Jacob's Journey

Thursday, August 11, 2005 - I can't believe it's been 2 weeks today since this journey began. It's been full of ups & downs that's for sure. Today seemed to be a pretty down day. I guess after 2 weeks of trying to hold my head up high, I finally collapsed. It's been quite an emotional one for me, as I just can't seem to keep it together. He's so sweet & innocent, I just can't stand dealing with this. I'm not ready for what the future might have in store for us.

For the last couple of days, Jacob appeared to be doing well, however, I began to notice some increase in head & mouth movements. Today it escalated & my gut just told me something isn't right. I clocked him for 2 hours & 20 minutes; constant head movements, jerking back & forth as he tried to fall into a deep sleep. He looked so uncomfortable & at times would let out what I would call 'his cry' as if to say "make it stop, I'm tired & just want to go to sleep".

After he finally got into a deep sleep & all parts of him were relaxed, I called the nurse over & said I wanted to speak with the neurologist. It took a few hours to track him down. When he arrived, he could tell I was distressed about something. I explained to him what was happening since he last saw Jacob. As we talked, it aroused Jacob & he began to twitch again. Head jerking back & forth, eyes jerking, mouth twitching. Dr A. Johnson observed for a few minutes & then asked that I un-swaddle him so he could thoroughly examine him.

Although Jacob's arms & legs were fairly stable, his head wouldn't stop. It was decided to get an EEG hooked up right away to see what was going on, which will run for 17-18 hours. It's unclear if they are seizures or not & he also stated that it's possible his movements are just migrating to different areas of his body. Grreeaatt

He also ordered the spinal tap be done tomorrow, as well as some more blood work for additional testing. He also wants to look at the area of his blood that came back abnormal the last time to see what it looks like now. Apparently it should be zero, meaning you shouldn't see it in the blood at all; Jacob's level was 16, clearly abnormal. Looking at this again, might offer some more clues as to what's going on.

Once the spinal tap & blood work is done, he will add Keppra to see if it helps with the myoclonic movements.

The good news is Jacob was alert again today & did take another 3 cc's by bottle; still not much sucking going on though.

They also decided to increase his oxygen to 100% & decrease his flow to .1 liter. This is a more standard mix for him to go home on, should he need oxygen, which I'm guessing at this point will be a given. We also talked a bit about the G-Tube today. Although we still don't want to do it right now, most of us are getting prepared for the fact that it most likely will need to happen in order to bring Jake home.

I can only hope we'll have some answers soon...if only I had that magic crystal ball.

Overall Status: So-So Day

Visitors: Jared & Sara

Friday, August 12, 2005 - Today was a mild day with nothing really to report. He was removed from the EEG & I gave him his 3rd bath, which he loved. He also proceeded to poop on the towels again, yet I escaped!! Still pending the results of the EEG. They weren't able to get the spinal tap done today because they were still awaiting a call from the lab in Houston to make sure it was done correctly. It has been rescheduled for Tuesday.

Have I mentioned lately how much I really hate this?

Overall Status: Good Day

Visitors: Barb & Nicole

Dinner Provided By: The Priddy's

Saturday, August 13, 2005 - Noni & Papa picked up Amanda this morning for the weekend so Kevin & I could spend some time together alone as well as with Jake. Jake is having a rough day. He's struggling to breathe & his blood has a trace of carbon dioxide. They have increased his flow of oxygen which will hopefully help him out a bit. We've also been placing him on his belly which appears to help him breathe better.

Dr A. Johnson stopped by to tell us the results of the EEG. He's been able to review 15 of the 17 hours. Jake had 13 seizures in those 15 hours, however, the video portion of the test failed so he was unable to tell us what movements he was making at the time of the seizures. He also stated that most of them occurred between 11pm and 4am. Once he received his medication at 5am the seizures stopped & he was relaxed. He's ordered that the medications be staggered a bit to see what happens with the seizures then. He'll receive medication every 6 hours now.

He's also doubled the Keppra medication in hopes to decrease the Klonopin, which he believes is the reason for the respiratory distress and he's ordered another EEG be done on Monday.

That's about all to report for today. Hopefully it's just a little hurdle to get over & more good days are to come.

Overall Status: So-So Day

Visitors: Laura

Sunday, August 14, 2005 - Not too much to report today. Jacob is stable & still sleeping a lot with the medication changes.

Overall Status: Good Day

Visitors: Kerry, Grandma & Sara D

Dinner Provided By: The Stillers

Monday, August 15, 2005 - I went back to work today, my hours are 6a-2p. This will still allow me time with Jacob in the afternoon/evenings, while saving my maternity leave for when he is home. It was hard to go back, but I know it's what is best for right now.

Jacob was hooked up to another EEG today, beginning at Noon. It will run for 24 hours. He looked to be much calmer today, not near as many head/eye/mouth jerking movements. Hopefully that means the increase in the medication and/or the staggering of meds is working.

They are still trying to see if a lab in Portland, Oregon can do the testing with the spinal fluid, rather then sending it to Australia, so that is still pending. He is scheduled to have an EMG Wednesday morning. This is a test that is like acupuncture. It tests the tone in the muscles. Dr A. Johnson ordered this test be done because he's thinking his lack of muscle tone could be a factor with his shallow breathing.

So this week will be spent running more tests & hopefully we'll receive some of the previous test results back before the end of the week. Dr Jolley, the pediatric surgeon will be visiting us this week to discuss surgery for next week (most likely) for the G-Tube. They are also considering doing a muscle biopsy at the same time since Jake will be under anesthesia.

The geneticist came to chat with Kevin & I this evening about our family history to try & track down where this may be coming from. She concludes the same as Dr A Johnson has so far; based on our family history, this appears to be a 'recessive form' in that we are carriers the gene & it took the 2 of us to make this happen. She also reiterated that if that is truly the case, it's a 1 in 4 chance of it happening again. I'd say the odds are stacked against us.

Overall Status: Stable

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

Wednesday, August 17, 2005 - I arrived at Jacob's bedside about 9am today. The Dr was already there for the EMG getting things setup. There are two ways they test the muscles, in both cases, there are wires attached to little strips of paper that are adhered to Jacob's skin. The first way is by using a probe that sends a shock similar to static electricity, the second way is using a needle that punctures the muscle & records what it does when it's relaxed & retracted.

Jacob was awake when I arrive, first time he had been that awake for a few days. Was great to see his eyes so open & alert. He was really checking out the Dr -- just wondered what was going through his mind -- quit poking & shocking me probably! hehe

The test took about an hour & a half. When all was said & done, the muscles appear to be normal. This means he doesn't appear to have any peripheral nervous system damage, it's all central nervous system. Finally, something positive.

After the test was done, I was going to head back to work. Then I remembered the tech would be down sometime today to hook him back up to another 24 hour EEG, so I decided to hold him for a while instead, since I wouldn't be able to later. Just as I got him all settled in my arms, the tech arrived. The look I gave her I'm sure spoke a million words! I asked if she could give me just 30 minutes. She said the Dr wanted it started 2 hours ago. I said, that wouldn't have been possible, he was undergoing the other test! She offered to come back after 15 minutes, I was persistent & said 30! She finally agreed & off she went. She ended up not coming back for an hour.

After the last couple of days, I knew Jake & I just needed some alone time. He calmed down as soon as he got in my arms, which of course makes me feel even more guilty for not being there more often, sigh. It was a sweet moment hanging out in our private room with the curtain closed. Very peaceful.

One thing I forgot to mention yesterday: While I was talking with Dr Parrish, I asked if she would get some primary nurses for him. Jacob needs consistency. It's very hard to report back to Dr A. Johnson Jacob's status if the same nurses aren't taking care of him, especially since I can't possibly be there 24/7. Today, his nurse on duty was asked if she would be one of the primaries, which she has agreed to! Hopefully this will help Dr A. Johnson tremendously.

Overall Status: Stable

Visitors: None

Continue to Week 4