Tuesday, July 1, 2014

July 1, 2012

Since Jack died on a military installation there had to be an investigation. I had to answer many questions about the day before he died and explain in detail what happened that morning.

One month after he died we had to go in and give a statement. I thought this would be more questions but they actually made me type up what happened the morning that he died.
For some reason I thought that it would be a good idea to type it on here. I did and it has been sitting in draft status for almost two years. I just didn't know the right time to let everyone know what happened.
We really don't know what exactly caused his death. An autopsy was preformed but I will never look at it. His death certificate states that his cause of death was "Seizure Disorder". Doesn't really tell me much because he had such horrible seizures.
This is what I remember of the day Jack died. Some parts are very clear and some are not. I kind of just stop at the end because that's really all I remembered. Shock set in and I really wasn't all there. 
He woke up at 3:30 am.  I went to get him out of bed and he was pretty upset so I sat on my bed and held him.  He calmed down quickly then I laid him down on his stomach and he had a tonic seizure.  I decided that it wasn't a good idea to leave him like that since he turns his head during those seizures.  I got him comfy on his side and he fell back to sleep.  I laid back down and then made sure his circulation wasn't getting cut off by laying on his arm.  He was calm and asleep.  I fell asleep.

I woke up at 5:30 am and checked on him.  He had rolled to his stomach and his face was down against the bed.  I turned his head and put his drool cloth under him.  Then I realized that there was no resistance when I turned his head.   I felt for his back moving up and down for breathing.  Then felt his arms and legs.  They were cool.  I felt his torso and it was warm.  I jumped up and turned on the light and flipped him over. 

He had pressure lines on his face.  My thought was... oh my god, he's, no.  Then complete panic hit.  Oh my god.  I dialed 911 and got the Radcliff dispatcher.  When I told them my address they transferred me to the Fort Knox dispatcher.  During the transfer, which felt like 10 minutes but was about 30 seconds, I started CPR on Jack.  Once Fort Knox got on the phone they asked if I was doing CPR.  I told them yes but I couldn't remember how many compressions and how many breaths.  30 compressions and two breaths.
The ambulance arrived.  The paramedic took one look at Jack, scooped him up and carried him to the ambulance.  I ran behind them telling them he had epilepsy and took a lot of medications.  I had to let them take him because I was home alone and had to get Sarah.2 breaths then check for breathing and pulse. 

I put shoes on while the police held Sarah.  We rushed to the hospital and the police escorted me in.  I was greeted by a nurse who immediately asked for my ID card.  I just looked at her and shook my head.  Then another nurse came up and took Sarah from me so I could go be with Jack.  I got to the end of the hall where I could see them doing CPR on him.  I collapsed.  I few people sat down with me.

Someone came and asked me to go in to the room.  I stood up and saw that they were still working on him and couldn't move.  The nurse kind of pushed me to the room.  I stood and watched.  I was given a chair to sit in.  I sat.  I felt like I wasn't even in the room.  My head was spinning and I couldn't hear anything. 

They asked me to come up and be beside Jack.  I stood there and held his hand.  I felt like I was in the way.  I knelt down and kept talking to him.  I touched his hair. 

The doctor came up to me and said that they had been working on him for 40 minutes.  That if he was to come back that he would have an apoxic brain injury.  I told him that he has a brain injury from birth.  He then asked if they could stop life saving efforts.  I told them yes. 

The room was empty almost immediately.  I was alone with Jack.  I kept telling him I was sorry. 

Thursday, January 9, 2014

Memory Monday (Snow in San Antonio) 2/4/11 - 38

Friday, February 4, 2011

We don't get snow very often down here.  While watching the weather this morning the newscasters said that it hadn't snowed like this in 5 years.  Well, with this small amount of snow it shut the city down.  I mean literally.  The 3 major interstates that run through SA were CLOSED.  Under the snow was ice and it was slick out there.  Not that we ventured out today but there were alot of videos from around town with cars sliding everywhere.


So with the snow comes snow days.  John didn't have to go to work and Jack's nurse couldn't make it today.  So we just spent the day inside snuggling.  Jack really enjoyed it.  He even got to try a new keto snack today.  Pureed peaches with cream cheese and butter.  I think he liked it, only minimal came out of his mouth.  His next treat will be cauliflower with cream cheese and butter.  I hope it likes it.
Watching his lights
Wanting me to pick him up

Here are a few pics that I forgot to include in the last post:

First time sleeping in his new bed

Rusty protecting Jack

 Posted by Tracy at 6:37 PM 4 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif

Labels: Feeding, Happy, Ketogenic

Monday, December 16, 2013

Memory Monday (16 weeks pics) 2/2/11 - 37

Wednesday, February 2, 2011
I'm a little late posting this seeing as I am almost 17 weeks.  Last week while I was at the OB they measured my cervix length.  This is something that I will have done every two weeks until my 2nd trimester is over.  Having a bicornuate uterus puts me a risk of miscarriage in my second trimester.  The doctor is not too concerned about this because I carried Jackson until 38 weeks.  If my cervix shows any signs on incompetency then they will put a cerclage in.  This would keep my cervix closed until the doctors remove it.  I asked the OB is she could go ahead and put the stitch in now and she said no, that it could cause more problems.  I'm still scared to death that something may happen with the pregnancy but I know that they doctors are doing everything they can to prevent it.  With Jackson I didn't know I had a bicornuate uterus so they took no high risk precautions. 
I'm feeling like myself again.  I can eat and I want to eat all the time.  Mom said that if she stayed any longer that she would start putting on the pounds with me.  They were concerned that I hadn't put on any weight yet, in fact that I had lost so much.  But in the past week I have gained 5 pounds. 
During the ultrasound the baby was very active.  The tech would tell us to look for the hand and it would move across the screen.  Of course the baby was not cooperative at all in finding out if Jack is going to have a little brother or sister.  Those little legs were crossed tight!
Yes, I'm wearing capris!  It was 80
 degrees this weekend!  (now it's 20)
Starting to look more like a baby and less like an alien.
I think the baby has Jack's nose.
Posted by Tracy at 4:53 PM 2 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif
Labels: Baby, Pregnancy

Monday, December 9, 2013

Memory Monday (Hair cut!!) 1/28/11 - 36

Hair cut!!

Grandma Barbara came to visit this weekend.  We found her an apartment that will be available in April.  We also cut Jack's hair.  She cut, I held his head and John took pictures.  Overall it was a success!  He looks like a little boy again.  He looked pretty shaggy before! 

I recently read a post about another little guy that couldn't hold up his head.  He and his mother went  into a large chain of hair salons and they refused to cut his hair because he couldn't sit in the booster seat.  Even though that did cut his hair before while he sat in his mom's lap.  As I was reading her blog it broke my heart that they had to feel so alone.  In the end, they did cut his hair one last time but said that they would not do it again.  I wish they were in San Antonio because my mom would definitely cut his hair.  Even if it is on the living room floor.
Hurry up guys

This is hard work

Ready for his bath
New pajamas, look at his long legs!
His Spiderman pose
Snoozin' with Daddy

Posted by Tracy at 4:15 PM 3 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif

Labels: Happy

Monday, December 2, 2013

Memory Monday (Good news) 1/25/11 - 35

Tuesday, January 25, 2011

No anesthesia for Jackson!!  When we arrived at the opthamology office both doctors agreed that he didn't need to go under for draining.  They did open it back up with a needle and drained some blood. 
The rest of the blood will either be absorbed back into his body or drain out of the site.  She wasn't concerned about it because once he starts the antibiotics his body should take care of the rest.  She said that we can always make a decision later to go in and drain it if it hasn't cleared up.  

So for the third time this week we will go back to Wilford Hall on Thursday.  They want to check it one more time.  Maybe this time we can actually get his immunizations. 

Posted by Tracy at 12:55 PM 1 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif

Monday, November 25, 2013

Memory Monday (Spontaneously opened up) 1/24/11 - 34

Monday, January 24, 2011

That's what happened to Jack's cyst today.  His nurse was putting coconut oil on it because the skin was really dry and it opened up.  She said that some green guke came out and then blood.  It then turned more purple and looked really bad.

When we got to Dr. Easter's office he was concerned about it.  He had another doc in his office look at it.  He made the decision to start antibiotics and do warm compresses.  He also sent us to dermatology so they could take a look at it.  They opened it up again since it had closed from this morning.  They got a little puss to culture.  A lot of blood and a very unhappy baby.  But he wasn't unhappy because they were messing with him it was just his time to throw a fit.  Other than that he did really well for them.  He is definitely a trooper.

Our day doesn't end here.  The dermaologist wanted us to see opthamology because it was so close to his eye.  They again looked and poked at him.  More blood and a squirmy baby.  They checked the white part of his eye and everything looked good.   After seven doctors and a lot of debating on what to do here is the conclusion.

We will start the antibiotic and go back tomorrow and they will open it up to drain it.  Since he cannot stay still he will be put under.  Unless, by some chance the meds kick in and it starts to clear up.  So we leave and John goes to pick up the med at BAMC.  When he is leaving he calls me to let me know that they do not have the tablets but gave him a suspension instead.  He told them that he was on the keto diet but they did NOT understand.  They told him to give him more water so it would dilute the sugar.  NOT how the diet works. 

I went into a panic.  I emailed my yahoo groups for their opinion and start looking up the amount of carbs on the internet.  3 grams of sucrose per 5 ml.  He would 5 ml 3 times a day.  His meds are supposed to stay under 500 mg of carbs a day.  9 grams would put him WAY over.  To make a long story short.  We are not giving it to him.  We made the decision to go ahead and have it drained and we will get the tablets tomorrow. 

Jack was having a tough time this evening.  He was having a lot of seizures and crying so I gave him some Tylenol and now he is resting comfortably.  I think his eyebrow may have been sore.  This is what it looks like after all the prodding today.


Posted by Tracy at 8:29 PM 3 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif

Labels: Ketogenic

Monday, November 18, 2013

Memory Monday (60-79-63-44-22) 1/23/11 - 33

Sunday, January 23, 2011

Those are how many seizures Jack has had the past 5 days.  79!!!!  I couldn't believe that one!  This has been the first time in a few months that I have been counting.  I guess they really crept back up on me.  I hate that he has been suffering and I didn't even know they were seizures.  We decreased keto diet ratio on the day that he had 79 seizures.  Then they have been dropping since then.  What does that tell me?  I have no clue.  Is the diet not really working?  Did he need to be on a lower ratio for better control?  Has he been having this many all along?  Too many questions!!  Will he ever get seizure control?  I hope the answers will come in time.  Until then, I have to watch him suffer and not develop.   

Other than the seizures he is doing pretty good.  The last two nights he slept until 6:30.  Once I started feeding him he fell back asleep.  During the day he's been alert and watching his lights and football. 

He has done really well with the amount increase of mouth feedings.  He can finish them in about 10 minutes.  He seems to do better when Daddy feeds him. Speaking of John feeding him, he's doing it right now.  Jack is cooing and John is whispering to him. So sweet!!  I guess he just loves spending time with Daddy.

We go to HIS pediatrician tomorrow.  If you read the recent post about the other doctor that we saw you know I wasn't happy.  I'm actually looking forward to tomorrow and getting some answers.  If he can't do anything about his eye then he will send him somewhere that can.  He's had the cyst for over a month and it is now getting bigger.  He will also get his immunizations.  Not looking forward to that but I know he needs them.  So until then...

Posted by Tracy at 6:29 PM 0 comments http://img2.blogblog.com/img/icon18_edit_allbkg.gif