Thursday, August 25, 2005 -   I've said it once, and I'll say it again...what a difference a day makes!  Jacob is doing MUCH better!  Although he's still having 90-100 seizures a day, he is much calmer & not twitching near as much.  How you might ask?  The seizures he is having, are brief ones that don't always show externally.  It's so nice to see him relaxed & sleeping soundly versus always moving around & never looking like he's in a good sleep.

They have also started to wean him off the ventilator!!  His lungs x-ray was amazingly different today.  Both lungs were clearly visible & much more expanded!  By the end of today, he was getting 20 breaths per minute, down from 45; a rate of 20 for air pressure, down from 29; & 30% oxygen, down from 100%.

This is a HUGE difference...so much so, they are hoping to try extubating him tomorrow!  Thank God!!  It's thought to believe that he may have had an infection & since he was on antibiotics for surgery, it's also helped clear up the infection.  I don't care what the reason...I'm just happy the near future looks a little brighter.

He is also no longer on the morphine or the two antibiotics, and they have removed the tube in his nose that was used for drainage since the surgery.

Go Jacob Go!  Dr A. Johnson is much happier with Jacob's status.  Again, he's still having a lot of seizures, but they are much more controlled in a lot of ways & not a life or death threat.

Overall Status: Much Better

Visitors: Cindy & Linda, Grandma & Grandpa

Dinner Provided By: The Curtis Family

Friday, August 26, 2005 - Did I mention how much a difference a day makes?  Oh yeah...yesterday I did!  haha  Well today is more good news!  God is awesome!  The previous 24 hours of EEG results are in...only 18 seizures!  We are working our way back down again!  Wahoo!!!

So what caused all this mess in the first place then?  Here's our best guess...and a logical one at that:

1) Jacob is born & doesn't expand his lungs well, so as time goes by, C02 is getting in his system & condition is worsening.
2) He aspirates, which causes fluid to get into his lungs, causing more respiratory problems.
3) The Klonopin can cause more respiratory distress.
4) Lungs get so bad & lack of oxygen can cause anybody's system to react, with Jacob it resulted in massive amounts of seizures.
5) He gets put on a respirator to help him breathe which also helps to clear out his lungs.
6) He's on antibiotics for the surgery which is also helping to clear out the infection he has in his lungs.
7) Jacob's seizures get less & less as his body recovers from being 'sick'.

Does that make as much sense to you as it does me?!  So here's the plan for the next several days:

1) Ativan was stopped tonight & oral Klonopin was put in it's place via the G-Tube.
2) Tomorrow, Depakote-IV will be stopped & begun via G-Tube.
3) Tomorrow, Breast milk should be started again in his new G-Tube, gradually increasing feeds as he tolerates (just like when he was first born).
4) Continue with EEG monitoring while the oral meds get back in his system to ensure nothing crazy is happening.
5) Continue to monitor his lung x-rays to verify the lungs are getting better.
6) Once we know he is stable with meds & feedings, as well as noticeably clearer lungs, we will attempt to extubate.

I think that covers just about everything that I discussed with Dr A. Johnson & the neonatologist tonight.  We are all VERY happy to see Jacob going in the right direction, course we still don't have any idea what this means long term, we just have to take it day by day.

There is still a big question as to whether or not he will be able to breathe on his own effectively, only time will tell, but at least this time, we'll know that checking his C02 levels will be very important to make sure we don't end up where we were earlier this week.

He's also still not showing any good awake periods, however, as he starts getting off the Ativan, hopefully we'll start to see a change with that as well.

Overall Status: Good Day

Visitors: None

Dinner Provided By: The Stratton's

Saturday, August 27, 2005 - More good news!  Jacob was awake for about 25% of the time during the day nurses shift!  Unfortunately, I wasn't there for any of it as I came down with some sort of crud during the night.  Timing was terrible, as Kevin is on the slope right now.  Thankfully, sister-in-law came to take Amanda so I could get some much needed rest to try & kick this crud to the curb.

The nurse felt Jacob had even less twitching/seizures today & she definitely noticed moments when he was completely still & in a nice deep sleep.  As she would do his cares, he would wake up & twitch more, but not near as much as he was.

Dr Jolley gave the order for Jacob to receive 4 - 20 cc feedings of Pedialite this morning.  As of this evening, Jacob was tolerating the meds & feedings just fine & will start breast milk again tonight.

Dr A. Johnson did stop by about 7pm and watched the EEG for about 20 minutes.  The nurse reported to me today that he was very happy with what he saw during that time.

Overall Status: Great Day

Visitors: None

Sunday, August 28, 2005 - Happy one month birthday little man!  I can't believe a month has gone by already.  I was able to drag myself to see Jacob today for about 3 hours.  He looks so good!!  He's a little swollen so they may give him another dose of lacex to help with that.  I witnessed complete calmness, eyes open & looking around, some twitches & maybe one true seizure while I was there today.  I was there for his 2:00 feeding and as milk was going in his belly, I noticed him sucking his ventilator tube and he did it consistently!  Could this be a sign of eating the right way someday?!  One can only hope!  He is also up to 40 cc's of breast milk every 3 hours.

Dr Parrish stopped in to visit with me.  She is going to ask Dr Roderick Smith to come down & look at Jacob tomorrow.  He is another Pediatric Neurologist & although Dr A. Johnson has been consulting with him, she thinks it would be a good idea for him to come observe & read his charts, as he would be looking at things from a different angle & fresh mind, just in case we might be missing something.

They removed his Artery IV line today, this was used for a constant blood pressure reading, as well as a place to draw blood for lab work without having to poke him all the time.  They also removed the IV that was in his foot.  He has one IV left & if his feedings go well, they will remove it in the next day or so.

He is down to 21% oxygen, which is what we breathe -- so he's essentially on 'room air'!!  GO Jacob!  The breaths per minute are still at 20, however they have decreased the pressure to 17.

When days are good, there isn't much to report!  Thanks again to all of you that continue to keep us in your thoughts & prayers...the power of prayer is magnificent!

Overall Status: Great Day!

Visitors: Nonie & Papa

Dinner Provided By: Sarah Hoffman

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

Tuesday, August 30, 2005 - Today felt like a little set back compared to yesterday.  Dr A. Johnson was in, and at the time he was there things appeared to be ok, however, as the day progressed Jacob seemed to be a bit more jittery & his muscle tone was a lot tighter over yesterday.  He had ordered the Klonopin be decreased again, but after I informed Dr Kessler about what I had seen, he called Dr A. Johnson & they agreed to leave the medication as is for another day or so.

Kevin finally made it back from the slope after being gone for 5 days.  I was hoping he was going to see Jacob alert & relaxed, but no go.  In fact, Jacob didn't have any alert time today.  Ugggg

Overall Status: Good Day

Visitors: None

Dinner Provided By: The Emery's

Wednesday, August 31, 2005 - When I arrived this morning, Jacob was on more oxygen & the nurse informed me a sample of his secretions had been sent to the lab to test for infection.  Jacob's secretions have gotten worse over the last couple days & he's been having a harder time breathing.  The culture came back positive, he's got an infection, which isn't uncommon for somebody on a ventilator.  So guess what?  Jake got another IV put in today for the antibiotics & they also sent a blood culture to make sure the infection isn't in his blood stream.  It will be a couple days before we know the answer to that.

What does this mean?  There will be no attempt of extubation while the infection is there, which will most likely be 5-7 days.  Uggggg

Dr Roderick Smith came for the consult visit with us today.  He talked with us for a while & then reviewed Jacob's ever growing chart.  When he returned, he pretty much said the same thing that all the others have...it's a mystery.  He does have a few ideas for some additional testing that can be done.  He's going to talk with Dr A. Johnson & compile a list.

We have scheduled a family care conference for Friday afternoon where both pediatric neurologists will be there.  I'm not sure what exactly will come out of the meeting, but I do know it's mainly to get everybody on the same page as well as ask Kevin & I some tough questions that the doctor's need answers for in order to best care for Jacob if things turn for the worse.

Jacob did have a better day today in regards to jitters/twitching.  He was pretty relaxed all day & his muscle tone was much better.  Again, he showed no awake times.  Maybe tomorrow I'll see those pretty eyes again.

Overall Status: Good

Visitors: Grandma & Grandpa