before he came to visit me about getting his opinion on having Dr Roderick Smith come take a look at Jacob. They wanted to get Dr A. Johnson's opinion first, making sure they weren't stepping on any toes. Dr A. Johnson thought it would be a good idea, so I suspect I'll be seeing him sometime tomorrow, provided his schedule allows for it.

Finally, we talked about his respiratory issues. Currently the ventilator settings are set low enough where extubation could be attempted, the problem is they aren't sure Jacob will be able to breathe effectively or if he will be able to handle his secretions. Since Klonopin can cause respiratory issues as well as increased secretions, we are going to try & wean him off the Klonopin & see if the Depakote will handle the seizures by itself; which as long as we are clinically not seeing a decrease in Jacob's condition, he should be weaned by the end of the week. It's my understanding, once he's weaned & condition is still stable, extubation will be attempted.
SPECIFIC PRAYER REQUEST: I come to you today, Father, & ask that Jacob's seizures remain under control while he is being weaned from the Klonopin, that the secretions diminish so much that he's able to handle them on his own & that once the respirator is removed, he is able to breathe effectively over time. Amen.

This is the last hurdle to overcome before Jacob can come home!

Overall Status: GREAT Day!
Growth Stats:
Weight: 7 lbs 13 oz

Visitors: Grandma & Grandpa
Dinner Provided By: Noni & Papa

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