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

Archive for the ‘Bleeding’ Category

Parker and Brisan are doing better. Parker seems to be walking in an improved state.  Wednesday Duncan decided to jump on the couch and broke Jennifer’s nose. She isn’t feeling well and has an appointment with the ENT on Monday to see what can be done to resolve the issue. She posted the x-rays on her Facebook profile page.

April 21-24 we will have our last visit to the NIH for the NAC drug trial. That Thursday will be used to provide insight into Brisan’s sinuses and polyps along with the finishing touches of paperwork / examinations they will perform. Nothing major expect 14 tubes of blood! In May we will start Zavesca back up but I am sure we will talk with Dr. Porter more about it to get his insight.

Brisan and Parker’s port-a-cath sites are looking good. Monday will be the first time they can access Parker’s site for his infusions. They also took Parker off AMICAR and gave him another drug in its place.

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.