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

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