Thursday, November 13, 2014

BiPAP sleep study

It was the night for another sleep study, this time with the BiPAP machine on.

Arrive at 7:00 p.m.  Jeremy and I running Carter and Luke back/forth; I get Brayden ready then Jeremy arrives with Luke for me to take the boys home for the night while Jeremy and Brayden hunker down at the sleep clinic.

I work on all of Brayden normal night routine while the tech is setting up (poor woman did not seem warned/prepared for how involved Brayden is).  Then comes time to put on all of the monitors.  Wires and monitors on the legs, arms, chest, neck, face and of course all over the head (and wrap his head really well so the monitors all stay in place)...and we haven't even put the BiPAP machine on yet.

Brayden "tolerated" the placement of all the monitors wires.  By the time we needed to put on the mask, he was exhausted from his effort and his nighttime medications were kicking in.

Oh how I hate to put him though these things.  We cannot explain things to him, we try but do not know how much he understands; other than he is being tortured and mommy and daddy are there.  How can we tell him that is to help understand what he needs to sleep, his sleep quality is so poor that he needs this...

He looks so pitful.
He did sleep relatively well.  The tech came in several times throughout the night to make necessary adjustments.
The study ended early in the morning and Jeremy brought him home...time for a shower to get all the junk out of his hair (the same stuff from EEGs) and all of the tape residue off his skin.
In a couple of weeks, we will find out the best BiPAP settings from this sleep study.  Then his machine at home will be set and he will start using it at night.

Friday, October 31, 2014

In the Village

There is nothing more Brayden loves than to be with friends and family, outside, being pushed around.  Could Halloween in the historic Waterford Village be any better?

Thursday, October 30, 2014

Fall Fun, Special Ed style

Parents were invited to the classroom for some activities.  I never quite know how this will go since Brayden can get upset that I am there, because he wants me to take him home.  Thankfully he was very content that morning.
Try to toss the bone in the basket.
Make a spider web.  How cute is this wrapped around all of the wheelchairs?!
After the fun was done, it was time for Brayden to go in the stander.  I cannot believe how well he does it in and how ridiculously tall he is.

Wednesday, October 29, 2014

Brayden does Trunk or Treat

and he will take candy, please.

We all headed out for a trunk or treat.  First, we had to take some pictures.  When I got home I realized Brayden's little cousin put his hand on Brayden's lap for all of the pictures...such sweetness!
Luke could only stay for a little bit since he had to leave for football practice (thus the football "costume").  Luke did not want to miss out on any candy so Brayden was happy to finish up for him.  He really did like to hold the candy and he did get quite a bit (too bad eating any of it is not in his future).

Sunday, October 26, 2014

His stay at Jill's House

As always, he loved it.  Especially the pool.
As we were picking him up, his Uncle Matt winding down from his run at the Marine Corp Marathon.  Jill's House raised a good bit!  Brayden and his buddy made his Uncle Matt a special card.
And of course big brothers were there to help.

Friday, October 24, 2014

Jill's House Marine Corp Marathon

My brother, Matthew, is running the Marine Corp Marathon (he has run other marathons in the past) as part of the Jill's House team.
A few weeks ago he was talking about the pre-race dinner at Jill's House.  I quickly realized that was the weekend Brayden was scheduled to be at Jill's House so we were able to join him for the dinner.  My brother, his wife, Brayden, Carter and I rolled into the Jill's House.  Race is Sunday!
After the dinner, I stayed to get Brayden ready for bed (he was so relaxed but ready to sleep) while the others waited in the lobby...apparently supervision is required because here is a text I got while working with Brayden and the Jill's House nurses...

Tuesday, October 21, 2014

So we have to make this happen...

The BIPAP machine was delivered.  The goal is to get him comfortable with the mask over the next couple of weeks; practice wearing it, so that when he has another sleep study in a couple of weeks he will not be to resistant to wearing the mask.

HA!  Our best bet is that he gets a lot of medication at bedtime so we will put the mask on once the meds start to kick in...I did not tell them that we have been working of brushing his teeth for 7 years...he is not a fan of things touching his face for any reason.

He will not wear the mask at night until we get the results of the next sleep study.  That study will find the necessary adjusts for air flow with his BIPAP.

Friday, October 17, 2014

Sleep Study Results - He runs a Marathon

Well, we knew Brayden's quality of sleep was poor but today we saw it on paper.
  • The sleep study showed, 29 awakenings.
  • Only 3.4% of his sleep was REM sleep (the good quality deep sleep).  It should be at least 30%.
  • 435 episodes of oxygen desaturation where his oxygen dropped by more than 3%.  Also, his oxygen rate varied from 68% - 98% during the study, it should really only be in the 90s.
  • Lots of other numbers that show he has poor sleep.
  • The doctor basically said that he runs a marathon every night, his body is working really hard trying to breathe properly when he is sleeping.
So technically during sleep, Brayden has:
  • SEVERE Obstructive Sleep Apnea.  Not obstructed by his tonsils and adenoids because he had them removed years ago.  He has very low muscle tone so his airway collapse when sleeping and he also has central sleep apnea where his brain is not telling him to breath all the time (just very brief episodes).
  • Hypoxemia - poor oxygen flow in his blood because of poor breathing while sleeping.
  • Sleep Related Hypoventilation - not quality breathing and getting rid of the CO2.
Brayden will be put on BiPAP for sleep.  We will introduce it to him for the next few weeks.  Then go in for another sleep study for them to properly adjust the best numbers/rate on the BiPAP.  The equipment company will be calling us soon to set up time to deliver the gear.
Regulating his sleep improve his seizure control, weight gain (minimize it please) and basically improve his quality of life because he has been quite tired for sometime.  It looks like it will take a couple of months to adjust and get to where he needs to be.

Tuesday, October 14, 2014

You will NOT take my picture

No matter, how many times you try to make me smile.
Thus the reason we have never purchased Brayden's school pictures.  But we do get to see the proof...for a nice laugh at his stubbornness.  I could just squeeze that face!

Friday, October 10, 2014

His face on a school morning

Even though he doesn't speak words, his face can say it all.
His nurse sent me this picture when he riding the bus to school.

Saturday, October 4, 2014

Does Brayden like the Fall?

Not sure he is a fan yet.  Trying it out with pile of leaves on a windy day.

At least he is not trying to tolerate fall at football...

Tuesday, September 30, 2014

Sleep Study, who really sleeps at these things?!

About four years ago Brayden had a sleep study.  He used an oxygen through a nasal cannula for many months to help him sleep.  Then he had his tonsils and adenoids removed.  We slowly weaned him off oxygen for sleeping (the oxygen still makes appearances for some seizures, thankfully not too often).

Since the summer, we have noticed he was having troubled breathing during his sleep; snoring, labored at times and high heart rate for being asleep, not to mention he has been incredibly drowsy and napping a lot during the day.  We spoke with Brayden's pediatrician and neurologist, both suggested it was time for another sleep study.

This was the night for the sleep study.  Jeremy and I were not sure it would be the best timing for him.  On Friday, he had his first bone infusion and throughout the weekend he really struggled with temperatures and bad seizures.  Monday, I still sent him to school since he was acting better and we needed to meet the wheelchair guy (that is another post).

Jeremy was off at football with Carter and Luke while I checked Brayden in for the sleep study, a clinic in Purcellville this time - no drive to Children's.  When Brayden and I arrived, the tech tried not to show his wide-eyed look when seeing how much stuff we brought...for just 12 hours.  But we need a lot to get him ready for bed (machines, meds, etc. for bedtime).

I did my part in getting Brayden totally ready for bed, then it was time to start placing all the wires.  Oh it was time to place all the wires, literally from head (lots of the head) to toe; and we all know how much he "likes" to be touched.  We had to move him over to his chair since it was too difficult to do it in the bed.  He tried to protest but was too tired.

Brayden did well until the gauze was wrapped around and around his head; he was not a fan.

I left the sleep center and Jeremy stayed the night with Brayden.  Brayden had trouble falling asleep, trying to find comfort and/or figure out what in the world was happening.  He finally slept, not sure how well...but I really didn't want him to sleep great so they could see why he does have trouble finding quality sleep.

Brayden woke early this morning and Jeremy brought him home about 6:45 am.  The first task once home was to shower and get all the gunk off...still working getting off all the tape stickies.

In a few weeks, we had back to meet with the doctor to discuss the sleep study results.

Monday, September 29, 2014

The 5K

Race Day!  For three months I have been working up the courage to run a 5K, to push Brayden.  I signed us up and then recruited anyone I could for support (running and cheering).
Our amazing group, missing a hand full of people and had some that couldn't be with us but signed up as virtual runners, a total of 35!  Lots of love to this crew!
A very early start, getting Brayden up and ready means we have to get up quite early.  But no worries, he slept (and slept through most of the morning).  The morning was truly so much fun.   Lots of excitement and joy.
The course was a loop around Purcellville and on the W&OD trail.  I had help in pushing Brayden, my lovely assistants, Jenn and Cindy, my sister even jumped in for a bit.
 The race started.  Carter and Luke were off, determined to crush this 5K.
I had help in pushing Brayden, my lovely assistants, Jenn and Cindy was are amazing friends, my sister even jumped in for a bit.

The race went by extremely fast, it almost felt like we didn’t even run that much.  We made it to end.

Luke really did crush the 5K.  Friends and Family were waiting at the finish line. The first runners started to come in.  In the pack was a little green runner with white hair.  It was Luke!  He came in 6th overall, 1st for 1-15 yr olds and finished in 22:46.
Carter was not too far behind, apparently he made a pit stop to toss his cookies from running so hard.  He finished 10th overall, 3rd  for 1-15 yr olds and finished in 25:46.
Crossing the finish line with smiles and still having fun.
Everyone did amazing!
My brother and Jeremy's dad
We received our medals and other fun treats.
How did Brayden do?!  He enjoyed every second of his nap...pushed on a cool fall morning, puts the guy right to sleep.  He was peaceful.
These three cuties went to preschool together, love them.
We may have to try this again...

Let me tell you how all of this started...God planting little seeds along the way that lead up to the race.  Placing several friends at the right place at the right time.

Several months ago, my wonderful friend Susan hosted a yoga class at her home.  I went, looking to try it, hoping to get back into working out (I haven't done much in several years).  Turns out, I love yoga, still do it.  Then a couple months later, a fabulous gal, Cindy, set up a weight-loss challenge amongst a big group of friends.  I signed up for the challenge, to motivate me to get back to working out.  A fear of public humiliation is a great motivator when the challenge included weigh-ins.  I did get back in shape.  The challenge ended and Jeremy challenged me to look into this Ainsley's Angels race that a friend forwarded him information about.  Ummm, I have NEVER run a race for anything.  In fact I loathe running, I will try any other work out.  However, this could be for Brayden.  There is nothing more he loves, than to be pushed around.  How was I going to run a 5K, let alone push Brayden and run?!  I was contemplating race for a couple of weeks, I truly was terrified to try.  I ran in to an old friend (whom I rarely see and basically just see through Christmas cards over the years), Jen, while out shopping one day.  She was pondering new kitchen chairs, while I rambled on about trying to do the 5K.  She gave me such encouragement to do the 5K.  A couple of days later I signed Brayden and I up.  Then I sent out emails and posts about the Ainsley's Angels race.  So many wonderful friends and family joined, supported and sent amazing encouragement.  And I had several friends offer to help me push Brayden.  I truly felt blessed to finally be at the race, not nervous, feeling lots of love and excitement.  All of the past several months, leading up to this day.

Now I still need to learn to like running...I am doing better, I am learning to tolerate it, if I have a little goal for each run.

And a big Thank You to EK Screen Prints who made and donated our team t-shirts!