Monday, July 30, 2012

Keto Kid 2

Well, it has taken me quite a while to post our second day at Primary Children's...I've been a bit overwhelmed.

Our kitchen was a mess for a couple of days after we returned.  There's so much stuff...medicine, supplements, scales, recipes, spatulas, ketone test strips, specific foods, specific sunscreen, shampoo, soap and wipes.  These pictures were even before I went shopping on Saturday.  I came home with plenty more :)

So, on to day 2.  Ben ended up sleeping for approx. 7 1/2 hours that night.  He slept through most of the every two hour interruptions.  I, however, did not.  I think I got about 4 hours total...which is better than it could have been.  Ben started asking for food soon after he woke up.  I tried to distract him with cartoons thinking they would bring his tray in soon.  When it didn't come I asked the nurse when it was scheduled.  She told me it wasn't going to come for another hour.  Yikes!  I had a bit of a grumpy boy on my hands so I had to think of something.  I asked if we could go for a walk.  In our jammies we roamed the halls of the hospital.  A nurse helped us find a live fish tank.  Ben enjoyed it for a couple of minutes and then was ready to move on.  We went and saw the big fish on the track behind the elevators and then I spied the wagons.  I had been hoping to have a chance to put Ben in one of the red wagons the hospital had available.  I thought he would absolutely love a ride.  I plopped him in and he immediately began protesting.  Thinking he would calm down when he started moving, I proceeded to pull the wagon.  We didn't get far.  His crying increased and we were getting looks from people around us.  I had envisioned getting loads of cute pictures of my little buddy in the red wagon but I gave up and continued carrying him down the halls.  Much to our delight, we found an electric train at the end of one hall.  Ben loved it  He got so excited every time it would come around to us.  

These pictures are actually from later in the day when Andy took him down again.  (I had to explain why he wasn't in his pajamas.)

After a couple of minutes he had a staring seizure so I carried him back up to our room.  There was his breakfast on the table but it would have to wait.  The nurses came in and hooked him up to the monitors.  His oxygen was low so they gave him some and he slowly came out of it.  As he was recovering the attending neurologist and several other people came in to talk to me.  They told me that everything looked good...his blood sugar was just a little low so they would look at that one more time and if it was good we could go home!  Wow!  I was not expecting that.  Nor was I ready for it.  I didn't feel competent in the diet at all.  I decided that when Andy came I would take a break and go through all of the material and write down all my questions to be answered before we left.
I snuggled with Ben on the bed and he fell asleep.

He slept for quite a while and I was quietly able to get some things done.  After about an hour and a half Ben woke up and I gave him his breakfast that he had so desperately wanted hours before.  They came in to take his blood and that was not a pleasant experience.

One of the techs gave Ben a little, yellow, bendy guy to keep him happy while she worked with him.

More play time on the hospital bed.

When Andy arrived we both took him for a walk to see the fish...again :)

I was able to sneak in a shower and then took all my reading material down to the cafeteria.  (I must say that the cafeteria there is very superior to our local one.)  The little packets of hummus and pretzels were my fave.  I took my time and wrote a long list of questions and a long list of things we needed to buy.  When I returned to the room I talked on the phone with the woman that was working with us and she told me that pretty much all of my questions needed to be put to the dietitian.  Well, even though my questions weren't answered for the most part, simply reading over the material and writing things down organized it in my mind and I felt a little better.  We were ready to be discharged.

A package came for Ben!

He's singing the Elmo song in this picture :)
 He was thrilled!

One more vitals check...

And then we patiently waited...

and waited...

and waited...

some more...

for them to come take the stinkin' needle out of Ben's hand :)

Another painful moment :(

We finally made it out of there after we filled some prescriptions, signed the discharge papers, and had our meals for the rest of the day prepared and packed.  We stopped by The Sweet Tooth Fairy and picked out some was my first time and it was so fun :)  Then we drove to Sandy and picked up some KetoCal that another family had left over from the diet.
I told Andy on the way back to Park City that I felt so relieved to be done with the hospital but then kept realizing that things had only just begun.  There is a weight on my mind.

Ben is handling the diet well.  He had very little to adjust to.  (It turns out our portion sizes the last couple of months have been pretty close to the real thing.)  Andy and I are the ones that have had our lives drastically changed.  Our focus for so much of the day is on the diet...meal prep, feeding, testing urine, giving meds/ time consuming.  I know things will get easier as we go.  I just need to be patient.
So far, there has been no change in the seizures.  Some kids are affected immediately while others take a couple of months to see improvement...and there are some that see no benefit at all.
We'll be paying close attention to see if it has any impact on Ben's seizures...especially his myoclonics.  Those are the ones we're trying to beat with this thing.

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 :)

Small Moments

I just have a few things to smash together into one know, those small moments that make up life :)

1- This is an amazing moth the kids found on our house

2-  I made pesto for the first time a bit ago.  I've wanted to make it for a long time now but every time I look for basil in the grocery store it comes in packages of tiny amounts and you need quite a bit for the recipes that I have seen.  Well, one day I went to the store and was determined to get enough basil even if I had to buy 10 expensive, little packages!  I couldn't find it at all at first...where I've usually seen it...but in another area of the produce section I happened upon little, live basil plants.  They were still a bit pricey but I bought three thinking that would be enough.
I made the recipe which was super easy and we had it on gnocchi that night.  Andy tried it before I did and he said that it was a bit strong.  I tried it and loved it!  Towards the end of his meal, Andy remarked that it was kind of growing on him :)
Well, we had some left over so I was excited to experiment for the next few days.  One day I put it on leftover rice we had in the fridge (I'm such a carb girl).  That was pretty tasty.  The next day I tried it on a pesto/parmesan crusted grilled cheese sandwich (I added tomatoes) that I found on Pinterest.  It was lovely!  I am hoping to keep these basil plants alive in my little kitchen window sill so I can make this a habit :)
p.s. I know I took pictures of my sandwich (and I was actually pretty happy with them) but they have gone missing...probably from one of the times that one of the kids picked the camera up.

3-  Abby and I had a delightful time last weekend attending the city's "Movie in the Park".  She is a fun little partner.  Andy was very gracious in giving us a girls' night out.  They showed "Mirror, Mirror" which we had never seen.  It was pretty cute.  The end credit song was so catchy (though repetitive) that I went home and added it to my running playlist. 
I need to do more things like that with my kids.  It was precious time.


4-  Monday, I took Josh in to have his cast put on.  He came well prepared with his DS to distract him.  (The first time we did this with the other foot, we hadn't made sure that he had pain meds right before and he had nothing to keep his mind from what was going on and it was a disaster)  So, even though he'd been off of pain meds for several days, I loaded him up with the serious stuff this time and he engrossed himself in the electronics while they removed the dressing.

It was a good thing.
I have pictures and was expecting to be able to share them this time but they are more gruesome than the first pictures we took that I didn't dare post.
Either he had a reaction to some of the materials used or somehow moisture got in, but whatever the cause, he had major blisters.  One that was about 2-3 inches in diameter and a few other medium size ones.  Dr. C. had to drain them with a syringe.  He's also developing the same rash he had on the other foot which is basically tons of tiny blisters.  Consequently, no cast.  Josh was somewhat disappointed but he was okay with it.  The doctor said to help it clear up the dressing needed to be changed every other day for the next week.  I reminded him that we'd be out of town (with Ben at Primary Children's) for the next several days.  He called Home Health Care and arranged for them to come to Andy's parents' home where the kids would be staying.  (Actually, they originally told him that they couldn't go to the home but if we brought him to the hospital where we would be staying they could do it there.  Well, it wouldn't be to convenient to bus him back and forth from his grandparents' home to the hospital but we were prepared to do it.  A few hours before we left town they called and said they were planning on coming to our house that day.  Andy explained to them that we wouldn't be there and that it was already supposed to be arranged for it to happen at the hospital in Salt Lake.  She said she didn't think that could happen since they didn't have a home base there but that they could probably come to Andy's parents' home.  She made a phone call and got back to us saying they would go to the home...well, that's a lot easier :)

5-  Abby had another Hula performance for the city's celebration of Pioneer Day.  Andy thought it was pretty funny that they asked Hula dancers to perform for a Utah Holiday :)  Anyway, she always loves a chance to perform...
Here are way too many pictures...I promise I only put in the absolute best!

Love this one!

Those leis are pretty itchy!

The whole gang

They did awesome :)
Thanks for reading about some of the small moments that have been in my life lately.