Thursday, August 18, 2005 - Today was a very moving day for me.  God has put something in my heart that is truly amazing.  While I don't want to go into too many details right now as my mind is still swarming with the ideas of how I want to make it happen, I will tell you that amidst all that we are enduring, my heart is searching for ways of how I can use this experience to help other families.  Crazy I know, you'd think I would be concentrating entirely on Jacob, yet I ache to find a way to help other families deal with their own NICU experience.

This is something that has been brewing in my heart since Brianna, I just didn't have all the pieces to the puzzle until now.   As I was in a cab with Brianna's nurse leaving Seattle Children's Hospital to come back home, she looked at me & said, Jamie, someday you will be helping other people.  I don't know what you'll be doing, but someday this experience you are going through will lead to you helping others.  Coincidence...I think not.  Although life sucks right now in the eyes of motherhood & medically, through Jacob, God is making me stronger & leading the way.  Could this be the 'why' we have been searching for?

There is a song that has been playing on KLOVE recently & the last 2 days it seems like it has been getting played a ton.  I must have caught it playing 6-7 times today, on the way to work, at work, on the way to the hospital, and even coming home for the hospital.  Earlier in the day, I was only singing the chorus, not really paying attention to the rest of the song.  It was as if God was sending me this message all day & little by little I would hear more of it, until finally I really heard Him & listened.

The song is by Superchick, titled We Live.  I encourage you to read the entire lyric, however here is the chorus:

We live we love
We forgive and never give up
Cuz the days we are given are gifts from above
Today we remember to live and to love

This is now Jacob's song.  I find myself repeating the chorus in my head constantly.  It's a reminder that I truly need to focus on the now, not what happened in the past or what may happen in the future.

I hope I can find the joy & feel privileged in knowing that God may have just sent me another angel baby.

Jacob's status hasn't changed.  I had a long talk with Dr A. Johnson today about the results of the EEG.  The number of seizures has not changed, in fact he had approximately 60 in 24 hours.  He did say, however, that the seizures were in multiple areas of the brain on previous EEG's, but this last one they appeared to all be centrally located.  He wants to double the Keppra one more time to see if it will stop them in this central area.  It's not very hopeful, however, we'll never put him back on Keppra again, especially at this high dose, so we might as well try it now.  He will go on another EEG tomorrow to see if the increase did anything.

If the Keppra doesn't do anything this last time, he will be weaned off it & by Tuesday a new drug will be tried.  We are also working on getting a "Care Conference" scheduled for Monday afternoon.  This meeting will include all of Jacob's care providers, Dr's, nurses, dietitian, physical therapist, etc.  We will be talking about some tough issues, but it's necessary so the staff know what they need to do in certain circumstances.

I also felt much more comfortable talking with him about the direction Jacob appears to be headed & I feel like we are on the same page.  He also said that the entire staff is so sympathetic to what we are going through, it's just not supposed to happen and doesn't.  I felt as though we finally made a connection.

Although the big miracle we all want to see happen doesn't look like it will, I can't push aside the fact that a lot of little miracle's are, we just need to have our eyes open to see them.

Overall Status: Stable

Visitors: Cindy & Larry

Dinner Provided By: The Neuroth's Family

Friday, August 19, 2005 - I arrived at the hospital at 8:30 this morning to give Jacob a bath.  He still had all the gunk in his hair from the last EEG & with another one on the way this afternoon, we had to get it cleaned & ready.

He loves his baths!  Eyes open wide for me today & I felt as though he was just soaking in what his mama looks like!  It was a bit busy for him today.  Dr Jolley, the pediatric surgeon came by to assess him & write orders for the prep work on getting the G-Tube done, i.e. x-ray to make sure there are no surprises.

Yesterday, I had informed Dr A. Johnson that I didn't think we were in any hurry to perform the surgery since it appeared Jacob wouldn't be coming home soon.  Needless to say I was a bit shocked to see Dr Jolley this morning.  Come to find out, there are only two opportunities for him to do the surgery, this Tuesday or next Tuesday, because he is going on a 3 week vacation.  Although he has somebody fill in for him while he is gone, that I'm sure is perfectly capable of doing the procedure, I think I'd rather it be Dr Jolley.  I already have a level of confidence with him since he performed Brianna's surgery.

Donna, his physical therapist was by.  It was the first time in a week that she was able to work with his range of motion to loosen him up because of all the EEG's he's had this week.  However, the EEG tech was there getting him hooked up today & we asked if we could please work with Jacob while these tests were running, which we now can.

His poor legs were so tight.  As Donna worked with him, his whole body relaxed, as if to say thank you...I've been needing that for a long time!  I did notice that after his legs were relaxed, he wasn't getting startled.  He was really calm.  Can't help but wonder if that might be a clue to what's going on.

The 'muscle' doctor also stopped by again to follow up with the procedure done on Wednesday.  He wasn't able to get a good study of Jacob's muscle's at a relaxed state, so I suggested the possibility of running the tests again while Jacob is sedated from surgery.  He thought that might be a great idea & is going to talk with Dr A. Johnson.

Dr A. Johnson also stopped by for a brief visit while EEG was getting him hooked up.  I wasn't there at the time, but I don't think there was really anything that we need to discuss until tomorrow's EEG results are in.

The EEG tech hooking him up was not the same one that has done the others.  She uses a different method of adhering the electrode's that is SO much nicer on Jacob.  It sticks a lot better, but isn't pasty & no need for all the tape on his head.  It can only be removed by using a special remover.  What this means is, they can leave it all attached & run continuous EEG's without an inconvenience to Jacob.  We will now be able to hold him while it's running, because the risk of the electrode's coming off is not an issue anymore.  YAY!

Kevin arrived at 5:30 after work & we were watching the EEG monitor.  Although I'm far from an expert on reading the monitor, I do know when Jake has a seizure.  He had 4 of them in 45 minutes, so I don't think the increase in medication is making a difference.  We'll just have to see what the results are.

Overall Status: Stable

Visitors: Grandma & Grandpa

Saturday, August 20, 2005 - There hasn't been too much change in Jacob's status.  He's having well over 60 seizures in a 24 hour time frame.  Dr A. Johnson was in today to discuss what the next approach will be.  He is now feeling pretty confident that the Keppra could be the reason for the increase in seizures, seems how every time we increase the dose, the seizures multiply.  We are going to wean Jacob off the Keppra by tomorrow morning.  The medicine has a half life of 15 hours so by tomorrow evening it should be out of his system.

They were originally going to do a slower wean because they weren't sure what the side affects would be, however, my gut truly thinks the meds are doing him more harm, so I requested they wean him faster.

Jacob goes in for surgery Tuesday to have the gastrostomy tube put in, a nissen fundoplication performed, as well as a muscle biopsy of the right quad.  He will need to be intubated & because his lungs aren't fully expanding, extubation could take anywhere from 3 days - 2 weeks (or longer), however, it's necessary for surgery.

Jacob is also having a harder time handling his secretions & I believe due to the medication, they have gotten thicker, causing a problem with his saturations.  Sometimes it all gets stuck in the back of his throat, causes dramatic heart rate drops (to 40-60 bpm) and oxygen level saturations of 20-30%.  VERY dangerous numbers.

That dang Keppra has caused nothing but more problems, I can only hope he starts to get better after this is out of his system.

He will continue to be on the EEG monitor until surgery so that we can keep a close eye on what the seizure activity is doing as he is weaned from the medication.

Overall Status: Stable

Visitors: None

Dinner Provided By: The Power's Family

Sunday, August 21, 2005 - I'll be so glad when this Keppra is out of his system.    He had more instances of dangerous desaturations & heart rate drops today.  Dr A. Johnson stopped by this afternoon to read the previous 20 hours of EEG information & reported that Jacob had over 100 seizures from yesterday afternoon until this afternoon.

I hope & pray these seizures are truly related to the medication & we aren't in for a really rough awakening come tomorrow.

Overall Status: Stable but Critical

Visitors: None

Monday, August 22, 2005 - Jacob had a really bad day today & we are emotionally drained.  At 8:30am I called the hospital from work to see how he did throughout the night.  I was scared to hear that he wasn't doing well.  Since 6am he had 6 instances of bradicardia/apnea spells.  Basically he would have a seizure that would cause his heart rate to drop & his chest cavity to tighten, causing him to stop breathing.

By the time Kevin & I got there by 9:30am, he had had several more.  By Noon he was up to 15 or more of these events.  It was very scary & we were uncertain what decisions we may have to make.  Dr A. Johnson ordered that he be given a dose of Atavin, which is in the same family of drugs as Klonopin, however it's given via IV & is fast acting, but not long lasting like the Klonopin is.

The Atavin, thankfully stopped the seizure activity.  It is now believed that Jacob's condition was progressing so rapidly that the Keppra was actually doing some good, just wasn't good enough.  As the medication wore off, his seizures intensified & put him into constant seizure activity throughout last night.  Dr A. Johnson put it this way: "his seizures were happening more often then he was able to rest".  Once Dr A. Johnson was able to review last nights study, he came back & asked that we start a new medication called Depakote.  This also looks like it's helping Jacob.

Dr A. Johnson thinks this might be Severe Myoclonic Epilepsy in Infancy (SMEI), also known as Dravet Syndrome.  He hadn't mentioned it before because originally his seizures were so easy to control; now that they have progressed so much more, he's beginning to think it might be.  At first, he said it couldn't be detected genetically, however, he then remembered that there is one gene where they can look for it.

When Kevin & I left at 7:00 tonight, he had had 3 doses of Atavin & one dose of Depakote.  Although he is still showing signs of some seizures here & there, he is much more stable & thankfully, Kevin & I didn't have any life or death decisions to make today.  Dr A. Johnson did reiterate today that he still doesn't feel as though they have done all they can do & just wants us to take it one day at a time.

We have received test results back from Wisconsin where they were testing for the Hyperexplexia Syndrome; this has come back 'inconclusive'.  (figures)  We have also received preliminary results from the Atlanta lab that is performing the spinal tap tests, these have also come back "although elevated in some areas, they are inconclusive".

As the doctor started to tell us the results, I jokingly finished his sentence for him.  He laughed & I told him that I could be a doctor by now!  Who needs nursing school or a doctorate?  Just spend time in the NICU like I have & it's the best OJT you can get!  Scary but true.

Kevin also made a funny tonight just before we left.  He said, "somebody needs to invent wireless EEG's, where the electrodes use infrared technology".  Wow...is that how we are going to make our millions?  Get on it Kev!!  *wink

Jacob goes in for surgery tomorrow morning between 10am-11am (PST), as long as he continues to be stable.  Please keep say a special prayer for us during that time.

Overall Status: Critically Stable

Visitors: Grandma Cray, Grandma & Grandpa, Kerry & Jessika

Dinner Provided By: The Cray's

Tuesday, August 23, 2005 - Wow, what a long day.  Jacob's surgery went very well.  They had a hard time intubating him.  The first time, he had too much of an air leak around the tube & wasn't getting enough oxygen.  They struggled getting the 2nd, bigger tube in & almost called off the surgery, however, they did finally get it.  No transfusions were needed, thank God!  I was getting a little worried as the surgery was only supposed to take 2 hours & we were creeping up to 3 hours before Dr Jolley came to tell us all was done, ok, & he was back in his room.

He was having quite a bit of twitching/seizure activity when he got back & Ativan wasn't really helping.  They ordered another drug that is also part of the same family as the Klonopin, called Medazalam, that was finally on board about 5pm.  It seemed to calm him a little more, but I'm still seeing some activity...sigh.  He's also on morphine for pain.

Poor lil' guy has an IV in his foot & hand, an artery IV in his other hand, a tube down his nose, a G- tube in his belly, a bandage on his belly & his right quad, as well as on a respirator.  Such a hard thing to watch.

He had quite a bit of swelling in his throat, which is one of the reasons they couldn't get him intubated very well.  Swelling is also caused by him aspirating, which the Nisson Fundoplication will prevent from happening now.

When the EEG tech removed all the wires that he had attached for several days, the electrodes appear to have caused some scabs/sores on his poor lil' face...arggg

Kevin & I are pretty tired tonight & I'm not sure what my plan is for tomorrow, go to work, sleep in, or go see Jacob.  So many hats to wear & not enough of 'me' to do them all!

Overall Status: Stable

Visitors: None

Wednesday, August 24, 2005 - I spent the day at his bedside again.  Since I can't hold him right now, I brought along a scrapbook project to keep me entertained.  Jacob is still in a critical status.  His lungs x-ray today was a big shock to us.  His left lung is almost collapsed & his right lung is close to being.  He has what's called a 'bell shaped' rib cage which is caused by the lack of proper lung expansion.  He has a lot of fluid in his lungs, most of which is probably caused by aspirating prior to the surgery.  We were told today that he may never be able to breathe without support.  Argggg not something we want to hear.

He was hooked up to another EEG again today.  Dr A. Johnson came to review some of it at his bedside & is very pleased with how the medications are working.  He stated he looks better and when I asked define better "last week before we started Keppra, or before Sunday/Monday"; he said before Sunday/Monday, which is a good thing because the seizures he's having now aren't life threatening like they were earlier this week.

Once we can start putting fluids in his stomach again, which should be tomorrow morning, we can start trying some other medications.  Since he is on an IV, there are only so many drugs you can try.

His night nurse turned off all the lights & closed the door to his room.  Jacob really likes dark & quiet, he really calms down & goes into a deep sleep.

Overall Status: Critically Stable

Visitors: Colleen, Ivy, & Sara

Dinner Provided By: The Dilley's