Thursday, September 1, 2005 - Today was a fairly mellow day.  Jacob did have some alert time, but overall it's still pretty much the same.  Nothing really to report today.

Overall Status: Good

Visitors: Laura & Karen, Keith

Dinner Provided By: The Victory Family

Friday, September 2, 2005 - It's official, Jacob has pneumonia.  Poor guy, if it's not one thing it's another.  The last 24-36 hours, Jacob has had in increase in myoclonis movements.  About 4:30pm today, I was holding him & all of a sudden he began a vicious cycle of seizures.  I could feel the progress of the seizures as they gained intensity.  After about 4-5 in a row within 10 minutes, I called Dr Jacob, the neonatologist, to the bedside & asked that Dr A. Johnson be called.

After the doc's collaborated about what to do, a blood gas was drawn to see what his carbon dioxide levels were...result: in the 80's (normal range is in the 40's).  Dr Jacob asked the respiration therapist (RT) to get them in the 60's...if you can't make it happen, come tell me.

RT made some changes to the ventilator settings & another gas was drawn an hour later...no change in the level...and seizures are still going.  After about 2 hours of pretty much non-stop seizures, they finally started to settle down & Jacob fell back asleep.

It's unclear; either the seizures are causing the respiratory issues or the respiratory issues are causing carbon dioxide levels to sky rocket which in turn triggers the seizures.

Dr A. Johnson will be in tomorrow for observation & will be hooking up another continuous EEG.

Overall Status: Good

Visitors: Nicole

Saturday, September 3, 2005 - Have I mentioned lately how tired I am?  I'm not sure how much more of this I can take...or how much more my family can take...or how much more I'm willing to let Jacob take.

It's Midnight right now & I'm really tired, however, I know many of you have been anxiously awaiting an update, so here is a short one until I can post more details tomorrow.

Jacob is still having seizures, although they appear to be better now that his carbon dioxide level has decreased.  In fact, his condition got better as the day went on, so it's almost certain now what's causing the seizures.

Dr A. Johnson stopped the Klonopin altogether today so that we will finally know how much it might be contributing to this mess.  The EEG is now running & will run for at least 24 hours.

Stay tuned for more information that I'll post tomorrow...

Monday, September 5, 2005

Visitors: Colleen, Grandma & Grandpa

Wednesday, September 7, 2005 - First let me apologize for not keeping you all updated, I'm sure many of you are very worried.  I'm so emotionally drained, it's taking all I have to keep my head above water.

The good news is, it appears the pneumonia is gone & since the Klonopin was re-added within the last couple days, the myoclonis has gotten better.  He has also been having a lot more awake time, but not as often as he should.

We had a care conference yesterday with two of Jacob's primary care nurses (Mary & Carol), Dr A. Johnson, Dr Kessler, Dr Parrish, spiritual care, social worker, case manager, and us.  It was very emotional.  Nothing was really said that none of us didn't already know, however, it was a time for us to lay it all out with everyone there; hash it out so to speak.  We have devised a plan that goes as follows:

1) Jake has started a 24 hour steroid treatment as of today.  This will help clear up any swelling in his lungs and/or airway to help with the extubation process.

2) They also started another drug that will help dry up some of his secretions so they aren't as bad.  Hopefully this will make it easier for him to maintain his own secretions & not fill up his lungs with them.

3) Extubation will be attempted late Thursday or early Friday.  If he immediately fails, reintubation will occur.  At this point it will be clear to Kevin & I that he will never be able to breathe effectively on his own and we'll need to do some final soul searching.

4) If he can maintain, Dr A. Johnson will be doing what's called a 'sleep study' most likely on Saturday.  This will help in determining if Jacob has Hypoventilation Syndrome, which is essentially another way of proving that he won't be able to breathe on his own.

5) If, over time, Jacob progressively gets worse, we will not reintubate.

6) Continue with any other genetic testing, if not for Jacob, for the sake of Amanda's children and others not within our family.

This is weighing very heavy on our shoulders.  I can't stand the thought of looking into my sweet son's eyes & not giving him the necessary means to help him breathe, but at the same time, I know that quantity of life is not as important as quality of life.

With Brianna, she made the decision for us.  She got a brain hemorrhage & never woke up.  Jake's not in that position, however, I know in my heart he is suffering & will continue to do so as long as we medically keep him going.  Is that really fair to do?

As I watch the ventilator draw a 'loop' of the machine breath vs. Jacob's, it's clear to me how he's going to handle being off it; I'm just hoping for that miracle & that he proves us all wrong.

Please keep us in your thoughts while we hit this head on.  It's the second hardest thing we'll ever have to do in our life; the first being when we did it with Brianna.

All I ask is that God give us clear guidance on what the right thing to do truly is.

Visitors: Grandma & Grandpa, Kerry

Dinner Provided By: Valentine Family