Thursday, August 13, 2009

Care Goals

I think the care goals written on Brayden's hospital board says it all.

Brayden had an ultrasound yesterday to look at his pancreas, liver, kidneys, spleen and gall bladder. Then he was wheeled to another room to check the placement of his G-J tube. Everything looked good except his pancreas, it was enlarged. Which was no surprise because his blood work was showing pancreas levels were high. He started with levels at 813, moved down to 650 and needs to be close to 200.

Brayden has pancreatitis. The cause for this is unknown.

Right now Brayden is being treated for acute pancreatitis. The GI doctor is looking into whether it could be a chronic problem since the circumstances surrounding our reason for bringing him to the hospital, extreme vomiting, has been a reoccurring theme now for 4-5 times.

The treatment for acute pancreatitis is gut rest for a few days, to be on IV fluids only then introduce food. We know this routine because it is exactly what Brayden has done in the past: extreme vomiting, bloody vomit, hospital, gut rest for a couple of days with IV fluids, pedialyte then his formula, sent home, no vomiting for almost a week, vomiting starts back up, vomiting gets worse and worse, back at the hospital...We have been doing this for a year.

The GI doctor at Fairfax discussed, at length, Brayden's pattern and all of the tests, procedures, medications, we had tried this past year. For better or worse, he thought we had really covered our bases and that Brayden's GI doctor at Children's was doing the same thing he would. Good to hear but not, leaving us with no insight into the ongoing vomiting problem.

The GI doctor at Fairfax is speaking with GI doctor at Children's to discuss the pancreatitis and the history of his vomiting.

Where does that leave us?

Brayden is technically being treated for acute pancreatitis at the hospital. He will continue to have blood work to watch the pancreatic levels and possibly a CT to get a better look. In the meantime the GI doctor will be looking for something to explain the vomiting.

I was brutally honest with the doctor yesterday telling him that we cannot continue the same patten of vomiting and hospital stays. Brayden cannot vomit this much. His life cannot be like this, it is not a way to live and has to be looked at until an answer is found.

We will see what today brings.

On a much light note, Carter and Luke came in for a visit. They actually like hospitals...the cafeteria, playroom, video games, movies, all fun. Jeremy's parents stopped by and treated them to ice cream. Then a surprise visit from one of our pastors Ed Nalle. He talked with us, laughed with us and prayed with us. We have always appreciated his genuine care for Brayden and the family. It was a nice way to end the day.
One the way home last night, Carter and Luke were watching a movie in the car and I was watching the most amazing sunset. The sun was a burning orange/red. It was breathtaking. It was huge. All I could think was about how amazing God is to create such a thing. He really does know what He is doing.
From the highest of heights to the depths of the sea
Creation’s revealing Your majesty
From the colors of fall to the fragrance of spring
Every creature unique in the song that it sings
All exclaiming Indescribable, uncontainable,
You placed the stars in the sky and You know them by name.
You are amazing God
All powerful, untamable,
Awestruck we fall to our knees as we humbly proclaim
You are amazing God
For the song, click here.


Courtney said...

wow, carrie. thanks for sharing! it seems like the dr you are dealing with is wonderful...praying for continued wisdom for them. and continued encouragement for YOU.

Megan said...

I saw that same sunset last night Carrie and was struck with much the same thoughts. He is the God of the universe, sovereign over all and he blesses us in so many ways that we often don't a beautiful sunset. Trust in Him to know the answers for Brayden when you are at a loss. Will continue praying for some kind of new information to provide some answers...

nate and liz said...

Reading you blog is always such an encouragement! Have you heard any of Natalie Grant's songs off of Relentless? I love that CD! Music has such a way of touching our inermost soul, God's way of speaking to the heart... I was talking with a friend going through a rough time in her marriage and she mentioned that she walk around the house singing like a crazy woman. :) Being crazy isn't always a bad thing. Thanks for sharing! Much love!!! ~liz and family

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