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

Posts Tagged ‘Dr. Shawn St. Peter’

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.