Working on that Food

Brayden is officially off the ketogenic diet.  He has been off for a couple of weeks.  We have seen a slight increase in seizures, a bit more frequent and a bit more dramatic...but not calling the neuro quite yet, giving him time to possibly adjust.

With the change in diet, comes changes for his GI system.  Brayden's GI system can be a bit temperamental.   We are working towards him becoming more regular, if you get my drift.  And we have had to give him some help with moving things along...sometimes it's not so pretty.  Oh, he can be so miserable if he is not regular and too many days pass.

The big goal for his food is not only to handle being off the ketogenic diet but to increase the rate of his food.  For over 3 years, Brayden's food runs at 42 ml/hr and that is slow.  His food is running constantly and we are still not getting all of his food in him in 24 hrs.  Between riding the bus, activities at school, moving him or anytime he needs to be unhooked from food, we are just not getting it done.  And every calorie counts. I am trying to increase it without causing an increase in vomiting (he is fed into his j-tube but it still can aggravate him enough it cause vomiting, even if he does not vomit the food).  I increased to 43 ml/hr a few weeks ago.  Last night I increased to 44 ml/hr.  My practical goal for his rate is 45 ml/hr...the pie-in-the-sky goal would be 50 ml/hr.  Any mom who handles those feeding pump rates knows just one number up or down can be a dramatic difference.

Yellow Puss is Never Good

Brayden's snow days were not as exciting as Carter and Luke's.

One morning while changing his diaper, I felt something wet and slimy...never a good feeling when changing a diaper.

A quick assessment and I realized it was not coming from his diaper at all.  His incision on his hip was oozing.   It was oozing yellow puss and irritated all over.  A little clean up and I could see a hole in the incision were the puss was coming out.  And it was really bothering him.

I called a friend, who in recent years became an expert on her daughter's many incisions and infections.  She talked me through what to do (Brayden and her daughter also share the same ortho dr).

Things were looking better.

The next morning, things looked worse.  So I called the doctor and we (we, as in, I had to take Carter and Luke with us because of canceled school, much to their chagrin) headed to the office.

The doctor got a culture, cleaned it out, put on a little silver nitrate and bandaged him up (with a prescription for antibiotics).   Oh the pain he was in when she digging into the incision to clean it up.  I know Brayden has an incredible pain tolerance so when he was hurting so much that it was a silent scream, I knew it was serious pain.  Thankfully he quickly settled and relaxed once we got in the car, with a huge sigh on relief to get out of that doctor's office.

It is starting to look better but will check in with the doctor later this week.

Seizure Dog?

Did our dog really miss her calling?  Was she really supposed to be trained as a seizure service dog, instead of a hunting dog (Jeremy does say she is a great retriever in the field)?

I have heard stories about those who have dogs that alert them to seizures but I have never actually seen it.

Until tonight...
Jeremy sitting on one couch.  Brayden in the big chair.  And I was on the other couch, working on the computer.  When the dog, started pestering me with nudging and whining (kind of doing her emergency potty dance).  I tried to ignore her.
I looked up and Brayden started going into a seizure.  I quickly jumped up to tend to him.  The dog circled around and got right next to Brayden, acting very anxious.
Brayden's seizure stopped and she plopped down on the ground to chew a bone.

Jeremy and I both were in amazement that the dog seem to be fully aware Brayden was going into a seizure (before we could see it), tried to let me know, showed concern and immediately settled down once Brayden was fine.

Shocked she did it.

We forgot to tell the dog

Brayden was at Jill's House for the weekend.

One has to worry when the house is a little too quiet (with three boys and a dog...too quiet is never quite good).  I did a quick little walk around to look for the dog and found her.

She was sitting outside Brayden's room.  Just sitting quietly in front of his doors.  She missed her regular morning check on him.

Then Brayden came home and she found her place.

Always right in my way, right next to Brayden.

One happy boy with a lot to say

It is always amazes me how my non-verbal boy can still say so much.

It is always amazes me how much my boy can understand what is going on around him.  Don't let those big eyes fool you, he totally knows what is happening.

Like Friday, we told him that we would be heading to Jill's House for the weekend but first he had to go to school.  And he "talked" about it all day.  It seemed like he needed to tell (or brag) to anyone that would listen; he was going to Jill's House.  His sweet little roars of excitement and expression.

Once again, he enjoyed his time at Jill's House.  Time with music, in the pool and seeing the therapy dog (who is becoming his regular buddy and how cute is this dog in the wagon?!).  There was time making crafts and hanging out.

Oh how much I love to go pick him up.  I miss him terribly and when they wheel him out, all I want to do is scoop him up and squeeze him (but I don't because he is not a fan of the squeezing...).  Carter and Luke there to greet him this time.

But what is quickly becoming my favorite part of Brayden's stay, is listening to him "talk" all about it.  He chattered all the way home and then hours after.  He had so much to say about his time.  Full conversation about it.  Each time he has come home from Jill's House he talks and talks.  And I can listen to him for hours!

 B Jills House from Carrie Jenkins on Vimeo.

Not for the Winter Olympics

Ice skating is not Brayden's calling, in any possible way.  He may like the music played during the performances but to tackle the ice on his own, or even with help, is not going to happen.

So what to do when the driveway looks like this...

Our ice storm did a number on our driveway, no matter what Jeremy or I did to try to melt it away.  It was inches thick with ice.

Brayden's bus comes to the end of our driveway but there was no way to get Brayden to the end of our driveway safely.  Can you picture a runaway wheelchair, hurling down the icy driveway?!...not pretty, not at all.

So an impromptu drive Brayden to school, which is not so impromptu since it is 20 minutes away.

However, Carter and Luke loved to slide all over the ice, too much fun for them!

Trapped

What a winter this has been.  Many, many snow and ice (more ice than snow) days where we have been trapped at home.  I am pretty sure the boys have been home more this winter than at school.

At first I like snow (or in this case, ice) days.  It makes the world stop.  All activities are canceled and we are not running around trying to get from place to place.  Many days we just sat in the family room, around the fire, playing games, reading books and watching a movie. 

But then the days after the snow days are spent making up for those days we were trapped at home.  Three of Brayden's appointments were changed in January because of the weather. The boys were swamped with work (especially Luke, the 3rd grader...had over 2 hours of homework, too many nights).  Brayden is way off his routine and going back to school or really just being out of the house can get to him.

This week just being in or out of the house is getting to me.  I have moments of feeling trapped.  Trapped in this hectic routine.  Trapped in the 30 miles radius of our house.  Trapped in the car, i.e. spending over 2 hours in the car for a 20 min doctor appointment.  And please tell me that other people's cars look like they live out of them, at any moment you could find traces of meals, homework, games, change of clothes (and we are still looking for that one shoe, some how some one's oldest child left the gym with only one shoe).  Trapped in the never ending medical needs of Brayden...confusion with insurance, medical equipment, his orders, his nutrition, PPL (no need to explain PPL, if you know what it is then you know what a pain it is), etc.  I have spent more time talking to complete strangers than I do to my friends.  I was on hold with the hospital for over an hour for the second time and I didn't dare hang up because I didn't want to get back in the queue again.  And oh my goodness, can I please expedite the pharmacy refill phone calls, for some reason this tedious task just annoys me and then I am at the pharmacy way too much...I frequent there more than any other place.

I like routine, in fact I enforce a routine in our house.  Order and routine is my happy place.  But I can get trapped in the routine.  Routine of every moment being about my children, their activities/schedules and their needs, it has been all consuming and I really don't see a practical way to cut back.  Lately the routine has felt overwhelming, like I am not doing enough as their mom, mostly because I feel spent and grouchy...we all know a grouchy mom does not make for a happy house.  But even the idea of breaking our routine or doing something feels like too much effort.

I need a vacation (preferably some place that does not have giant icicles hanging from the trees).  But then the idea of a vacation seems impossible.

I know these feeling will pass...in the meantime, praying for warmer weather.

Last step on the Keto Diet

Brayden is in his final week of the ketogenic diet.  The diet has been life changing for his seizure control.  The keto team has been our guide for almost four years (it would be 4 yrs in April since he started the diet), so over half his life.  I feel a little lost because they would take the lead in his medical care...most decisions would be made through the ketogenic team or having them at least consult.  We saw them so many times and many emails.  Brayden's health was closely monitored and watched...and now I am not sure who should do that.

Thankfully the wean off the ketogenic diet has been relatively smooth.  This last step down has been the only time we have seen an increase in seizures.  The increase in seizures have mostly been in the evening, close to the next medication time.  And we have only had to use a diastat once.

Last week was long after 3 appointments (and Jeremy was out of town for the 4th time in January) and the driving, lots of driving.  Brayden's GI doctor is helping us navigate the best nutrition route for Brayden.  Brayden GI system is not a big fan of change and his does not absorb things well...and through that continuous J-tube feed.  I would like to increase the rate on his feeding pump because he is hooked up all day and some days we have a hard time finishing his food...and in his little life every calorie counts.

We also saw Brayden's neurologist.  Brayden has been with her since he was just days old.  And frankly she was the one who had to break the hardest, worst news to us in those early days...so we know her well as she does us.  We discussed Brayden's seizure medications and adjustments off the keto diet.  Thankfully no major changes yet but we are armed and ready, if/when needed.

A lot seems to be hinging on Brayden's appointment in March with the Bone Health Clinic...hopefully his bone will start looking better than butter, much sooner than later.