Brisan and Parker Stults | Living with Niemann-Pick Type C

Many of you know that Brisan flew into the arms of Jesus at 1:55 am last Tuesday morning, March 4, 2014. We wanted to share some of the events that Monday with all of you.

Monday March 3, 2014 started off like most days in our household: me coming home from the gym getting Brisan, Parker, and Duncan ready for the day. I put Brisan in a red long sleeve shirt with gray sweatpants. Unlike most March days, we had a snow day so they were out of school.

Monday Morning

I came home a few minutes later than normal because of the snow day and not having to rush around right before 8am and that song Hungry Eyes by Eric Carmen was just playing on the radio. A kind of song that you remember. I started to take care of the boys such as diapers, meds, feeds, and etc. Brisan was in a great mood as you will see or have seen in the video I so gratefully took that morning…. even laughed on camera! I told the Lord thank you after I hit stop. It is rare for us to get him on camera. They were watching scooby doo!

Video of Brisan

I proceeded to get him dressed and place him in his “old man chair” (mini recliner). A normal thing for us to do because he wouldn't try to “jump” out like Parker does. Later that morning he had a normal seizure then followed by a violent seizure.. convulsion like. Shortly after it followed by another just like it. We both looked at each other (Jenn) and was like…we've never seen this before. It was scary looking.

We got him back in his bed, hooked up oxygen because his O2 stats were high 80's. We were hoping that the oxygen would help him come down a bit from his heavy breathing. It soon followed that we gave him medication to help relax him that is common for seizures.

Jenn & Duncan were already heading out when this all happened to the Library with some friends. I urged Jennifer to go ahead and go because Duncan was excited. I felt that he would calm down because we've had similar experiences in the past that gave us both comfort to a degree.

That Song

It was just me and Bubbas Monday afternoon. My office is at the top of the stairs that overlook where their bedroom is. Very easy to see and be in ear shot of anything that was going on. I had pulled up YouTube because I wanted to hear Hungry Eyes again. As it was playing in the background, I remember looking over the railing and me and Brisan locked eyes. He didn't look scared but more of what is going on to me??? The lyrics to the song is clearly a chick song… but…. some of the words really defined the moment.

With these hungry eyes

One look at you and I can't disguise

I've got hungry eyes

I wanna hold you so hear me out

I wanna show you what love's all about

I felt bad because I couldn't do much to help him. Shortly around 4ish Jenn arrived back home and we quickly called the ambulance. It just didn't seem like he was improving although he showed a brief sign that he was. I recall taking a picture of them pulling out of our drive way thinking… there aren't going to be too many of these times where he is going to leave like this and come home. To little did I/we know… God had his homecoming in the works.

Jenn said as soon as they arrived (they ran hot down… about 25 mins away)…they gave him a couple huge doses of fluids to help him but had to cut off that red long sleeve shirt. His white blood count was 40,000. Extremely high but didn't know what exactly they were “fighting”. Heart rate still extremely high but his blood pressure was stable but not too concerning yet. They moved him quickly up to Children's Mercy Hospital's PICU unit where he has spent some time before. They had put him on the BiPAP machine for a last ditch effort before intubation. He recently was in the PICU for his January 10, 2014 Iluestomy Bag surgery.

That Evening

I arrived about 7:30pm after I arranged child care for Parker & Duncan. Duncan had karate that night and went with our neighbors.

During that time he was critical and clearly his body was going into shock. Around 11:30 his heart rate dropped from 180 to 129 in a split second so they drew blood and one of the big things that stood out was how much his PH level's dropped. His blood gasses were turning very acidic and was around 6.44 and then into the 5's (normally we all have a level around 7.4). At that moment, they needed to intubate him and we were asked to leave the room. We kissed him and looked into his eyes for the last time.

About 20 minutes later they came out to get us. Said he very much didn't like the intubation tube and essentially coded. We came back and watched in the doorway while they did chest compressions. It was like a NASCAR pit crew working on him. Over the next few hours they did the chest compressions about 4 times and various measures to try to get him stable. This was all about 12:20-30 am Tuesday morning. After 1 am, they asked if we would like to go up and talk to him. As we walked up to see his face… we knew he wasn't “home”. Eyes glassed over…no movement whatsoever. Although his heart was beating… his blood pressure was extremely beyond low and that was what they kept working on. We told him if he needed to go “home” that it was OK since the doctor said kids will either show fight or tell you that they want to go but continued to love on him. We had to allow them to keep trying because that was the right thing to do. You can't go back and “try”.

Finally the moment of truth and I looked at the doctor and asked that she had to tell me like it is. Was the blood transfusion going to do any good? What are the chances he is going to make it out? She sat us down and said something “catastrophic” has happened to him. She pulled us to Brisan, pulled back his blanket and said “do you see how diluted the blood in his g-tube is? He's bleeding internally and we don't know why”. —- Asked if the blood would help; she said no. I look at Jenn and back at the doctor and said “Let him be”. An unbelievable thing that we had to do. It was hard. A few faint heartbeats left as we listened, they called it at 1:55 am.

We instantly started showing our love on Brisan. We were surrounded by friends and family who witnessed Brisan's homecoming. For the next few hours we just loved on him and was trying to take it all in.

We left around 5 am from CMH. The first time we have ever left the hospital without Brisan.