Tuesday, August 16, 2005

Today was a rough day & I'm emotionally drained...so I'm going to bed. To those of you that check this before tomorrow morning, say some strong united prayers & I'll get the update posted in the morning. Until then, "May God be with our lil' man Jacob."

The next morning - I woke up this morning with a headache since I cried myself to sleep last night. I can't even begin to try & explain how we are feeling while going through all this again.

The results of the EEG are back, 54 seizures in 24 hours. Needless to say, we were stunned. Dr A. Johnson doesn't understand why the meds were working & now they aren't. I know that answer; because whatever this syndrome is, it's how it works. Seizures look to be under control on the surface, but the brain is still sending them off. It's the same way Brianna was. This syndrome worsens as time goes by rather then controlled or better.

Colleen was there while both Dr A. Johnson & Dr Parrish (neonatologist on duty), which I was glad for. It was a blow I wouldn't have wanted to take by myself, even though I held my head up during the conversation. As Dr A. Johnson continued to carry on about taking a more aggressive approach, trying new medications, continuing to run the tests that have been mentioned the last few days, etc.; I couldn't help but think out loud.

At what point do we decide enough is enough? How long do we allow Jacob to be a 'research patient'. Will we ever really find an answer or are we on paths that will lead to dead ends? Are the meds truly helping him or making him worse? Are we just prolonging the inevitable?

The doctors mainly just sat & listened. Dr Parrish was understanding where I was going with all the questions, however, Dr A. Johnson is still feeling like we need to keep trying, which I agree with...for now.

I brought up the possibility of brain surgery to remove the areas where the seizures are being generated. Due to the location of the seizures, which are in important areas of the brain, surgery isn't an option.

Once Kevin arrived after work, I asked that Dr Parrish come speak to both of us. I guess I just felt like I had more that I had to get off my chest & I didn't think it was fair Kevin wasn't there for the earlier conversation.

I started by crying, couldn't seem to say the words that were on my heart. Finally I just said...I don't know where to turn. I don't know what's right for Jacob & I just want to make sure everybody is on the same page. After the last conversation, I wasn't so sure that was the case.

She listened for a while before saying anything. Kevin asked if Jacob was considered critically ill; with Brianna, nobody ever came out & said it, Kevin read it in one of the daily progress notes written by a Dr in Seattle, so Kevin was just ready to get to the point. The answer, yes he is. What makes him critically ill is his lack of eating, lack of the ability to protect his airway, and his shallow breathing.

When asked what patients with advanced neurological problems, like Jacob, generally pass away of, her answer was breathing problems. Currently, the amount of oxygen Jacob is requiring, as well as the way he is receiving it, is not safe for a home environment. If he doesn't start breathing better, intubation is likely in his future, and if we want him home, that would mean a tracheotomy. With that said, I'm sure you now understand what we are really dealing with.

The current plan is to continue to treat Jacob's seizures by trying more aggressive medications that weren't tried on Brianna, while continuing to wait for test results that have been sent out. Dr Parrish also stated; because his brain is so busy triggering seizures, it doesn't have the time or energy to send off the signals that normally would happen, i.e. learning to eat or taking deeper breaths. So she is thinking if we can get the seizures controlled, we might start seeing some progress.

They doubled the amount of Keppra again last night. Another EEG was ordered for today to see what the increase in Keppra did. The spinal tap was done yesterday afternoon & is being sent off to a lab in Atlanta this morning & the EMG is being done between 9am-10am this morning.

I also asked Dr Parrish if the pattern for the next several days would be, increase/change the medication one day & EEG the next day, and if so, couldn't we just leave the electrode's attached & save him from removing all that tape every other day? She's finding out.

Jacob was moved to a private parent/baby room last night. Since he is very sensitive to stimulation, they felt it best to move him where a door can be closed & it's quieter. This also allows Kevin & I some privacy & a room to relax in that joins Jacob's room.

With all that said, I also informed the Dr's that as long as they are messing with medications, I don't want Jacob at home. Without knowing how he will react to them, I don't want to find myself in a life/death situation without the necessities to help him at home, nor do I want to send him home prematurely just to 'get him home', only to end up back in the hospital again like we did with Brianna.

So, it looks like he'll be there for quite a while longer. We are expecting the original test results back from Wisconsin by the end of the week, hopefully. Please just let the answers be provided to us. At least then we'll know what we're treating & how to best treat it. That's better then shooting in the dark hoping to find the target.

Overall Status: So-So
Visitors: Grandma & Grandpa, Colleen
Dinner Provided By: The Merriner's

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