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

Archive for the ‘Surgery’ Category

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.

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

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 🙂

So far so good for today for Mr. Brisan. Pretty similar story to Parker’s surgery but today went very smooth per Dr. St. Peter. Brisan had his port-a-cath put in just like Parker did exactly two weeks ago today (April 7, 2010).

The morning started off well. He was such a trooper when they had to stick him for his IV to give him his DDVAP & blood platelets.

Brisan is currently resting and has really been asleep the whole time since post operation recovery. He had a small nose bleed after surgery when one of the nurses went to suction his nose out with all that snot! He moved and it got him!

Thank you for all your prayers and thoughts.  We are hoping that this makes the anxiety and a piece of our life slightly better with the infusions.

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.