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

Posts Tagged ‘Platelet Dysfunction Disorder’

If all goes well we should be coming home tomorrow afternoon. That of course is a bold statement but Parker appears to be improving. His hemoglobin level is 9.7 and his hemocratic level is 30 (H&H). When he was at his low point his hemoglobin was like 6. They also have him on antibiotics which they need to observe for 48 hours before they can release us if he is doing better.

They are moving Parker out of ICU to the PED's floor which is more comfortable than were they are at now.

Yesterday was our last day for the NAC drug trial but unfortunately isn't our last day here. Early yesterday morning both boys started throwing up. They took turns every 15 minutes it felt like. After 3 sheet changes we made it into phlebotomy for their blood work.

We were essentially done after eating breakfast; well the boys didn't eat or show any interest. While in the lobby of the PED's clinic talking with other Niemann-Pick Type C (NPC) families Parker had a nice projectile vomit! After that moment he just became more pale than he normally is. Dr. Porter saw him and he was instantly concerned. We brought him back to an examination room where they think he had some type of seizure we didn't catch that made him unresponsive to what they were doing with him. We also found out we were suppose to leave Friday evening not Saturday.

During that time Jennifer's family (Uncle Jim's sister Tammy and family) drove up to visit but I was in the lobby with them during that time when Parker was not Parker. I do remember glancing in the room without knowing what was happening and thinking that Parker didn't look right. We all know Parker how if he thinks your going to touch him he responds!!!!!!!!!

Dr. Porter and Dr. Holmes felt that the floor they had him on where Dr. Porter does his protocol work for NPC, wasn't suitable to watch him properly. So they moved him up to ICU on the 3rd floor. At this point it was about 9 pm EST and poor Brisan hadn't even taken a real nap all day. He also was vomiting but he didn't act like Parker did (Brisan seems to be doing well this morning as I write this).

The biggest concern after getting Parker into a room for testing was why his hemoglobin was so low. It was a level 6 which in adults we would be pretty lethargic and non responsive.  His heart rate and pulse were up and his blood pressure was low. The question that remains is where is all the blood going? Jennifer updated me this morning that they gave him a blood transfusion and he is now up to level 9. She said he isn't a 100% but appears to be improving from the low points over the last 24hrs.

We have a scheduled plane ride tonight at 6 pm EST but we are a 100% sure that isn't going to happen. I would suspect maybe Monday we could come home (???). Thank you for all your support and prayers! Truly it is your support that makes things better because alone we are not capable of producing such comfort on our own.

Isaiah 41:10 ESV
fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.

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.