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

Posts Tagged ‘G-Tube’

Brisan at CMH 2-18-11

On Saturday February 19th Brisan returned home from Children's Mercy Hospital. Jenn had taken him in on Wednesday evening with concerns form our carousel & his school nurse along with ours that something was going down. He had puffy cheeks, feet were swelling, and his abdominal area was pretty hard. Back in September, these were similar things that took place. We wanted to be cautious and even more proactive to prevent him from going into distress.

Jenn had asked for them to culture the inside of his g-tube hole but at the given time the consciences was that might not be the problem. Over the next day it did grow and sure enough it was another Staph infection. Along with that he has an upper respiratory infection of some kind going on to.

He is at home resting and appears he will be making a recovery with the antiobotics and game plan they've set fourth for us at home.

*Should be posting Parker & Duncan's birthday pictures soon! Also a news video of our family from a few years back.

On Monday Brisan was having troubles with his seizures and his right eye started to look funky again. I think we might buy him an eye patch so he can be a full time pirate if need be. Here are a couple videos we took last night. One of Duncan being silly and a complete cheese ball saying his name, trying to count, and how he has his underwear on backwards.

Also have Brisan getting his treatment done on his G-Tube site. He has a fungus around it and the skin is pretty broken down around the area. You will see we have him in a “onesie” that we cut a hole above his G-Tube. The onesie is so he won't “play” with his diaper as much but it totally gets in the way of doing his feeds/ medicine. This is the new regiment minus the cleansing wash we have to do recommended yesterday by the doctor. Interesting enough Medicaid paid for most of the supplies but something little that typically would be covered they did not. This is messed up with no private insurance…well at least affordable health insurance. We know the future will be better at some point with this issue but we have to “move along” as needed.

Last week was a very busy week. Brisan and Parker both started physical therapy at Children's Mercy Hospital. It is kinda of funny that they “started” when we went almost two years ago and told us that “they didn't know what they could help us on” and that “oh…Medicaid will pay for these for visits”. HA…that wasn't the case with Medicaid. The good part is they are getting additional therapy. That is what matters most.

Also they met with their new neurologist. They started the boys on a cataplexy drug this week as well which is one pill at night. It should help manage when they lose muscle control and fall. She also consulted with Dr. Marc Patterson on resuming the boys on Zavesca. So that will be started up again very soon! That stuff is pretty expensive (like 190,000 for both of them). It will be interesting when we will have to find new commercial insurance at the end of the year.

On Wednesday August 11th, Brisan and Parker had a minor surgery to remove the granulation tissue around their G-tubes. Starting next Wednesday they both will start school. For Brisan it will be Kindergarten! Big day for the big birthday boy this month. On the 27th he will be 6!  We still can't believe it!

Jennifer's Dad Tim purchased a swing set for the boys. Last Sunday we started putting that monster together! Now we know Brisan and Parker probably aren't going to be able to enjoy it like more traditional kids their age but hopefully they will find something they will enjoy. Duncan probably will! The neighbor girl was telling her mommy that “mommy they are building my swing set”. HA

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.

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.