Thursday, September 15, 2005 - I really don't know what to say about our little Jake. He is still having 'events' although they appear to not be as frequent. His CO2 level this morning was elevated, but normal for him so they are very happy with that. His oxygen requirements decreased throughout the night to 21-25%, down from 30-33%.
The NCPAP is still doing a great job with keeping his lungs expanded, it's just a mystery as to why he's having these events. Some speculate it's because he gets tired breathing & just decides to stop. Others think it's triggered by seizures, which sometimes it appears so, other times he's completely still & then goes blue.
At this point, we aren't sure what to do. The answer from God just hasn't been given to me yet, so I just keep truckin' along.
Pray that God will provide us a clear path, peace with whatever happens, & strength to continue this journey.
Overall Status: Stable
Visitors: Celeste & Judy, Noni & Papa, Kerry
Dinner Provided By: Celeste
Sunday,
September 18, 2005 - Amanda came to see Jake yesterday & we finally took
a family picture. Course, this was before the NCPAP was removed so we
might have to take another one!
(click picture to see it larger)
Is this ride over yet? Jake is doing about the same. The NCPAP was replaced with Vapotherm on Saturday. Vapotherm, is a high flow nasal canula that works like the NCPAP, however, it's easier to maintain & doesn't sit on his nose like the NCPAP does.
He seems to be tolerating it. His seizures are not as controlled so over the last couple of days, his medications have been adjusted. He's still on Klonopin, Depakote & Keppra. While I was there today, he was having a seizure every 5 minutes. Some were brief, others were prolonged, lasting about 1-2 minutes. He's still having 'events' but is self recovering from them.
He doesn't seem comfortable to me at all. The pain I feel in my heart every time he seizes is indescribable. He has got to be so tired from having all these seizures. I'm just aching. I don't want to see him suffer any longer, but at the same time, I hate the thought of letting him go.
It's such a vicious cycle.
Overall Status: Stable with increased seizures
Visitors: Grandma & Grandpa (Saturday)
Dinner Provided By: The Newman Family
Tuesday, September 20, 2005 - No words can describe the pain I feel in my heart right now. Jacob Tyler Aldridge joined his big sister, Brianna Renee, at 2:45 am (PST) today. Watching, holding & comforting him the last hours of his life was the hardest thing I will ever have to do. I had a vision in my mind of what it would be like having been here before, and it was nothing like it. I hope I never have to watch a friend or family member in their last moments ever again. I also hope, that over time these vivid images in my mind begin to diminish so that I can remember the happier times we had with him, although they are few.
I want to take this time to thank our friends, family & all the prayer warriors that gave us strength to endure this journey. I would also like each of you to consider purchasing the Journal the Journey kit that was inspired by this sweet son of mine. Join me in carrying out what I believe to be his purpose & journal an event that is dear to your own hearts so that it too can be passed down for many generations, as well as provide remembrance of happier times, or some sort of healing for the sad ones, as it's done for me. Included with each kit are Jacob's footprints, help me to spread them across this country & allow him to continue to touch more lives then anyone could imagine, including those children suffering from Hurricane Katrina.
Kevin & I aren't sure what kind of arrangements will be made yet, however, one thing is for sure, we are going to do our best to get a helicopter ride over to Mt. Susitna. He needs to be with his big sister.
It tears me up to know that you are no longer with us, Jake, but it warms my heart to know that you are no longer suffering.
Rest in peace my sweet son,
Love Mommy, Daddy, & Big Sissy Amanda