Father & Son Trip to Salt Lake City, Utah

Blake waiting to see
Dr Black(Surgeon) & Dr. Holms (Orthopedics)

The adventure started at 4:20am this morning.  Well technically last night.  Becky (My beautiful wife.) organized and packed everything for Blake.  Just getting all the equipment ready to travel is a huge process. Not to mention all the supplies: Blake's food, feeding bags, ferrall bags, drain sponges, etc.  At 4:20 this morning, the nurse held the flash light while Chad prepared the ventilator for travel.  You have to change out the wet circuit and unplug all the cords and put on the dry circuit. We loaded everything into the van, Ventilator, Humidification portable station, and the portable feeding pump oxygen,  and extra oxygen.  It's crazy how much stuff Blake needs for one over night trip. That's why we love our Toyota Sienna Mini Van. Blake enjoyed his breakfast on the way to the hospital via his GJ- Tube. (We will talk about this more a little later.)

We got to Salt Lake City around 9:30am and went straight to the hospital.  Why? Because it's Thursday, of course, and for anyone who has ever been to Primary Children's Hospital, you know that Thursday Mornings are "Blueberry Pancakes". Now, blueberry pancakes are super yummy, However, Primary Children's Hospital adds this yummy buttermilk syrup and it's to Die for. Can you say YUMMY???  We love Thursday Morning Breakfast!!!!

Here is the best Blue Berry Pancakes with Buttermilk syrup.  YUMMY!!!

After our yummy breakfast we went to our first Dr appt for the day.  We checked in to see Dr. Black.  A little background, Dr. Black was the same Doctor that put in Blake's G- tube (feeding tube).  A G-tube stands for Gastrostomy Tube. It's a tube inserted through the abdomen that delivers nutrition directly to the stomach and is approximately 1/2 inch long. Blake had a G-Tube for approximately 6 months. We had to  transition from a G-tube to a GJ tube because Blake kept throwing up and couldn't tolerate any food in his stomach and he kept aspirating into his lungs causing "aspiration pneumonia". Not good.

So now Blake has a  GJ- Tube which stands for Gastrostomy-jejunostomy. The GJ-Tube has two separate routes. One route is delivered into the stomach. The other route is delivered into the small intestines (also known as the jejunum, hence the "J").Because the "J" part of the feeding tube is threaded into the jejunum, GJ-tubes are placed in the x-ray under fluoroscope (this is like a video x-ray machine). The "J" portion of the feeding tube that is inserted into the body is much longer because it has to be threaded through the stomach and then a bit further into the small intestines to prevent it from retracting back into the stomach. It's approximately 10-12 inch.  The nutrition (food) totally bypasses the stomach and directly enters the small intestines. That is why it takes so long for Blake to eat.  It's not just a quick 5 minutes.  It takes about 13-14 hours for Blake to eat. Typically Blake eats while he sleeps and he only eats once a day.

Whew, that was a lot of information. Back to our appointment with Dr. Black.  The reason we had an appointment with Dr. Black was because while we were in Cincinnati March 13 we saw Dr. Putnam, a Gastroenterologist, who performed a scope on Blake.  He found: bleeding, ulcers, gastric erosion in the stomach area, and lots of reflux.  He suggested that Blake get a Nissen Fundoplication, which will wrap the intestine around the esophagus to prevent future reflux/aspiration. AWESOME!!  Dr. Black will be performing the Nissen Fundoplication Wen. June 6th 2012. We are very excited about this procedure and for the opportunities it will open up for Blake.  There is a possibility that Blake will be able to go back to feeding with a G-Tube.  That is super exciting because Blake will no longer have to go to Salt Lake City to have the GJ- tube re positioned with the x-ray machine if it gets pulled out by accident or has other issues.   Instead, Becky and Chad will be able to change the G- tube.  Very exciting!  And the fact that Blake will feel better not having all of this Acid reflux, ulcers, erosions, etc.  This is Very Good NEWS!!!

We had a couple hours in between appointments so we checked into our Hotel.  Blake put on a light show.  He really enjoyed turning on/off the lamps.  It was so fun to watch him play.  We loved the light show. After we chilled a little bit we headed back to the hospital.

We checked into see our next doctor.  Dr.Holms is an orthopedic specialist. We are seeing him because Blake has a scary walk.  Right now Blake has a brace called "Dafos" this brace comes up to Blake's ankle.  Blake was seen by two doctors, one was a resident and then Dr. Holms. They did a couple x-rays. Blake has a beautiful spine.  Awesome!!!  He has beautiful hips. Awesome!!!  The problem is that Blake has "low muscle tone."  This means his skeletal structure is good, awesome, fantastic; however, he does not have the "Muscle Tone" needed for him to walk well.  So he will now be fitted for a new brace called Ankle Foot Orthosis (AFO). The AFO will come up around his calf.  Tomorrow, Blake will go to Shields Orthotic Prosthetic Services where they will take molds of his legs and feet.  In a couple weeks, they will have created new braces for Blake.  Very Cool!!!!  We are not sure how long he will have them or how long he will have to wear them, but for now, we are just so excited he will have some new braces and be able to continue to walk.  What a blessing!