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

2 Weeks ago today Parker went home to see Jesus and Brisan. I like to say he is experiencing the ultimate vacation package. We can only imagine the joy he is having with no more Niemann-Pick and his earthly inabilities that prevented him from experiencing a typical childhood. They only have a childhood to live a lifetime is a very true and stark reality now that we’ve come full circle. What can we really say other than “did this really happen”? We love you Parker! No words can accurately describe how we are feeling right now. All this in under a year. Who would have thunk it.

• Parker’s Obituary in the Kansas City Star: http://www.legacy.com/obituaries/kansascity/obituary.aspx?pid=173975546
• Our GoFundMe URL (Thank you Dawn for setting it up): www.gofundme.com/parkerstults
• Recent Kansas City Star Article by Eric Adler Jan 2015: http://www.kansascity.com/news/local/article8589614.html
• Original KC Star Article By Eric Adler Oct 2008: http://www.kansascity.com/news/local/article8589011.html 

Timeline of Events

Parker passed peacefully at home on Friday, January 23rd around 1:55pm. We were surrounded by our friends and family during this time. The room was eerily quite while Parker took his last few breaths which were few and far in between. As the morning started and progressed, so did his breathing which indicated to all of us that he was in big trouble with the reality of his homecoming in the distance future. 

The days leading up to it seemed to gradually build the suspense of what was happening to our Stinky. Even before the last few months it seemed he would run a temperature off and on with no rhyme or reason. One day in a great mood and then the next sleeping most of the day. Tuesday night we went to bed with Parker appearing to be sleeping soundly. Around 1 in the morning I just so happen to use the bathroom and as I laid down I heard him cough. A cough that seemed suspect but not too concerning. I felt urged to go check on him. As I came upon him I discovered he had vomited everywhere. He was laying on his left side and also in the mess.

I proceeded to get him upright while he continued to vomit and wretch. I was trying to multitask to gather something to keep it from going all over him. Once he subsided for a bit, I took his shirt off and changed his diaper. I put him in the “old man” chair that him and Brisan shared so much. During that time I cleaned up his bed and then I knelt down in front of him. He was starting to get the shivers and had that eye contact with me. He then suddenly made a sharp turn to his left to look at the Charlie & Snoopy canvas's on the wall that were signed at Brisan's funeral services. In between those two canvas's is a big wall sticker that reads “Never give up hope”. He turned to look at me and I placed my hands on the caps of his shoulders and said “oh little buddy, I hope this isn't what you are telling me”. I didn't really know but after Brisan's passing… we have been on high alert with the grieving and hurting heart with the littlest of things striking that fear of reality in us.

I placed Parker back in bed where he threw up 2 more times (4 times total). I went upstairs to get Jennifer to notify her of what was taking place. We called out the on call hospice nurse and at one point he hit a 104.1 temp. We pulled out all the stops to get his fever to break. We saw signs of it starting to lower but was still above 101. I went to bed around 4:30 am… Got a few hours of sleep and went to work.

By mid day that Wednesday the 21st, Jenn called because he hit 105.9 temp. I left work and met them down at Children's Mercy Hospital around 3:30 pm. By late evening flashback central was starting to run ramped through our minds. At one point he seemed to become more alert and was moving around. We agreed to stay the night while the staff worked on the appropriate care for us at home and then to be transported. I even still felt at that point that he was going to fight through whatever sickness he was struck with. One of the tests came back positive for Rhinovirus. Of course… there is little you can do to treat a viral infection. Jenn & Parker spent the night in the PICU… the last place anyone wanted to be with the reminder that Brisan passed away in room 11. They put us far away as possible and addressed how we were not going to go through the traumatic steps as we did with Brisan if that started to turn quickly.

Back in August 2014, we met with our care team for Mr. Stinky and our goals were to get through Christmas and his Birthday. Little did we know that we were going to be taken so literally. You know? We sure did accomplish those goals.

Thursday around 2:30 pm Parker and Jenn came home with the transport team. We transferred him off BiPAP to our O2 at the house. He was uncomfortable for sure but still felt there was some hope that he was going to fight his way through this.

The Moments

4 am Friday morning Jenn gave Parker his last dose of morphine and that is when he settled in. He looked like he was sleeping quite frankly. By 9 am or so… that is when his breathing changed. His respers were 2-4 a minute. As our hospice nurse came back out, she confirmed what we were thinking that his lungs were starting to fill up and his brain was going into that survival mode that so many refer to.

At one point when Jenn took his O2 mask off (he was on 10 ml!) to suction his mouth mid morning, I panicked inside because he wasn't breathing normal although he was already doing the no breathing deep sea diver technique at this point.

Once my dad arrived, Jenn crawled up in bed with him and I knelt on the floor next to him. It was around 10 minutes and a few breathes, Parker arrived home with Brisan and welcomed into the arms of Jesus. One of his last breathes he opened his eyes real wide and it brought me off my knees. It was so beautiful to see his eyes one last time but yet so freaky. During this time we took turns listening to his heat beating on the stepscope. It really looked like he was sleeping. It was peaceful.

During those moments we attempted to sing “Jesus Loves Me” as his homecoming was taking place. Right before 6pm, the funeral home arrived to pick Parker up (that is just is weird to say). We didn't want a “bag” or a “sheet” over his face. I decided to carry our boy out of the house one last time. A pivotal moment of sadness instantly set in and I felt like I slowly walked a mile. As I placed him on the cart, we continued to love on him. As they pulled out of the drive way, we wept immense tears of pain with the promise of the joy he is now experiencing. Our friends and family were in the front yard supporting us as we looked up to see Parker “drive away”. There was no way the neighborhood didn't get a gist of what was happening.

THANK YOU!

These few weeks have been filled with community and deep with love for our family. We are overwhelmed with incredible people whom have served our family in a variety of ways. We want to tell everyone THANK YOU for food, donations, and just the assistance you’ve provided. It really does take a small village to pull off the events that have to take place in these small hours of great sadness yet a remembrance of joy that we’ve all been promised. We just are unable to put into words how grateful we really are. The burden of the events and financial impact these things have on a family are quite consuming.

We did have an autopsy for Parker done considering we had more insight from Brisan’s. It will also put to rest any questions that could/ will have been lingering.

In the upcoming weeks, I’ll post Parker’s funeral services on Youtube so for the ones that were out of town and that couldn’t make it, could get a small glimpse of his eulogy and the message that was shared with our friends and family.

You guys are awesome and rock! As we start down this path for a 2nd time feeling like a hobbled wounded solder in battle in the thick of enemy territory, we ask for your continued prayers for us and that our next mission for our lives start to shape up.

“Come on Parker, Come on” we can hear Brisan saying.