Thursday, July 2, 2015

We had a House Fire

Where to even start…

I thought the biggest stressor this summer would be finding a full time nurse for Brayden.

I thought I would be coming home from our Hilton Head vacation to post pictures of all of our fun (incredibly hot/sweaty fun at the beach).  Instead we came home to find a house fire.

We had a house fire.
Saturday evening, we pulled into our driveway.  Car full of tired people.  We hopped out of car and tried to open the garage doors, nothing would open but we could see power was still on in part of the house.  Jeremy and I went in through the front door.  We walked in and knew something was terribly wrong.  But it didn’t register at first.  The house was covered in a gray haze.  Jeremy wandered one direction and I in another.  We wandered back to each other and Jeremy said, “We have a fire.”  We just couldn’t process what was happening.

The fire department was called.

There was a fire in the basement.  The fire seemed to be caused by the massive storms and lightening that rolled through our area last Tuesday night.  The fire burned in the basement.  That eventually fried lots of electrical wires and water pipes.  The busted water pipes may have helped put of the fire.  It turned in to a low smoldering fire that filled the house with smoke and soot.  We found the house fire on Saturday, we do not know how longed it actually burned.  We are not even sure the smoke detectors went off.  The inside of the house is absolutely covered in soot and reeks of smoke. 

Our house is not livable.  We do not have our house for a while.

The entire finished basement is lost due to the fire, smoke and soot damage.  The main floor is damaged a little less, some stuff will be lost.  And the top floor is damaged by the smoke and soot, but most of the stuff should be fine.  Contents on the main and top floor have all been hauled away for special fire/smoke cleaning, seeing what can be done with it all.  A lot of the items will still have to be replaced.

That is just stuff.  Things can be replaced. The house is still standing.  All of our things have been removed.  Walls, ceilings, etc. will be torn down.

We are looking for a place to stay while the house is being repaired.  Finding housing is proving quite difficult to accommodate a space for Brayden, a full bathroom on the main floor that we could use for 3 months then on a month to month basis.

The good things:
  • We were not home.  Especially since it seems the smoke detectors did not go off.  Brayden’s room is on the main floor and the smoke would have hit him first, while the rest of us are upstairs.
  • We have suitcases of clothes and the basics from our vacation.
  • We have Brayden’s primary medical equipment with us from vacation.

This will be a summer we will never forget.  More details to come later.  For now just pray that we can handle this stress on top of our already stressful life in progress...

Monday, May 25, 2015

Pool side crew

Brayden's happiest place is to be outside, by water and with his family.  So Memorial weekend was perfect for him.
And time with his life long friend.  The harder I tried to take a picture of them, the less they cooperated...just like all children.  "Look at me" apparently means the opposite.

Thursday, May 14, 2015

New Wheels

When Brayden's current wheelchair arrived, I was not happy.  I did not like the way it looked and I did not like how crazy heavy it is.  We needed something to use while out and about and around the house.  The big wheelchair is used for school and riding the bus.
We ordered a Convaid Rodeo, which has options for support, tilt, canopy, folding, etc.  It finally arrived and they came to school to make the proper adjustments.  So far it seems like it will be a great fit for Brayden...and a great fit in the back of my car (the big wheelchair doesn't break down much and I have to fold down the seats in the back of our Denali XL to put it in, it is just that big).

Monday, May 11, 2015

Reading with Brother

Brayden absolutely loves to be with his brothers.  After school, Luke wanted to read to Brayden.
An hour and many books later, Brayden was leaning on Luke, hoping he would continue to read.  Much to Brayden's chagrin, Luke had to start on his homework, otherwise he would have stayed there for hours.

Thursday, May 7, 2015


Yes, I talked extensively over the last several months about Brayden's bowel movements.  The past several days, I have poured over Brayden's lifetime of medical records, trying to put together an outline of Brayden's slowing GI system.  Today, I talked about Brayden's bowel movements for a long time with a new doctor at Children's National in DC.  We went through Brayden's GI history, tests that he had and his current problems.  The doctor reviewed possible procedures and outcomes, even drew pictures of GI System, tests and even little butt cheeks to make his point...

Basically, it does not seem likely that they could find a reason or diagnosis for Brayden's poor/minimal GI system motility.  His brain is so abnormal.  The GI system is run by the autonomic nervous system, which we already know Brayden's is abnormal.  Thus it is really no surprise that his GI system would be struggling, especially as he gets older and bigger.

What that means for Brayden to have a bowel movement...we do not know quite yet.  The GI Motility doctor suggested today that we start with tests to assess Brayden's lower GI system.

1.  Transit Study (Sitz Marker)
A colon transit study is a diagnostic test that will allow your doctor to evaluate the function of your colon.  A capsule, actually we will open capsule and insert the contents (2 dozen or so tiny little rings) into the hole where his j-tube is.  About an hour after inserting the capsule contents, Brayden will have an x-ray, for his baseline.  He will have an x-ray every 24 hrs for 4 days, then another on day 7.  The x-rays will show the progress of the capsule contents, hopefully progress the small intestine into colon.

2.  Barium Enema

It is a lower gastrointestinal (GI) examination, is an X-ray examination of the large intestine (colon and rectum).

3.  Manometry AnoRectal

Using an intrarectal balloon, into his rectum, to assess the rectoanal inhibitory reflex (RAIR), rectal sensitivity, capacity, and compliance.

4.  Colonic Manometry

A technique that allows recording of intraluminal pressures from within the large bowel by means of a colonoscopically positioned multilumen manometric probe.

The Colonic Manometry (#4) will be under anethesia, admitted to the hospital for 24 hour evaluation for test.  The Manometry AnoRectal (#3) will be done at the same time.  Brayden should be scheduled for this sometime in July or August.

The Transit Study (#1) and Barium Enema (#3) will done over the next few weeks (at different times). These tests are not a surprise to us.  We were told to expect so rather invasive testing of his colon.  Hopefully the test will so the doctors the best plan of care.

Tuesday, May 5, 2015

How much info do they really want?!

We are still working on Brayden's GI motility.  I am trying to prep for a meeting with the motility clinic in DC and working on Brayden's full medical history for the motility clinic in Ohio.

I plan to send over a summary of Brayden's GI troubles and a few pages from Brayden's current GI doctor (that has helped us make lots of decisions over the years) to the doctor in the motility clinic at Children's National in DC.  But I received a packet to complete for the clinic.  It started off pretty simple, demographics, medications, etc.  Then it came to the boxes for hospitalizations and surgeries. 
Seriously, three boxes for hospitalizations and two lines for surgeries...there are too many to list and may be obnoxious to attach all of it.
So I attached a short list, in categories:
g-tube, g-j tube, j-tube
Upper GI studies and scopes
Chronic vomiting/pancreatitis
MRIs for brain
Tonsils and adenoids removed
Ortho - multiple for legs/feet

As for the number of hospitalizations...I have no clue, I stopped counting a long time ago (to overwhelming to really know the number).

I did send a text to a friend whose son has had over 70 MRIs (and that doesn't count all of the other stuff)...wondering how and if she would even bother to fill out such a section.

Tuesday, April 28, 2015


Tight legs and toes.  Time for botox injections.

Brayden was ready and quite comfortable the entire time.
Scheduled for a Tuesday at 3:30 p.m.  The OR schedule was backed up.  Brayden finally went in at 5:00 p.m.  He is under anesthesia for only about 30 minutes, got several injections in each leg and foot.  Then headed to the PACU.  He was so cozy under many warm blankets, he did not want to wake up from the anesthesia.  He needed a little encouragement to wake up.
Interestingly, since Brayden is on Bipap now for sleep apnea, the hospital requires us to bring the Bipap to use the PACU.  The hospital inspects his machine and has it ready for him in case he needs it.  He did not (he is only under anesthesia for such a short time).

Then we head rush hour traffic, on the beltway.  We finally arrived home around 8:30 p.m.

Thursday, April 23, 2015

Those motility issues

Brayden has not had a bowel movement on his own for over 9 months.  It requires a lot of help on our part for him to actually go.
We have tried:  Miralax, Lactulose, Senokot, Enemas, Magnesium Citrate, and many other things.  It really has nothing to do with the stool.  His brain/body just does not tell him that he needs to have a bowel movement.  Since Brayden was about 13 months old, we have seen the slowing down of his GI system.  The stomach, intestines and now his colon has slowed down dramatically.

We meet with Brayden's GI doctor, that we have been with for years, to go over Brayden's GI history.  We are trying to prep for a meeting with a motility clinic at Children's National.  This clinic is relatively new, no one seems to know much about it.   Brayden will be going to this clinic in a couple weeks.  Meanwhile we are still working on the paperwork for the big motility clinic at Nationwide Children's in Ohio.

We talked with Brayden's GI doctor.  Brayden's GI system has gone through a lot in eight years.  Scopes, testing, studies, g-tube, g-j tube, j-tube, suctioning, draining, medications...

I hope to put together a summary of Brayden's GI history to send to the motility clinic in DC before we meet with them.

In order to understand Brayden's GI system in its current state, it looks like Brayden will have to go through more testing and studies, some rather invasive.  It also looks like Brayden is heading toward a colostomy bag, actually there are some alternatives to a colostomy bag but all something similar.  Two of Brayden's doctors have already started prepping us for this idea.

We will see what the clinic at Children's National in DC has to say.  Then we still plan to see the Motility Clinic in Ohio, but that will take months before Brayden gets an appointment.

Pooping is a very important part of one's life...

Monday, April 20, 2015

Infusion Time

Time to park it for a day at Children's National.  Bone infusion day.

Brayden was NOT having it.  He started his screaming fit before anything even started.  He was SCREAMING (he typically does this at night for a couple of hours, several times a week), he gets to the point of no return and nothing can calm him down.  I held him, rocked him, laid in the bed with him...he was not settling.

The morning of the infusion starts at 8:00 a.m. to check-in.  We wait for a bed to be delivered to the clinic (recliner chairs are provided but Brayden cannot sit in those).  Then we wait for the pharmacy to make the pamidronate.  We wait for the IV team to come.  We wait for the 4 hours for the infusion to be administrated via IV.  It is an all day process.
An anesthesiologist came to put in Brayden's IV (thankfully the nurses in the clinic know he is a hard stick so they don't even try).  We have never seen this anesthesiologists...which always makes me nervous.  I tried to convey to him the best places to find Brayden's veins, he didn't listen to me much but he quickly realized I was right.  He looked and looked, tried twice and found no good vein.  Thankfully he stopped and requested the special IV team (that basically goes around the hospital just to do those hard-to-find-a-good-vein patients).  This team we know and have done Brayden several times...and they got it in one try.

Brayden seemed to have settled down at this point, looking like he was going to sleep.  The infusion started.  Brayden started the screaming again and he did not stop.

I forgot to mention that we are in a tiny room, that we share with another patient and their family.  Brayden's screaming was upsetting the little girl there for her infusion.  She was crying, "Please don't give me the shot, I will try to be brave."  I could not get Brayden to settle. 

Many of you may think Brayden is upset about the infusion, the IV, etc.  While that might be a reasonable explanation, we are thinking it is not.  He often has this screaming episodes, like he is in no control of he is out of his mind...the harder we try to calm him the more upset he gets.  And he can go for hours.  Today was one of those days when he went for hours.  It is the MOST exhausting thing for him and me.  I had to leave the room for a moment (to cry a bit in the cafeteria and call Jeremy) while Brayden's homecare nurse stayed with him, who thankfully came with us for the infusion.

Brayden finally settled for a little bit, started screaming again, then settled down was a roller coaster.
Towards the end of the infusion the nurse arrived with a gift for the kids, Brayden got a little Simba stuffed animal.

The infusion ended.  In weeks prior we talked with Brayden's neurologist and the bone clinic team.  Brayden's reaction to the bone infusions, the few days after the infusion, have been really rough.  High fevers (104) and uncontrollable seizures.  The doctors agreed to give Brayden a good dose of Ativan via his IV before we went home.

Saturday, April 18, 2015

The Birthday Boy's Party

Brayden was ready for his party.  Actually he was ready for the beautiful weather and being outside.
At first he was pretty serious.  But then it came time to open presents and he made friends with a singing/dancing monkey.  He loved it.  He danced and smiled.
The world must stop when he smiles.  He does not do it often and we do not know how to make him when he does, I need to slow down time and soak it all in.  Love that smile.

Friday, April 17, 2015

The Birthday Boy

He had to go to school on his birthday, much to his dismay.
In protest he would not open his eyes or even acknowledge me.

After school he did get some good cuddles from daddy and licks of an ice cream cake.
As soon as Brayden left for school, I had a melt down.  Some how his birthdays always sneak up on me.  Perhaps because he is developmentally stuck in this baby like ability or that I just cannot believe he is still with us at 8 years old.  I have never let myself think about he growing up or getting bigger.  When he birthday arrives I am overwhelmed with emotions coming from every which way.  Mostly I am so thankful we have had 8 years with him.

Friday, March 27, 2015

Adaptive PE Day

A little field trip down the road to a high school.  The school and students volunteers host the Adapted PE Day for special ed students in the area.

Buses arrive and high school students line the main hall to greet the kids coming in.  Cheering, clapping and even the mascot.  Then the kids meet their "coach", a high schooler that will take them through activities.
Activities and games throughout the morning.
Brayden with his long time friend

At the conclusion, they have a dance party and awards given to each child.  Absolutely precious time.