Monday, August 8, 2005

Jacob had another good day today. His muscle tone was more relaxed over yesterday. He was stretching out his legs on his own & didn't give me much resistance when I stretched his arms over his head. His oxygen levels were very good with no dips & they may drop him down to .2 liters this evening. His feeds have increased again to 55 cc's every 3 hours. His umbilical cord is about ready to fall off too! Dr A. Johnson, the pediatric neurologist, stopped by today to ensure that the lab work was done for the 2 genetic tests, as well as to check in with us to see how we felt Jacob was doing.

After chatting with him a bit, it was decided to increase the Klonopin a bit higher then the original dose. The goal is to get the myoclonic movements a little more under control, without compromising his breathing ability. Dr A. Johnson feels that he may be having myoclonic movements in his lip/cheek muscles, which could be prohibiting him from wanting to suck/swallow.

The nurses have begun to nipple feed him with a bottle to see what he does with it. The first try was during the 2:00 feeding. Although he was very aware that something was there, he didn't do much with it. He moved his tongue around, made a very weak suck attempt & some funny faces. The nurse did consider it as having an interest though, which is very promising. During this attempt, he was stimulated quite a bit & his lips began to quiver. I wondered if it may be a seizure, but when we pressed our fingers on his chin, the movements stopped. Had it been a seizure, you wouldn't have been able to stop it. This proves the theory of the reason why he may be lacking in the suck/swallow category.

The next several days may appear to be a bit of a setback with the increase in medication. The hope is that after the medication levels out, he will be back to waking up, have less or no myoclonic jerks & continue to show signs of eating. Depending on how well he tolerates the increase in medication, he may need to be intubated to get him 'over the hump'. Time will tell.

Both the Dr & I agreed that it was much better to try out this increase with him in the hospital then at home since he has 24/7 nursing staff. We also decided we wouldn't try the Keppra at this time & see what the Klonopin does instead.
One thing that I keep forgetting to mention, after reviewing the CT scan & MRI again, the Dr's have concluded that since the amount of brain atrophy is so minor, they are considering it normal. If you were to look at a perfectly normal person's brain, you might find the same amount of differences.

So far, I'm very pleased with Jacob's progress, and even though there may be a few steps back over the next several days, I have hope that things are looking better. The doctor told me today, the only thing keeping Jacob in the hospital right now is his lack of eating, & since nobody is wanting to rush to the surgery room to place a G-Tube in his lil' tummy, we'll just need to give him some time to respond & learn how to eat.

"If you permit yourself to let go of your worries, placing them in God’s hands,
trusting HIM completely, HE can truly lighten your load."

Overall Status: Good Day
Visitors: Pam, Melanie, & Sara
Dinner Provided By: The Keffalos Family

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