Wednesday, July 25, 2012

Keto Kid

So, I'm sitting here in Primary Children's Hospital in Salt's almost midnight...Ben is finally sleeping...just since 11:00 p.m. and I want to tell you the story of our day with (hopefully) mostly pictures :)

Heading into the Hospital
Ben made sure he had all his ducks in a row while we waited at admissions to be shown to our room.  (He had found these the night before at Merill and Nancy's house and wanted to bring them along to the hospital)  
This is where we are sounds rather "traumatic" but it's really a very nice place :)

The day's just starting Dad!
 When we first got to our room the nurses did their thing getting him all set up in the computer and stuff and getting some vitals.  Then the Keto Expert came in and taught us how to do this thing.  It was quite the education, lasting quite a while and intimidating trying to remember and keep straight everything we're going to need to be doing.  Honestly, it's not a walk in the park.  It involves administering powder forms of about five different supplements daily (in addition to his regular meds which have to be switched from liquid to powder and then disolved in water), recording weight, ketones and food given, collecting and testing urine samples several times a day and then the big one, weighing to the tenth of a gram, measuring, calculating, and feeding these meals to Ben.
As I've mentioned previously on the blog, we've been kind of doing this at home for the last two months...just giving him the foods that he could have on the diet.  I've been in communication throughout that time with the woman teaching us the diet today.  She told me that our family has done more preparations at home than any other family they'd worked with.  She was impressed with all we had accomplished already (she was positive that he was already in moderate ketosis). Later, she introduced me to the Dietitian as the "poster mother" for the ketogenic diet.  I don't want to toot my own horn, but I must admit it made me feel pretty good. :)

Ben was not a happy camper while Andy and I were being taught so Andy ended up taking him out and missing most of the lesson.  I'm going to have to fill him later:)

The nurses came back and did more stuff.

He was pretty happy with the little, red light on his finger!


Checking out the leads on his tummy

Ben was doing great and everything was fine until they came and stuck the IV thing in his hand.  Ben has never had very good veins and so phlebotomists always have a hard time sticking him.  Andy was down getting something to eat at the time so it was just me and Bubba...he screamed the whole time.  Andy came back just after they had finished up.

Even though Ben didn't fully recover from his noon time IV drama until about 5:00 p.m. (every time he would look at his hand he would start crying and every little movement seemed to set him off...anyone that came in to do anything he didn't want to let them touch him) one thing that did distract him for a little bit was the moving fish down on the first floor by the elevator.  While we were up in the room he kept signing "fish" to Andy to get him to take him down.  He got a few trips out of him :)

I think we had just told him "no" to something.

When he finally calmed down and relaxed fully he enjoyed playing with his new cars...

as a matter of fact, he calmed down so much that he didn't even wince when they came in to do a finger prick later.

"Now I have something on both hands."
 With the first test of his urine, the nurse said he was already at a point that it usually takes a couple of days to get to in the hospital.  I'm hoping that what we've done at home will minimize the adjustments he needs to make and cut down on the time spent in the hospital

It was so cute how Ben just held that left hand out and babied it all day long.  They had just brought his dinner in and we told him we were going to bless the food.  He immediately folded his arms and closed his eyes.  Isn't that so sweet how he's placed his arm?

More play time on the bed.

Checking out the pulse ox on his toe.

We only had one more slightly grumpy moment when he was lining up his cars right on the edge of the bed and I kept moving them away from the edge so they wouldn't fall.  He is quite particular about where he wants things.  Bless his heart!  He's such a sweet little angel and, like everyone predicted, he's got the nurses wrapped around his finger.
Andy went back up to his parents' house around 8:00 to help get the other kids to bed.  Thank you Merill and Nancy for helping so much with them.  It's so nice not to have to worry about how they're doing all day.

Well, Ben just slept through a vitals check.  They'll be coming in every two hours to either take vitals or blood.  I guess I better try and get some sleep now.  Hopefully I'll be able to post Day 2 tomorrow night.
Sleep tight "Benji Bry".

(Thanks for reading my super long captions...that is if you did read them :)


  1. I read every one! What a little trooper. Bless his little heart--and yours. You are in our prayers.
    I see Ben has his "Go, go" blanket with him. Did you bring the ladybug, too? : )

  2. Sounds like a great start!! We are at home rooting for you all. Of course I was up early to check the blog and see what was going on with our 'Baby Ben'.

  3. Hang in there! This is so tough, but if it helps it is totally worth it! I do not envy you at all, but I probably understand exactly how you feel. I am glad that Ben seems to be doing so well. We have made many trips to see the fish, one of the things I actually miss about that place ;) Good luck!

  4. You know you get the title of super mom right? You are amazing and it sounds like Ben is doing fabulous as well. I'll keep an eye out for updates as the process continues. :)

  5. oh, ben! he really is a charmer. :) way to be the poster mom for this diet, aims! my thoughts and prayers are with you guys. love ya!

  6. He is too cute Aimee. Looks like he is a real trooper!