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!

Friday, September 26, 2014

First Bone Infusion

One long day with a boy that handled it all so well.  Brayden's first bone infusion, pamidronate.

An 8:00 a.m. arrival at Children's, we arrived quite a bit before 8 because we, for once, had no traffic, and had to wait till 8:00 before Brayden was checked in.  We were taken to a small room with another family, also there for infusion.  I quickly realized that they did not plan for Brayden to have a bed but to be in a recliner or his wheelchair...there was no way he can sit in a recliner nor sit in his wheelchair for several hours straight.

So the waiting began.  We waited for a bed to be delivered to the next room for Brayden.  Once that arrived we waited for the doctor, she ordered the incorrect dosage for his first infusion.  Then we waited for the pharmacy to make and deliver the pamidronate.

In the meantime, I talked to a teenager and his family that were waiting for infusion, they knew this routine.  He had done it many times and was willing to answer my questions.  It was probably the first time I was able to actually ask how things actually felt for the patient, not a doctors observations but straight from the boy.  So I seized the opportunity and asked how the infusion felt going in, how he felt during it, after, etc.  He explained that the infusion itself did not hurt, the first couple of infusions he did get a fever and aching, but nothing terrible.  Brayden was given a big dose of Motrin before the infusion to help.

Then came time for Brayden's IV.  Brayden has always been a hard stick, frankly this is one of the hardest things we do with Brayden.  They tried to get a line and did not so they called in the IV team, a team effort and they got a good one.  The first time he has had an IV in his bicep.  Brayden was an all star when they were trying, he did not fuss, he cooperated and barely flinched...like an old pro.

More waiting and the medication for the infusion arrived.  It was a tiny little bag, not what I expected to be given over 4 hours but was told the pamidronate is some potent stuff and goes in very slowly through his IV.  The medication was started around 10:45 a.m.  Brayden was comfortable in the bed.  Comfortable enough that he slept for almost 2 hours of the 4 hour infusion.  He had to catch up on sleep from middle-of-the-night party he had last night (wide awake for too long).

Throughout the infusion, they checked his temperature, pulse ox and blood pressure.  He looked good every time.
The last hour, Brayden was restless (all of us were).   He needed a bit more attention.  I was happy to lay in bed with him; a little Mickey Mouse, massaging his legs, scratching his head, helping him sit up...trying a little bit of everything to help him through the last bit.

The infusion was complete, Brayden did well.  The only trouble came when time to remove the IV and the tape had to come off, he was not pleased and let everyone know it.  He calmed down and we headed home around 3:30, the not so great window of time for DC...lots of traffic on a Friday which translates to 2+ hours drive home. 

Brayden will continue the bone infusion indefinitely, scheduled for every 3 months.  Then he will have a bone scan in 6 months to see if there is improvement from the infusions and coming off the ketogenic diet.

MORNING UPDATE:  He handled everything yesterday without problem.  Last night/early this morning was a different story.  High fever, 102.3 which could have caused the seizures; seizure with lots of little ones in the midst of a big one that caused racing heart, vomiting and troubled breathing.  Motrin, Diastat (big seizure med), put him on oxygen and he finally found some rest.