Wednesday, August 26, 2015

Quite the Poopy Summer

As Carter declared (in frustration as he huffed his way up the stairs), "This better be my worst summer ever."

I could not agree more.  At some point the level of which our stress and chaos has reached is utterly ridiculous and at times laughable.

Case in point, our temporary housing was without air conditioning up until a couple of weeks ago.  It has been one hot house.  We have had a parade of mice, ants and spiders, so now the house is like one big trap for any small thing.  Then on Monday we discovered the refrigerator/freezer was not working.  And we did not notice until very late in the day, probably stopped working on Sunday.  Thus we lost all the food (that we finally started to replace/stock from losing it all in our fire) in the refrigerator and freezer.  Borrow coolers and bought some dry ice, we at least needed something for Brayden's stuff.

Seriously, that just has to be ridiculous.  We keep telling ourselves that at least this house has plenty of room for our crew and it is still in Waterford.

On Monday, Jeremy and I trekked to Children's in DC for Brayden's Barium Enema.  Fun, I know.  Thankfully the techs and radiologist were amazing.  Even let us play music from our phone to help relax Brayden.  Brayden's was given the barium enema; I can't even begin to explain how big that bag of barium was going in to him, yowsa.  The tech was worried that putting the tube into his rectum was going to upset him, we assured her that for better or worse Brayden is quite used to the enema action. 

The radiologist was quick and efficient, taking many x-rays as the barium enema made its way through Brayden lower system. He even took the time to fully explain his findings. As he said, "I have good news and bad news.  The good news, his anatomy looks perfect.  The bad news, this gives you no answers to his motility problem."  The tube was lowered from Brayden's rectum and it flushed him out...in a way that I imagine colonics to be (and a confirmation as to why I will never have colonics).  The tube was completely removed and we were ready to head out.

One test down and a few more to go.  The other tests are more complicated and we are still working out all of the details.  But the plan is to move ahead with the testing over the next few weeks.

Meanwhile we are still struggling with Brayden having regular bowel movements.  He just has absolutely no control over it anymore.  Just moving him and little tiny squirts (yes I typed squirts) of watery poop roll out.  That can happen when he sneezes or coughs as well.  However it is just not enough to consider a real, productive bowel movement.  This morning, I was changing Brayden, moved out his diaper and here comes the squirt on to his bed.  Time to change the linens.  I clean him up and move him to a spare bed in the adjacent room.  I feel something drip on my foot.  A little squirt was running down my pants and dripped on my foot.  Then I look around.  His squirts of watery poop happened as I was moving him.  Literally sprayed his bed, the floor, some equipment, his wheelchair, a rug and me.  It covered over 30 feet.

Quite the poopy summer.

One summer I cannot wait to be over.  I cannot even begin to explain all that is going on so for now, we talk poop.

And the refrigerator was fixed.  And Brayden's room is very clean now.

Sunday, August 16, 2015

Pool to relax, Panic from Puke

A few days out of the hospital and Brayden is still keeping us guessing.  Coming home from the hospital DOES NOT mean that Brayden is healthy and problems are solved. 

His little body went through so much at the hospital.  I am still in shock from how far things went and how he ended up in the PICU. 

Once we were back to the rental house, Brayden needed a bath.  We started to remove all of the bandages and band aids.  His arms and legs look like someone took a baseball bat to them.  I realized that he had about 12 places where he had an IV or an IV was attempted.

Remember he had an arterial line, that took 2 hours to place (when we were told it would not be very long)?  Once we removed the bandages, we discovered why it took so long.  I was told the arterial line was going to be placed on top of his foot and it ended up being around his ankle.  The top of his foot and ankle area has over 15 spots where they tried to place the arterial line.  15 places.  Now I know why they closed the curtain on us and why Brayden was given anesthesia.

To decompress from it all, this weekend we headed back to our actual home for a swim in the pool.  Thankfully the pool is still working since it is on different electric.  The water was a bit cold for Brayden but he quickly settled in once he found his place on the raft.
Things seemed to be going well.

Then last night happened.

Brayden screamed from 9:00-11:30 p.m.  Then started up again around 1:30 a.m.  I waited in bed, hoping he would calm down but he did not so I was up with him from 2:00 a.m. to who knows when.  I eventually had to leave him alone and he cried himself to sleep.

This morning I walked in to start his morning routine and found him COVERED IN BLOOD.  He vomited blood.  It was like a scene from a horror movie.  Rolling out the sides of his mouth.  His chest and arms covered.  And the biggest casualty in all of it was his beloved tiger (you see in many pictures), who seemed to be the landing spot for most of it.  I shouted for Jeremy in a panic.  We have not seen this bloody emesis in years.  I have absolutely no clue as to what would cause it.  We have pictures of it but it is just too graphic to post, we hold on to the pictures to show the doctors.

Jeremy and I cleaned him up and his bed (tossed tiger in the trash).  He slept most of the day, praying he sleeps tonight.

Since he has been up to his regular feeds for a few days, we haven't seen enough stool.  And now I don't what to do for him.  We see the pediatrician tomorrow.  Children's Hospital contacted us the day after he was discharged to set up more appointments and tests (barium enema, sitz marker, anorectal manometry, colonic manometry).  Brayden will be busy the next several weeks.  Pray we find the best way to help him.

Thursday, August 13, 2015

Back Home (well, rental home)

Brayden made it out of the hospital.
Before we headed out, it was a very busy morning with rounds and rounds of doctors.  I forgot that it is only August...in July everyone moves up in the doctor world; new med students, med students move to residents, etc.  The first rounds this morning included 12 people.  Then rounds with GI.  And finally rounds with the fellow and attending doctors.

All said Brayden was ready to be discharged.  All of that happened before lunch time.  But we did not receive the discharge papers until 7 hours later...crazy frustration.  We finally headed out of the hospital, much later than I anticipated.
Thankfully Brayden was feeling much better.  How do we know?  He scoots around the bed.

And his new trick this summer is to hold on to cords, whether it be his drain tubes, feeding tubes, monitors.  He wraps his fat little fingers around them and holds it like a lovey.  He drove the nurse nuts on the general floor because he was tugging and would set the monitors off.

Brayden has a long list of appointments and tests that will need to be done over the next month.

As I went over his discharge papers, I finally saw in black and white the reasons Brayden was sent to the PICU.  His electrolytes were a mess (possibly from being dehydrated and/or the results of over using enemas), which caused problem for his heart and kidneys.  Scary to see the list of problems.  Thank goodness we drove him to Children's that night.

Wednesday, August 12, 2015

Moving Up and Out of PICU

Well a 24 hours in the "special" roommate PICU room has been a treat.  We didn't realize how good Brayden had it in his private PICU room for the past several days.
Jeremy spent the night last night.  I have been here all day.  Our one chair in Brayden's zone, where we sat, is pushed up against the magic curtain dividing us from another patient in here.  I look down this morning and I realized we are pushed up against the neighbors bed side toilet (the picture of the leg and chux under it to catch anything).  Delightful.  Another neighbor in this "suite" of 4 patients has no sense of neighborly behavior, playing the TV so loud that you can hear it down the hall and all of the room has been privy to his life drama that he has discussed over several phone calls.  Not to mention all the staff and equipment noises as well.

That 24 hours seemed like the longest 24 hours of being here.

But Brayden has moved up to the general floor this evening.

He has had a good day.  He just seems frustrated with being here and being messed with.  All of his numbers are looking good and he is almost up to the normal feeding rate through his j-tube.  Still on some IV fluids.  We have still been waiting for the GI to take over or at least relay a plan for Brayden's GI motility problems.  I am a little okay with not seeing the GI doctor that is doing rounds, he has reminded me of why we switched Brayden's GI doctor several years ago.  But I do want a plan to see the Motility GI doctor when we get out of the hospital.

Only one nurse has told us that he may go home tomorrow so we are holding on to that.  No one has said it since but we have high hopes to get outta here.  Everything they are doing for him, we can do at home (other than the IV and he is not getting much through it).

The new room is quite spacious.  It should be a good night sleep.  And since he is no longer in the PICU he should be left alone for the majority of the night.  But right now he is screaming and I don't know how to comfort him.

Tuesday, August 11, 2015

Out of PICU?

Today was a good day.  Brayden is almost back to his normal self.  Moments of big eyes and his "talking".  Even shouting out when he wanted the music in the movie to come back (shouting loud enough a nurse came to check on him).
The arterial line was removed.  He only has one IV in place.  His feeds, through his j-tube, are slowly being increased.  The majority of his medications are being administered through his j-tube as well.  So far he has been tolerating it all.  His labs are almost in the normal range.

Brayden had an EKG this morning that looked good.  The tech told me he had two previous EKGs, one in the ER (which I kind of remember) and another that I don't recall him having.  Those previous EKGs were quite abnormal, according to this tech, so it was great this morning's test was looking good.  The bad EKG results were probably a result of his electrolytes being a mess.

That kind of progress will get him out of the PICU...if only there was a bed on the general floor.  We have been awaiting a bed.  This evening Brayden was moved to another room in the PICU while we wait for a bed on the general floor, they need his room for another critical child.  This other room in the PICU...well it is a room with four beds, patients, nurses and all of the equipment.  And of course there is the "magical" curtains that divide the patient's space.  It is tight.
Brayden should be able to move to the general floor and have GI take over his care from there.  We have to wait and see what tomorrow brings.

The staff in the PICU has been amazing.  Incredibly kind and on top of Brayden's care.  Today I was in the elevator with the PICU doctor team.  We were all heading to the café.  I just needed a break from the room and was going to get coffee.  We all walked off the elevator to find the café was closed.  The doctors asked if I was going to head to the cafeteria.  Instead, I headed back to Brayden's room.  About a half hour later, one of the doctor's delivered me a coffee.

Coffee and a happy Brayden makes for a better day.  As well as a fabulous faux hawk for hospital bed head.

Randomness in all of this

At some point the craziness has to be comical...we are just a mess.

My lecture to the boys the other day may have sounded like this (in that oh-so lovely mom crazy voice):
"Yes, this sucks.  All of it sucks.  Complaining and whining about how much it sucks is only going to make it suck more and make all of us even more miserable. 
Oh and don't say suck, ever,  It sounds awful."

On my way in to the hospital this morning my mind was all over the place.  Here is my randomness about this summer:
  • Being in the rental house makes me realize that we do not only miss our actual house but we miss being in a neighborhood.  We feel very isolated.  The boys miss being able to run to multiple houses to find friends.  In the rental we have horses to talk to.
  • The rental house air conditioner is broken in the front of the house, which is where the bedrooms, TV room and kitchen are located.  It has been broken since we have been there.  I really do like air conditioning (and I am sure the mice in this house do to, yikes).  Hoping they will fix it soon.
  • The boys are not sleeping well, perhaps from the hot house or just not being in their own home.  Which means they are bickering more with each other, love that.  Trying to be patient with that.
  • The rental house is on the other side of Waterford which actually makes us feel so much closer to everything.  Amazing what shaving off 10-15 minutes feels like.
  • Before Brayden came to the hospital, the hospital bed that we are renting in the rental house, broke and is stuck in the upright position...yes he slept like that for a couple of nights while we wait for it to be repaired.
  • I really do like vanilla hospital pudding.  I always have.  Weird but it is a simple pleasure being here.
  • It has been around 3 years since Brayden has been admitted to the hospital.  That is an amazing stretch.  We are here a lot for appointments and procedures (and don't count ER visits).  But 3 years, considering how much we had done his first 5 years of life, is good.
  • The hospital movies have been a nice change for Brayden.  He is loving Nemo and Aladdin.
  • I need to start a blog for sights to see at a city hospital (much like the sights to see at Walmart websites).  Just people watching is entertaining.  No I do not mean the sweet patients here, it is all the other stuff going on around, holy cow.
  • Very few parents in the inpatient area.  On our current wing, we have only seen one parent.  Heart breaking.  And we know there are many reasons why they cannot be here.
  • This hospital is overwhelming (I remember some one telling us that shortly after Brayden was born).  If you open your eyes, you see too much heart ache and hurt.  Just this morning, we saw a father break down in the cafeteria.  The first day here we heard the PICU desk, seemingly talking to the morgue about picking up a body.
  • Driving in and out of DC to this hospital is quite an adventure, especially during the summer.  Why oh why does the tourist try to cross the 8 lanes of constitution ave. when they are not on a cross walk...  And heaven forbid you get stuck waiting for the Presidential motorcade to go through.
  • Football starts tonight for the boys.  That will be a welcomed activity to keep them busy and seeing friends.  We were able to get most of their gear from the fire cleaning company.
  • The boys have been playing tennis since the rental has a court.  They really like it and have picked it up quickly.  I realize how much I really do enjoy tennis and miss playing it.
  • I feel like we are having an experiment in living like a minimalist.  Equipped only with our clothes and gear from vacation, we each have a good 10 outfits that go through the rotation.  Which means I have to keep up with laundry.  And after all of this, I never want to see these clothes again. 
  • The meals people have been bringing all have been delicious.  A huge help.  And apparently some of our friends have been hiding what good cooks they are.
  • We have an amazing community from the schools, to Waterford, to sports.  All kinds of help.  Even just with a simple hug or text.  Love every bit of it.
  • I don't know if Jeremy or I have a limit but we may be pushing it.
  • We found out Brayden's bus cannot pick him up at the rental house.  Which means I will be driving him (to a school that is not in our community) and will have to rearrange his school times for the fall so I can get Carter and Luke to and from their school bus times.
  • I cannot wait for school to start because it will offer some routine for everyone. 
  • I cannot wait for all of this to be over and we came resume our "regular" chaos.
  • God is in control and thank goodness because I cannot be in charge of this craziness. 

Monday, August 10, 2015

The 3 P's

Potassium, Poo, Progress

Brayden needs more potassium, needs to push out more poo and that will be good progress.

Brayden's day started early with a bed bath and full scrub down.  Oh how he needed it, he was stinking out of every nook and cranny.  And he is a boy...why take have a bath?!  So he protested the entire time and after.

Brayden is slowing working his way to being more stable.  His electrolytes continue to look better, his heart rate and breathing have not been a problem for over twenty-four hours now, stool and gas come out little by little (oh the smell of all that when it has been stuck inside for too long).  He has moments of acting more like himself but very tired and showing signs that he does not want to be messed with.  Still sleeping the vast majority of the day; quite upset and irritable when awake.

One of his IV lines was removed, probably not by choice, it wasn't a very good line.  His has one IV line and one arterial line.  The concern continues to be getting and keeping him stable.  The IV lines can only take in so much.  The team of doctors are attempting to start up his feeds through his j-tube so he will get more liquids through that as well.  However starting up feeds when he has been on gut rest for a while is a very slow, tedious process.  His feeding is started at 5 mls per hour.  That is about 1 teaspoon an hour, going into his j-tube (jejunum).  That is crazy slow.  They may increase it later tonight if he tolerates it well.

The hope/plan is for his lab numbers to continue to make improvement with the IV, arterial line and j-tube feedings.  We are trying to avoid getting a central line, which is not necessarily a terrible thing but just one more thing to put his body through and not really a step closer to getting out of here anytime soon.  They cannot push the fluids and all that he needs through the IVs any faster or in bigger quantities, it just cannot take it.  So hopefully getting some nutrition via his j-tube will help and he can avoid a central line.

The GI team came by this morning.  A team of three doctors.  The motility specialist we were hoping to see is out of town for the week but this team read through Brayden's GI history before coming to his room.  One of the doctors was Brayden's GI doctor several years ago (a story on that guy later, it involves one stinky poo and a break-up).  Basically there is not much the GI team can do right now.  They do not want to do any tests until Brayden has recovered and given his GI system time to get back to its "normal", which is very abnormal.  It doesn't look like he will be getting any GI tests during this hospital stay.  Doing any GI tests right now would not be accurate or a very true picture because he body has been through so much and he has been on gut rest.  They agree that Brayden has a serious motility problem and doing frequent enemas is by no means a solution...it is probably what put him in the PICU.  They may try a combo or different stool softeners/stimulants to see if that makes any difference...I stressed to them that we have tried them all but they want to try again until we can get motility testing and we are not relying totally on enemas to get the poo out.

Child life stopped by to give Brayden a new stuffed friend.  He nestled right in.  Such a snuggly guy.
Carter and Luke stopped by this evening.  It was the first time since we have been here that Brayden was very content and they were relived to see him.  Jeremy, Carter, Luke and I had a late dinner in the hospital cafeteria, delicious.  Should we be concerned that they served mac and cheese for the third day in a row?
Pray that Brayden continues to make progress and in that progress he gets more comfortable.  Pray for Carter and Luke, they hit the wall yesterday, tears from everyone.  As Carter said, "This has to be the worst summer ever".  Well, it is at least one we will not forget.  Pray that Jeremy and I find the best way to be there for all of our boys.

Sunday, August 9, 2015

Still the PICU and not enough Poo

Not much change for Brayden today.

He is still in the PICU.  His breathing and heart rate have stabilized.  His color looks remarkably better, no longer that scary sick waxy color anymore.  But he does look very uncomfortable. His blood work is still a concern, electrolytes are not considered stable yet.  It looks like there cannot be anymore IV bags hooked up, lots of fluids and more going in to help him out.

Brayden had another abdomen x-ray, his system is still full of stool.  And that spot on the x-ray, the sorta-looks-like-a-kidney-stone spot, is actually a tooth he apparently lost and swallowed recently.  It is making its way through his GI tract.  I am considering offering a reward to the nurse that finds it in his diaper.

Brayden's tummy is still hard and swollen.  Some time in the middle of the night they tried to get some of the stool out.  It was a geyser of liquid poo, apparently 400-500 ccs of it (oh that poor nurse).  And still there is poo and a hard tummy.  His g-tube drain is a dark, disturbing color that still smells like poo and so does his breath.  We did attempt some serious teeth brushing today.

He has been a bit more alert/awake today.  Which is a good thing but is showing he is miserable.  It seems like so much effort to even open his eyes.  Then he lays there and oh so softly, and pitifully, moans in pain; too much effort to cry.  Still gagging.  We just want to comfort him and don't know how.

We are have been discussing pain management for him, unfortunately there are not many options, as most of them slow down the GI system and we need all that he has to offer (even if a tiny bit).

We don't really have a plan of care at this point, just to get him stable.  Hopefully tomorrow we will see the Motility GI doctor.  The hospital on the weekend is like a ghost town, it seems like only essential personnel (the nurse called it the skeleton staff) and so are the cafeteria food options, yikes.  So Monday should be much busier and hopefully more productive.

For a bit of comic relief or to just sound more pitiful...during a diaper change today Brayden peed over the rail of the bed and landed on my foot (I am wearing sandals because that is all I have at this point).  Oh this only gets better...I pick up Carter and Luke from a friends house.  Luke is complaining of a headache, we know he struggles with migraines (it runs in my family).  It hurts so bad that it is making his stomach upset, anyone that struggles with migraines knows this feeling well.  We rush in to the rental house, I am trying to help him.  He doesn't make to the bathroom and he vomits all over my foot, my peed-on sandal-wearing foot.  And here is the thing, I don't really have a lot of cleaning products since all of ours were trashed and I haven't purchased very many.  So off to the store.

Time to call it a day.  Jeremy is at the hospital with Brayden and I am attempting to manage the other two boys here in Waterford.

We are nothing but fun here.

Saturday, August 8, 2015

From Poo to the PICU

Last night, I drove Brayden to the ER at Children's National in DC. Shortly after he was admitted to the ICU.

As many already know, bowel movements are a big deal on our house. It is something Brayden struggles with on a daily basis. It is a problem that we have been working to resolve. He has very, very poor motility in his GI system, no matter how soft or loose his stool is, he cannot get it out so we have to help him with enemas.

Brayden had his regular enema a couple of days ago, nothing significant happened. So he had another the following day, nothing happened so he had another and again nothing happened. He needed more assistance to get out the stool and now the enemas. Without going through too many details, we struggled with getting a bowel movement and the enemas out. He started gagging and vomiting as well. Then yesterday he was worse, lots of gagging, still no bowel movement. His drain from his g-tube now smelled like poo as did his vomit. I called the doctor.

After some discussion, we decided to take him to the ER at Children's (since that is where the motility GI doctor is located). Brayden's bag was already packed because we was supposed to be heading to the respite place, Jill's House. Throughout the afternoon Brayden became more "sick" looking; very lethargic, gagging, vomiting, miserable. Jeremy stayed at the rental house (oh yes, this happens while we are dealing with our house fire) with the boys and I headed out with Brayden.

On the drive to DC, Brayden really scared me a few times (which has not happened in a very long time). He became unresponsive, very unresponsive. Jeremy and I were discussing if I should pull over and just call 911. However it was 5:00 p.m. in the DC metro area on a Friday night, traffic was a mess and it did not feel safe to stop on the side of the road. I could still see Brayden was breathing, so I could breath and keep driving.

We arrived to the ER and they quickly took him back. There was a huge problem trying to find a place on him for an IV line and to get blood work (no surprise he is a horrible stick). He was so out of it, that the many sticks trying to find a IV line, did not bother him one bit. Meanwhile his oxygen was all over the place dipping into the 70s and 80s (you should be in the upper 90s if not 100). His heart rate was almost double of what it should be. He was put on oxygen then BiPap, also because too much CO2 in his blood. They gave him an EKG. Ordered x-rays of his abdomen.

The bloodwork came back a mess, he was still struggling with all his stats. The x-ray showed a lot of stool, no surprise. And a possible kidney stone...or a tooth he swallowed, that is yet to be determined, and the least of worries. Next stop was the Pediatric Intensive Care Unit.

He was admitted to the PICU. Put on IV fluids (more trouble finding a line to handle it all), potassium, general antibiotic, Bipap, seizure medications, etc. Hooked up to a lot, his room glowed in the night. Brayden was still very unresponsive...not bothered or upset in any way shape or form with all these people poking at him.
During the night Brayden did have a few bowel movements, but his tummy is still hard and swollen.  His bloodwork was still abnormal, electrolytes mostly the problem. And a bonus to find that he also has MRSA and now on contact restrictions.

Morning rounds. Respiratory stopped by. Then neurology, we all decided this was more of a GI problem than his seizures/neuro problems. The plan with the fellow, attending and resident doctors were to stabilize Brayden, bowel movements were not the focus.

Brayden started to look a bit better and the best sign was when the neurologist was poking at him and he tried to kick her. It was only one attempt but at least he showed signs of being annoyed.
Brayden still needed more fluids, potassium, calcium, medications and more labs. All trying to go through 2 very poor IV lines. The team decided Brayden needed an arterial line. It was time for them to place the arterial line. They could do it right in the PICU but I could not be in the room, since it was a sterile procedure. Jeremy just arrived at the hospital so we grabbed a bite in the cafeteria while they placed it. We headed back to Brayden's room and they still could not get the arterial line placed. I could not see Brayden behind a closed door and pulled curtain. The team in the room called for more help. Jeremy and I wandered the hospital a bit more...an hour and a half later and they still could not get it. Finally two hours later, he had the arterial line (and still 2 IVs).
More labs done. More potassium and calcium still needed, as well as other fluids.  He is also on gut rest, no food through his j-tube (we turned it off at home before heading to the hospital).  He was able to come off the Bipap, they did a little nasal cannula and he will probably go back on BiPap at night, which he sleeps with at home.

Now we wait to see how his body reacts.  Then more labs.  Once he is stabilized then they will start discussing the bowel movement problems.

Honestly, we are still left with a lot of questions.  I thought I was taking him to get the poo out and some how he ended up on the quick path to the PICU.  Really no idea what the plan is other than to get all of his stats looking good.

Thankfully by the afternoon we actually saw Brayden's eyes, he perked up a tiny bit to realize daddy was there and mommy had turned on Mickey Mouse for him.
Pray for his little, big, chubby body.  I forget that while he seems healthy on a daily basis, his health is always a delicate balance that can tip easily in the wrong direction.  Pray that we can figure out what is going on with his body and also start addressing his bowel movement problems.

Jeremy and I are running on fumes.  Honestly the most stressful week we have ever had, ever.  Pray we can keep it together for our boys.

Sunday, July 5, 2015

A Hoarder and an Air Mattress

Well, we made it through week one since our discovery of the house fire.  You never realize how much stuff you have till you see it all hauled away.

Throughout this week, we have just had those moments...moments when you realize just how utterly ridiculous all of this feels to us.

The basement was being emptied.  I was asked what we wanted to try to save.  At first, I felt like, "Take it all, I just don't even want to look at it."  We did find and pull out the boxes of photos and baby books, that were amazingly untouched in plastic tubs (although the plastic tubs that stored them were damaged).  I saw a pile of burnt items that had been tossed outside and I could not help myself, I wanted to look through them.  Only a few keepsake items that I wanted to find.  I was moving burnt and wet items, gloves on my hands and soot covered my feet since I only have sandals from our vacation bags.  This is the point when I must confess how much I enjoy the show Hoarders, probably enjoy it a little too much.  So, here I am sorting through my burnt and wet items while all kinds of chaos and more important things are going on around me...it felt like my hoarder moment and some one was going to come around the corner for an intervention.

Caring for Brayden has been a huge challenge.  Jeremy and I didn't quite realize how accustomed we have become to our house being accessible for him.  All of the things we have done over time to make his life, and our life, easier.  Brayden is currently on an air mattress in the middle of my in-laws family room (they are out of town so we are crashing there till they get back).  Oh how much I already miss his bed.  Caring for him and lifting him from the air mattress is a challenge like no other.  Brayden on the other hand does not seem to mind much, right in the middle of all the action.  Case in point, I am trying to get everyone out the door by 8:00 a.m. for basketball camp.  Carter and Luke shout for me to come to the family room, they have to show me something.  Brayden and Luke laying on the air mattress and then Carter starts jumping on the air mattress, launching Brayden and Luke in to the air.  More bouncing and more launching, at least they are having fun.

Brayden is all for fun during the day but during the night, do not bother him.  I have been sleeping on the couch nearby.  Jeremy took the couch shift for a couple of nights, although he was determined to try and sleep with Brayden on the air mattress.  Many people often ask us if Brayden can communicate...well let me tell you how he gets his point across.  Jeremy sleeping (or attempting to sleep) on the air mattress with Brayden.  At some point in the middle of the night, Brayden decided Jeremy was no longer welcome in his bed.  Brayden started swatting Jeremy with his arm, kind of a tomahawk action, with every swing hitting Jeremy and shouting at him.  Jeremy turned his back to Brayden but Brayden was not giving up.  He started kicking Jeremy, swift hard kicks to Jeremy's back.  He wanted to him to get out of the bed.  I hear, from upstairs, Jeremy say, "Brayden, you have got to settled down."  Needless to say, no one will be trying to sleep on the air mattress with him anytime soon.

Then, you cannot come to this blog without knowing we must talk about going to the bathroom at some point.  One morning Brayden and I were at the house, waiting for everyone to arrive, the insurance people, Jenkins Restorations guys, packing people, etc.  And I realized I had to go to the bathroom, cause I drank a cup of coffee on the way there.  Problem was, the water was off in the house and neighbors were not home.  What does one do?  Well, I did not go and I vowed to drink nothing else all morning.  I was not up for going in the woods.

Last bathroom item:  Brayden, enemas, on an air mattress...a challenge and lots of chux.

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

Motility

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.