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

Posts Tagged ‘rare disease’

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 »

Few days behind in getting this posted. Brisan on Jan. 10th had an Ileostomy bag placed to help reduce the distention in his colon/ bowels. I can't think of a better way to sum up everything than by posting Jennifer's updates from Facebook.

Jan 10th:

Brisan is all settled into his room and doing well. He chose to be weaned off of the ventilator on his own so he is now off and got to be extubated! He's been awake off and on and his color and lung volumes are some of the best I've seen in over 4 years. Plus since we're not worried about gut motility he can have morphine again. He has had some vomiting and seizures but that's to be expected since he just had a major surgery. Thanks for all of the prayers and keep them coming.

Jan 11th:

Brisan update: so he's doing okay. Had fevers off and on all night and today. His BP is holding it's own but it is trending down. But he has an art line so we can monitor that better and more accurately. He is getting his pain meds scheduled but for some reason is very restless and hasn't slept at all. His new stoma is okay and from what we can see the bleeding has stopped. So now we are just trying to get him some rest.

Jan 12th:

Brisan Update: So Brisan is out of PICU and on the floor. He's having some pain management issues and possible withdrawals. This am we had a scare. He started coughing and his O2 dropped really low and wouldn't come up. So after some cough assist, breathing treatments and a chest xray he's back on oxygen and getting more pain meds. Waiting for Dr to come back to see what plan is.

So Brisan's chest xray came back that his lung volumes aren't great and he has some shading. So they are now keeping him on antibiotics for double pneumonia

Jan 13th:

Brisan Update: so he's been holding his own. He's had some de-sat issues but that we can work with. His new “bag” is working great and is already producing. I got training on how to change his bag today and Bri seems to not mind it. His life is drastically changed since the surgery. Thanks to everyone who has textex, emailed, called and prayed for Bri and our family.

Tomorrow August 8, 2013 will mark the 5  year anniversary of what we call “the phone call” regarding to Brisan and Parker's Niemann-Pick Type C disease diagnosis.

It seems that every year is going faster and faster as we move further into the the upcoming years knowing that time isn't on their side. However, we do have some good things to celebrate and not to make this post all about being sad. We will be moving soon to a new home that will allow us some positive situations. The down side is we will be giving up other things like the boys' school teachers, nurses, and even friends we became close with. The whole situation seems to be showing much favor for us. Duncan will be starting Kindergarten here next week! Their new school seems to be really “going to work” for us already. I hope that they keep that level of excitement in the upcoming future.

Since March I had started a new opportunity and have been focusing on leveraging my skills to be a key contributor to my team. Everyday I look forward to bringing my “A” game and putting a positive stamp on it. We've not had any foster kids in our home since Memorial Day weekend. It has been very nice most of the time not to have that additional responsibility… at least that is how I feel :).  Jennifer has stayed pretty busy herself.

~ Mike

A tad bit behind on getting this posted up but wanted to share the link to the article on the 2nd half of the story the Grain Valley Pointe Newspaper written by Chris Fischer.

We have been very much appreciative of them taking time to share with the public at large about Niemann-Pick Type C disease. It helps spread the word!

Read More Here: http://go-tiny.com/StultsFamily2

On Monday, I just was fed up with Brisan and the amount that he was sleeping. So I took him back to Children’s Mercy Hospital around 2pm. By 7pm the ED agreed that Brisan was in a ton of pain and needed to be readmitted to the hospital.

This afternoon Brisan has an eye exam and CT while under sedation. Come to find out, after more than a year, Brisan has an acute Corneal infection in his right eye. The doctors said that it is really bad and we are going to have to keep an eye on it (no pun intended). If untreated it can eat a whole through his cornea. So they are starting him on IV antibiotics along with steroids and a Morphine drip for the pain.

Hopefully this will open a ton of doors for Brisan and he will be able to see out of that right eye again! Now we just have to pray that there in no damage to his cornea and that he will cooperate with the medications that we will have to put in his eye until it is better.