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

Author Archive

Man time really flies. It is so hard to believe that in this past few weeks we have celebrated Parker’s 7th Birthday and Monday is Duncan’s 5th Birthday. It seems just like yesterday we were bringing Parker home from the NICU and Duncan from the hospital. As you all know I go BIG for Birthdays around here. We had a “Jenn style” party for both Duncan and Parker last weekend. The theme was “the Lorax”. I have to say that I think this was one of my favorite parties yet. We had a great time with our friends and family even if there was like 60 people here!

The Lorax Party for Parker & Duncan – 2013

Read the rest of this entry »

Hi all, I know normally I am not the one that blogs but today I am. As I am sitting here in this blizzard watching the snow fall, I am thinking about Brisan and Parker. I often think about what they would be like if NPC was not taking them away from us. Would they be begging me to go outside and play in the snow like Duncan? Would they be watching the TV to see if school is canceled tomorrow? While Duncan is excited about the snow and spending time with Mommy and Daddy, Brisan and Parker really have no idea. But that is just our reality. They don’t even know what snow is anymore and don’t say Mommy or Daddy and have not for a long time.

Brisan and Parker Laughing

I find myself having a hard time dealing with this “reality”. I know in my head that everything happens for a bigger picture but when you are in the forest it is hard to see anything but the tree in front of you. But when you take a step back that is when you can see the whole forest and the bigger picture. I was once told that there is light at the end of the tunnel and it is not a train.

As I have been talking with some friends on facebook, I am slowly starting to learn thatI have to ask for help when I need help, I have to allow myself to feel these feelings and I have to rely on those that have sadly gone before me. None of those are easy for me to do. I am a very planned and organizing person. But let’s face it, Niemann-Pick Type C has a plan of its own and is not organized like I wish it was.

On a good note, we have a new member of the family, Jenna. Jenna is our new personal health aid that is working with the boys. I have to say that she is great with the boys and she loves them as her own. That is exactly what we need. She is always asking us questions, wanting to learn more and more about them, their story and NPC. More that I can say for 98% of the ones in the past.

While I am very sad at our crazy daily life, it for some reason makes me want to fight even harder. This is where we need help. We know that we can’t fight this battle alone. We just can’t. We need your help, awareness is key. If we can save one other family from having to even know what NPC looks like then I would feel successful. I have heard several times lately that I am NOT Super Woman and Mike is not SuperMan. (That also doesn't mean I wont try though.) There has to be some way to make Brisan and Parker’s life better than it is already and also find a cure/ treatment for this monster. That being said, I think we may do some finger painting today with all three boys.

I’ll let you know how it goes.

Last note, “The King has one more move!” I don’t know what it is but I have to trust in him and know that it is all for His glory and Brisan and Parker will and are making adifference in this fight against NPC!

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.

Today I took Brisan to his Pre Admissions Testing appointment. I was pleased to see that all of the kinks had been worked out from Parker’s surgery last week. While we were there Brisan was talking a lot. Over about the past month Brisan has really not been talking unless he is mad about the TV or if he wants a cookie. So it was really good to see.

Speaking of Parker. Parker is doing well. He is wanting to move around more and more everyday. The only problem is that he does still have sutures in his stomach and he is still really sore. Try explaining that to Parker. He does not understand that he can not run around and fall on his port. We do have some concerns however about how he is walking. He is dragging his feet and turning both of them out really bad. We will see about more PT in the next few weeks if it does not get better.

Another big thing is we are trying to get the boys a Home Health nurse to come out a couple times a week for both Brisan and Parker. That would also open a bunch of doors for us to get the boys home OT and PT. Having that at home will also help us with the things that we are having major issues with, the stairs, feeding, bathing, teeth brushing, falling, speech, aggression just to mention a few. The more the help we can get to keep with going the better in our opinion.

What an eventful day. We have been at Children’s Mercy Hospital since 8 am. After getting a DDAVP infusion, dose of Amicar, and a first of the Stults family,  a platelet transfusion. Parker was taken back to surgery at about 1:45 pm. Mike and I talked to our surgeon, Shawn St. Peter after the placement of a Single Lumen Port-a-Cath and a Mic-Key G-Tube.

So far, almost 4 hours post op Parker is doing ok and is stable. He has had some bleeding but not anything severe. He is on some heavy duty pain meds that are attempting to help control this intense pain in his stomach and chest. So he is pretty out of it at the moment. That is a good thing. He has already tried to climb out of the regular bed twice within 20 minutes of being in the room. So we opted for a crib for his safety. He also does not understand why he has a bunch of wires and tubes coming off of him. He is on Oxygen, has Cardiac monitors, is hooked up to an O2 monitor and has several different incision sites and he is not used to them at all!

If we could ask for anything please pray for the bleedings to stop, pain to be managed, and for Parker to get some good rest while he is here. We are not out of danger yet. We will have about 12-14 days that he can still have bleeding complications from this surgery. Plus the risk for an infection as long as he has the Port-a-Cath.

This was not an easy decision to make as a parent. It will be a long, painful road the next few weeks with both Parker and Brisan having these surgeries done. However, Mike and I feel that we have to do what is best for both boys and their Quality of life vs. Quantity. We feel that this is the best decision for our boys at this time.