Tuesday, September 20, 2005

The Medical Team

Pediatric Neurology

Dr Aaron Johnson
Dr Roderic Smith
Pediatric Surgery
Dr Stephen Jolley
Dr Emilio Avila
Dr Eric Johnson
Dr Jack Jacob
Dr Kenneth Kesler
Dr Anjali Parish

Dr Lily Lou
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

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

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

Wednesday, September 14, 2005

Increased seizures throughout the night. 4 or more in last 45 minutes. Heart stops & loss of oxygen. On my way to hospital now...pray pray pray.

Overall Status: Critically Stable
Visitors: Laura, Mom Cray, Grandma & Grandpa, Chris C, Sara

Sunday, September 11, 2005

Finally...my first night back home. Today, we've had a little setback. Jacob's CO2 level has started to climb & was increased over yesterday, however, it's still considered good. The fear is his body is starting to compromise because he just can't keep his lungs expanded enough. He also had an x-ray today that showed his left lung on the verge of collapsing again...arggg So, Jacob spent most of the day on his belly, which helps to keep the pressure off his lungs, and he seemed to love it.

Dr A. Johnson called for a status this evening & although his oxygen saturations are still doing good, we have had to increase the percentage of oxygen he's getting. Jacob also had some bradycardia (drop in heart rate) events today. It's unknown if it's his lack of breathing that's causing the brady's or if seizures have caused them, or a combination of both.

Instead of continuing to increase the oxygen, knowing that he's most likely compromising, Dr A. Johnson asked that we put the NCPAP back on. We will do another CO2 check & x-ray tomorrow morning to see if the NCPAP has helped to correct the problem.

We've also added Keppra back in the lineup within the past couple of days due to increased seizures. As of today, his seizures did seem to be less often, which is good.

Overall Status: So far so good!
Visitors: Celeste

Now onto something a little off the page. A couple weeks ago, you may recall in one of my daily updates, I had mentioned something that I was working on, but it was too soon to share it with everyone. It's now time.

Saturday, September 10, 2005

Jacob continues to do amazingly well! As of yesterday about 6pm PST he was downgraded to a nasal canula!

He is currently on 1L of flow with about 30% oxygen. He is also no longer under the radiant warmer...he's in a REAL basinett!


His CO2 last night at Midnight PST was NORMAL.

If all continues to go well, we might actually be taking lil' Jacob home soon...could it really be happening???

Continue to keep us in your prayers!!! God is hearing each & every one of them.

Overall Status: So far so good!
Growth Stats:
8lbs 10oz
Visitors: Brooke, Colleen & Reid

Thursday, September 8, 2005

I'm staying at the hospital tonight to be closer to Jacob so I don't have the means to update his website, however I do have access to my email!

Jacob was extubated at 7:00 PST. As of right now, he is doing REMARKABLY well!!! We just did a CO2 check at 10:00 PST and its better then normal! It's right where it should be!

He's currently on a NCPAP (Nasal Constant Positive Air Pressure). This is in his nose similiar to a nasal canula, but instead of just flowing oxygen it gives a little pressure to hopefully keep his lungs open. He is also on his belly which he seems to really enjoy. Being on his belly will allow the secretions to stay more in his mouth instead of draining into his lungs. He's doing a lot of "eh heming" trying to clear out his throat which is a good sign, now he just needs to get the coughing down & he'll be clearing out his lungs in no time.

They won't do another CO2 check until 7:00 PST tomorrow morning, unless something tells them otherwise. Right now he is just doing wonderful. I'm not trying to get my hopes up too much quite yet, but so far I think he's amazed all the doctors...here's praying he'll keep it up!

He goes in for the 6 hour sleep study tomorrow morning at 10:00 PST as long as he continues to do as well as he is.

I'll try to come back again sometime tomorrow to update you some more.

Keep those hard core prayers coming!

Overall Status: So far so good!
Visitors: Colleen, Sara & Jared
Dinner Provided By: Colleen, Sara & Jared

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

Monday, September 5, 2005

Visitors: Colleen, Grandma & Grandpa

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...

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

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