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

Posts Tagged ‘Children’s Mercy Hospital’

Well hello there! It has been a few months since we last updated everyone on our blog. Our emotions have been a whirl wind of ups and downs which are to be expected but until you FEEL them… there is no preparing for the response of how you truly feel in that moment. A typical day of emotions rise with a constant thinking of Brisan. You still think about how unreal at times it really feels in brief segments but you always turn back to knowing he has been “healed”. That doesn't make it any better…. let's be truthful in the matter. We still have his bed up and pretty much the way he left it. Not a moment goes by you don't look over that way visualizing him sitting up and watching TV or something.

At times when you love on Parker you see glimpses of Brisan and for a tad second you feel guilty because you don't want any of your feeling to take away from the precious moments left with Mr. Stinky. He has been a fighter. When he is in a good mood… he makes an occasional “humming noise” with a slight groan. It is kind of like his “Master P” lyrics. Make them say “ummmmm”. (I am sure not all of you will get that 🙂 ).

Pete's Puffs Delivered

In the New Chapel at Children's Mercy Hospital | KC

So in honor of our Bubbas, Jennifer orchestrated a Tissue drive so we can help Children's Mercy Hospital out because again… who wants to wipe their nose on sandpaper? Bueller.. Bueller? After 606 boxes (thank you guys for all of your support on this!!!) and sitting in our dinning room since the end of August ( I know… I know…), we carefully labeled them with the Pete's Puff's logo and a quick story about why they may have this box of tissue at their hands to use. So 606 individual boxes and 13 moving boxes packed up… we made our way down this past Monday, December 22nd to deliver them to the volunteer/ chapel / care team to quickly disperse.  Read the rest of this entry »

Many of you are aware that on Aug. 31st we had a celebration to honor Brisan which normally would have been a big shindig for his birthday. Instead we had food, live music, and a “drive” for donations of Kleenex boxes to honor him. Our goal was 250 boxes to give to Children's Mercy Hospital to help get rid of the sandpaper we had to use during Brisan's homecoming March 3-4th. As Jennifer had stated, “No one should have to use sandpaper to wipe their nose after their kid dies”.

Petes Puffs Donations

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On Sunday, August 31, we are having a Celebration of Life for Brisan. His 10th Birthday is upon us this upcoming Wednesday, August 27th. A milestone birthday to say the least for any kiddo except there is no big party with his physical attendance that we will be able to snap a few “pictures” of. Life is such a stark kick in the nuts, wouldn’t you agree? It will take place at Pleasant Valley Baptist Church in the “Well” from 6-8:30 pm. Drinks, food, and music by Jason Ellsworth will be provided! We hope those locally can attend and just enjoy some fellowship. After all, he’s on the best vacation of his life!  Read the rest of this entry »

Brisan Stults' Autopsy

Did you play the drum roll sound in your head? June 30th we had our meeting regarding the Autopsy of Brisan with CMH. That meeting consisted of a handful of individuals who cared for him that night and also who have been involved with our family in various manners.

Another step in the grieving process as that day approached. 16 weeks that vary day Brisan went to CMH in a blazing fast ambulance ride. Matter of fact… seeing an ambulance running “hot”… takes on a new meaning for us. Flashbacks of me watching them pull out of the drive way thinking to myself “there aren't too many more of these rides he is going to leave and come back” and for Jenn, experiencing the “ride” down there when CMH said “get here fast”. We live about 25 mins or so from the hospital.

Arriving

As we put on our big boy “pants” and pulled into the parking garage not saying much to each other because of the tension we already felt of having to relive the night. The fear of what the answers may be and even the fear of not having any answers at all. Typically they aren't going to do an autopsy for kids with a rare disease like this. You know why they past away for the most part but not Brisan. Didn't seem to make sense although he was battered with Niemann-Pick Type C, there was something else that propelled him into his homecoming.

The Meeting

Over 2 hours we spent in that room going over how we have been, specifics of the report, and what can we do regarding Parker, our Mr. Stinky. Emotions ran high at times and other times we kept a calm outwardly approach in presentation of our feelings. Many tears were shed on different levels. The staff at CMH was nothing but professional with a huge vulnerability of wanting to know how we were; to cater towards how they can help us moving forward.

A few items we wanted to clear up was did he bleed internally? Did he have an issue from his Ileostomy surgery this past January? Did his red blood cells just “destroy” themselves in a rare occurrence? I mean, we are talking about Brisan here. Bubbas never did many things to the “normal”. He went from one extreme to another and he pulled out of those. We purely have to give God glory and thanks for those triumphs. A part of us was really worried March 3rd but Brisan had proven that we may just need that 2-3 week hospital stay to get feeling better.

Jenn was referencing at one point that Brisan past awayed 9 days before my birthday and I don't know why that was so impactful to me at that time but I nearly lost it. I pushed back my chair, head towards the ground while I tried to gather myself. That rush felt like an avalanche taking place racing up the top layer of my skin to the back of my eyes.

Autopsy Findings Read the rest of this entry »

Brisan Michael Stults | August 27, 2004 to March 4, 2014

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. Read the rest of this entry »

Well, it's been a few months since I last posted. Much has taken place. We've moved and are getting settled into our new home and as you can tell by the title we've visited Children's Mercy again with Brisan. We think he must have missed the nursing/doctor staph.

GJ Tube diagram

On October 15th, Brisan went in for his GJ-Tube “upgrade” from his G-Tube. A relatively minor procedure since it only took a few minutes. He stayed over night as a precautionary measure to say the least and came home the next day. By Friday the 18th… that morning he developed a high temp. Read the rest of this entry »