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

Archive for the ‘Updates’ Category

I was able to get the “dudes” on the camera last night. Of course they had no interest in what I was doing because one of their favorite cartoons was on, The Penguins of Madagascar! Parker started having some bleeding while he was at grandma Carnes's house this week. Yesterday ARJ Infusions Services came out and did another infusion of DDVAP for both of them. They also will both get another infusion on Monday, their regular scheduled day.

It appears unofficially that they will be going to twice a week infusions. That is our hunch at least. Below is a video of the guys after dinner: (if your unable to view via your email update, click here: http://www.youtube.com/watch?v=zoWaslyYsdk)

In the video as you can obviously see ( ha ha) they are both getting a feed through their GT's. Brisan will surprise us every now and then and eat a whole bunch but we need to supplement his calories. Parker loves to eat as well but we want to make sure they have a full belly before they go to bed. Hopefully that will help them sleep.

You also will notice how Brisan really doesn't like to look down at his food (well cookie!). You have to love the vertical gaze palsy!  Either way we love the little guys! Thank you to all for everything. There will never be an action or material item that could say thank you for the prayers, support, and love you've given our family.

Jennifer stayed the night with Brisan while I went home to gather the heard (dogs). Looks like his incisions started bleeding sometime this morning. They applied some pressure bandages to them.

This morning they were not for sure they were going to allow us to go home today but they just came in and said we could leave. Well of course after taking the pressure bandages off there still was some bleeding. I think we will get to go home tonight. They feel fine since we are local that if an issue arises that we could come back ( I had to giggle at that one!)

Here he is very happy 🙂

Easter was a pretty good day. Me and Jennifer went to church because we were apart of the 11 am service. The message was on Hope. At the beginning of the sermon they had put a picture up of us while one of the ladies from the drama team acted out our monologue about our story. She did a wonderful job and it was surreal to be hearing our story. I hope that it was able to make an impact.

The boys were at Gma's & Gpa's house while we attended church. Typically we go Saturday evening. We had a good lunch followed by hunting for the wabbit! Below is a video from the Easter Egg hunt we had in their back yard. The boys did a pretty good job “wondering” around! HA I think they had fun.

(In case you can't view this video on your email version: http://www.youtube.com/watch?v=CrhfcmcCEWQ)

Well crime scene intact partially… We were up most of the wee hours of the morning with Brisan the “Flinstone Cat” not wanting to sleep and roaming between our bedroom and his. Around 6 am Parker comes up to my side of the bed and not thinking much of it Jennifer goes Parker is bleeding!

Took him in our bedroom and I can not recall the last time he literally had blood from head to toe on his body. All down both legs and arms including his face. The first go around it took about 30-45 minutes to get a clot to stick. During that time Parker turned into Rambo and tried to break loose. Can't blame him but it is frustrating since your trying to get him to calm down so you can apply pressure to his nose.

We put him in our bed and I proceeded to get ready for work. As soon as I was going to leave he blew a big sneeze. Must have been as powerful as the winds in Kansas City this morning! The 2nd gold rush started (minus the gold). That was talking another 30 minutes to try to stop it. At that point we just called the ambulance to head down to Children's Mercy Hospital. There they gave him DDVAP and checked out his hemoglobin. It was low. He is doing OK now after a long morning and early afternoon.

There has to be a way to help this out some way.

Just a quick update on Mr. Parker! We were able to come home Thursday evening. The doctors felt comfortable because he wasn't bleeding which was a main concern before surgery. Parker is very sore and  uncomfortable. It took him about a day to realize that he just can't get up and run around like before because his tummy hurts.

The last few nights have been rough because he wanted to toss and turn but he couldn't. We found a solution yesterday mid morning. Thanks to papa, he has bought the boys each a recliner of their own over the last few years. Now which one belongs to who is hard to decide at this point but it came in very handy!  Parker enjoyed just sitting their with the bottom leg support propped up while he watched his cartoons! Pretty cute! He just needed a remote!

Here is what his tummy looks like with the G-Tube and port-a-cath. Underneath his right breast you see a bump. That is where the port-a-cath location is where they can give injections or take blood. We won't access the port probably for 3-4 weeks. Up by his neck that is where the part of the catheter is located. The below picture gives you a better idea how it looks inside of him. The biggest risk with this is infection. As Jennifer stated a few days ago it was a hard decision to make but we feel it is the right one if they are going to be getting infusions every week. They already are nervous when they do the infusions already. It really is the sticking point of the process that gets them. Heck I'm an adult and I hate that feeling.

Brisan and Duncan are doing good. They are at gma's and papa's house. We're set to pick them up today. Can't wait to see them but this will be interesting since Parker can't really move around right now. Duncan probably will want to come jump on his belly! Brisan will get his port-a-cath on April 7th.

We thank you all for your prayers! It truly is each one of you that lifts us up to the Lord that we're able to get through challenging times.

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.