Friday, May 27, 2011

School Picture

Brayden's school picture arrived this week.

He looks thrilled.  I think this is the way he looks most of his days at school...kind of annoyed. 

School is good for him but I am not sure we have convinced him of that yet.  He has some good days.  I do know that he likes school and the routine of it all.

The IEP for next school year has been completed.  He will be on the same schedule as this year.  3 days a week but a possibility to move up to 4 days a week, depending on how he handles it all.

Unfortunately, Brayden has missed a lot of school in the past few months.  Hospital a few times, the ER a few times, many doctor appointments and now a leg in the cast.

Hopefully next year will be better.

Wednesday, May 25, 2011

2 week Countdown

Went to see the ortho for Brayden this week, looks good, femur is healing nicely and two more weeks in the cast.

Went to see a different ortho for Luke this week, looks good, the arm is healing nicely and two more weeks in the cast.

Brayden's cast removal maybe difficult.  The physical therapist and orthopedist warned me that he will probably be pretty uncomfortable when the cast is removed because he leg has been in that position for so long.  The orthopedist recommended physical therapy.  I told her that he gets it at school but even though school will be out shortly, the PT will help us with activities we can do at home...particularly get him in the stander as soon as possible.  Oh boy...

Just the past couple of weeks, I have had Luke and Brayden with me out and about (mostly for doctor appointments).  We look terrible.  Luke with his arm cast, Brayden with his leg cast and I feel like I have terrible dark circles under my eyes.  When asked what happened by many people, I have not been quite sure where to start.  Could I just say we were in an accident?!  That seems like an easier answer...we were kind of, over and over again...

Monday, May 23, 2011

He's got Happy Feet

Well, not really.  But he has the movie and some really cute toes peeking out of the cast.

Brayden is slowly adjusting to having his leg in the cast.  He is getting a bit more comfortable being moved around.  At first, he only wanted to be in bed, not to be touched or moved for any reason.  The past few days, he has briefly been in the car and a jogger stroller.  Brayden does not seem to fit in his wheelchair with the big cast so Jeremy dashed out and picked up a fancy schmancy jogger stroller that could accommodate Brayden (and we could still use for Brayden at the boys' sporting events and our outdoor adventures).  At night, he has being crying for us to come shift him a little so he could be more comfortable.

As for Happy Feet, last week we discovered that Brayden enjoys the movie.  A little portable DVD player in his bed to watch the movie.  I think he likes this particular movie for a few reasons:  it has LOTS of music and he likes music; the movie colors are pretty simple, black and white because it is all about penguins; and the vibrations of the actual player, Brayden lays his arm right on top of the player.  Several times, he has fussed/cried when the movie came to an end.

Do you wanna know how many times he has watched the movie? 

Many, many times.  He deserves to be spoiled with his Happy Feet.

Wednesday, May 18, 2011

Big Blue Leg

The appointment this morning was successful.

An early start...I loaded all three boys into the car shortly after 7:00 a.m.  Carter for the bus stop.  Luke for a neighbor (who had him over that early!).  Brayden and I heading to the orthopedist.

Rain, and lots of it, had been coming and going since the wee hours of the morning so we left pretty early because rain does some damage to the traffic in the Washington DC area.  Thankfully the traffic was not too bad because we arrived 30 minutes before the office opened.  We were the first ones in, first on the sign-in sheet and first for the cast.

Brayden did not handle it all too well.  He screamed until he fell asleep in my arms, of course before the doctor came in.

The orthopedist reviewed the x-rays from the ER.  Yes, a break in the femur.

Time for a cast.  Choice of color, blue.  The tech removed the temporary splint and it had already bruised his shin and cause a spot of skin break-down.  Then the doctor gently pulled on Brayden's leg to straighten it a bit for the cast placement.  Did I mention Brayden is screaming in pain?  The cast was gently wrapped around and around, from his toes to the top of his hip.  Brayden still screaming.  I did pack an extra dose of Tylenol with codeine.

The cast dried and then he had a few more/better x-rays.

Thankfully the break in the femur is not too bad.  Brayden could have the cast on for only 3 weeks.

The cast seems to weigh more than his does.  Picking him up, putting him in his wheelchair, loading him in the car, carrying him up the steps, putting him in the bed...all very awkward and while trying not to upset him anymore.  He is not too happy this afternoon.  He screamed all the way home from the doctor. 

He is not pleased with having a cast.

Answered prayers that we got in with the orthopedist quickly this morning, that the break is not too bad, they could straighten his leg in the office, it is shorts season and we do not have to struggle to put him in pants.

Tuesday, May 17, 2011

Tears of Frustration

Brayden is still in his splint.  We have yet to see an orthopedist.

Starting back on Sunday, I found out that Brayden's orthopedist was out of town for a few weeks.  I spoke directly to the doctor covering for her.  I asked him if we could still get an appointment early in the week.  He told me that the office was double booked.  I asked him if we could come first thing and wait for an opening.  He told me that if we showed up, he would send us to the emergency room because there was no way he could see Brayden.

Sunday at the ER, the orthopedist who was at the hospital, did not come to see Brayden because he was in surgery.  He sent another orthopedist (whom I am not sure handles pediatrics or office hours).

Brayden was discharged with a VERY temporary splint because his leg was not straight, in fact bent all the way up...we were told was not the proper placement for the bone to heal and needed an appointment to get better x-rays and placement.  We waited in the ER for an additional 1.5 hours for the x-ray film...knowing that we did not know which orthopedist Brayden would be seeing and if they had access into that hospital's system.  Well the hospital's system was down and ten minutes turned into almost 1.5 extra hours of waiting and we still did not get the film.  We were told the film would arrive by Fedex overnight.

Monday morning, the pediatrician and her nurse started calling around for an orthopedist who could handle Brayden.  After many, many attempts by them, any available appointments through doctors at Childrens or Fairfax were at least 2 weeks or even one month out.   We settled on the idea that we could take Brayden to a local orthopedist (an office that Jeremy has been to for his arm and leg in the past).  The local orthopedist could handle the immediate the pain of a broken leg, and then we could follow up with more the specialized orthopedist if needed.

This morning, the films did not arrive yet.  But we still headed to the local orthopedist appointment.  Brayden was NOT happy to be leaving the comfort and support of his own bed.  We arrive at the office, I sign in.  A nurse comes up to me and says that they cannot see Brayden.  WHAT?!  Brayden is screaming in pain in the waiting room.  We dragged him out and they cannot see him.  Why?

I was told that this office could not handle this kind of case and they would refer us to someone at Fairfax (um, the doctor offices that we have already been trying to see).  Why is there something about Brayden and his leg that they could not handle? (I am glad they did not try something on Brayden if they could not handle it)

Jeremy immediately went out into the hall and started calling other doctors to find another appointment.  He got in contact with Brayden's original orthopedist...who, guess in town!  I have no idea why the doctor on call told me she was out of town.  At first their office told him that Brayden could not be seen until the end of next week.  Unacceptable.  Jeremy pushed and Brayden kinda, sorta has an appointment tomorrow morning at 9:00 a.m.  We will be showing up and waiting around as an add on.

Meanwhile the x-rays film had still not shown up so Jeremy decided to drive to the hospital (an hour away) to pick up another copy.

I feel terrible for Brayden.  He is uncomfortable.  His leg is a mess.

The orthopedist ordeal has been an ongoing issue for us since the fall.  We have not been terribly happy with Brayden's current orthopedist's plan of action for his care (prior to the leg breaking).  We had been scheduled to see the creme-de-la-creme doctor but canceled once because we waited in the office for over 2 hours.  Then the second chance with him ended up being when Brayden was in the hospital for his feeding tubes.  We asked for an orthopedic consult during that hospital stay but never got one.

Then in an emergency a broken femur...we still have problems getting an appointment, not just with that doctor but seemingly any specialized orthopedist.

Over the past four years, I have probably scheduled over a hundred appointments for Brayden.  Never have we had such difficultly.  Is it something about the orthopedic world?

I have a headache and am incredibly grouchy.  Thankfully Brayden is sleeping peacefully and I am going to fix myself a cup of hot tea on a gloomy day.

Sunday, May 15, 2011

Broken Femur - Can we get a break? Part Deux

Brayden has a broken femur.

Here is the story...

Yesterday I was dressing Brayden.  He seemed to be a bit tight, making it harder for diaper and clothing changes.  I pulled on his leg (as I always do) to help pull up his pants.  He let out a yelp and was not happy.  I just figured he was having a "tight" day.  He and I left for a soccer game.  Brayden continued to be a bit miserable but that seems to be his m.o. the past few weekends.  We returned home.

I was putting Brayden down for a nap and decided to put him in the knee immobilizers (leg braces) to help him get a good stretch, as we do on most days.  I got his left leg in the immobilizer and started on the right leg.  He started screaming the moment I touched him and I realized his right leg was swollen.

Jeremy and I decided to wait it out through the night and see how he looked in the morning.  Well, Brayden did not make it through the night and needed some help with the pain.  I was alternating tylenol and ibuprofen.  Then this morning I talked with a friend whose daughter has dealt with something similar, then called Brayden's orthopedist.  The orthopedist is out of town for a while so another doctor answered the call.  We were told to go to the ER.

We packed up and headed to the Fairfax ER.

Brayden whimpered on and off for the car ride.  Once in the ER, x-rays were ordered.  However they could not get a good picture because they could not get his leg straight.  Brayden has been holding his leg very tight in the frog leg position.  The couple of x-rays they were able to get showed a broken femur.  Although they could not tell how serious and extensive the break is in the bone.

The ortho on-call was in surgery so he sent another ortho (who do not seem to be with peds).  At first the plan was to sedate Brayden in order to straighten his leg to get an x-ray and put on the splint.  Then the doctor came back and it was decided to splint Brayden's leg in the bent position.

Brayden is home with the splint.  We wait for the morning to make a call to get an appointment with the orthopedist, hopefully in a couple of days.  Then they will try to get more x-rays and do a cast.

Brayden has moments of pain.  Any movement of any kind really seems to cause pain...diaper changes are fun.  The splint seems to help and we will be giving him some pain medication.

Saturday, May 14, 2011

How the boys do rainy days

A morning of soccer.  Then a rainy afternoon.  I was cleaning out closets (a favorite past time of mine, no really, I do enjoy it).  At some point I realized the house was quiet...perhaps too quiet when you have three boys.  I found Carter and Luke had crawled into Brayden's bed with the portable DVD player to watch a movie.  They looked so cozy.  I kept delaying dinner because I did not want to disturb them.

Friday, May 13, 2011

Can we get a break?

Luke brought home a book this week from the library.  The book was about a child who documented all the funny pharses adults say that really make no sense if taken literally.  Like, my ears are burning...can you imagine someone's ears actually on fire.  Or I cried my eyes out.  Or I have a frog in my throat.  Or my lips are sealed.

We have certainly heard people say to us lately, "I hope you can just get a break!"...after all of Brayden's hospital and doctor excitement.

Apparently, Luke took "get a break" a bit to literal.

An afternoon of playing outside and he lands on his arm.  So off we were to the ER once again.  The ER has become all to familiar to us and a little too comfortable. 

Luke broke his arm in two places...a temporary splint that was changed into a hard cast a couple of days later.  Luke needed to show Brayden and let him feel the cool blue cast.

Wednesday, May 11, 2011

For some good news

A couple of weeks ago we had Brayden's picture taken, the token 4 year old picture.  Would you believe he smiled for it!?  I like this picture because it looks like he is laughing.

Over the past couple of weeks Brayden has also been to many doctor appointments.  Checked in with pretty much everyone with an office visit, labs and/or phone call.

Lots of prayers are being answered.  Thank the Lord.

The good news:
  • Brayden's new wheelchair has been ordered, a Zippie Iris.  We also order a stander for Brayden to have at home (he currently only uses one at school).
  • Ultrasound and Nephrologist - No sign of kidney stones, despite the calcium in his urine being incredibly high.  Continue with the Bicitra medication and lots of water in addition to his formula.  He will have lots of labs and urine test in a couple of months.
  • Surgeon - The new j-tube is working and no problems.  A little leakage and skin irritation but that is to be expected and go away soon.  The g-tube is good too. 
  • Neurologist - Seizures are looking good...I should say lack of seizures are looking good.  Since coming home from the hospital with two new medications, Brayden has a major seizure only 1 time every 3-4 days.  Continue with the current medications and the ketogenic diet.
  • GI & Keto clinic - And...Brayden has gained weight!  About .5 - 1 lb. of weight gain.  We have been crushing Creon (6 capsules) and putting it into his formula.  We have also replaced a bit of the Microlipid fat for another fat called MCT oil, hoping that Brayden would absorb it better, which seems to be working.  This is great because Brayden can continue on the ketogenic diet and we do not have to check in with the clinic for two whole weeks.
And I think we have all caught up on sleep, being back together and in our routine.

Tuesday, May 10, 2011

Brayden has something against Mother's Day

Well, really just not a fan of the entire weekend.

Brayden screamed on Saturday.  He does not like wind or any sort of breeze lately.  He screams more for that than getting an IV.  The older boys have soccer, outside.  Where, guess what?  There is a breeze.  Brayden screamed his way through the soccer game and the rides in the car.

Brayden screamed on Sunday.  He cried and screamed and screamed and cried.  We went to church then out to lunch.  Well, the older boys and I had lunch while Jeremy and Brayden were sitting outside (in a non-breeze zone) because Brayden was not happy.  Hmmm, is this deja vu or did this happen last year too?  Later that evening, we headed back to church for Carter and Luke's award ceremony.  Brayden continued to cry and scream despite the effort of his Grandfather.  As tradition, we head out for ice cream after the ceremony.  Brayden continued to scream.  I sat outside with him.  Jeremy sat outside with him.  See the "smiles" while I am gritting my teeth...

Have you ever taken a ride in a car with a screaming child?  Is there anything more frustrating and exhausting?

Every part of the weekend included Brayden crying in the car.

Come Monday, a school day.  He cried on his way to school, at school and on his way home.  We considered keeping him home today but did not.  Not expecting a great report from school.

Jeremy and I were at our wits end.  Nothing seemed to help Brayden.  No clue as to the cause of all the screaming.  He seems so miserable and we can offer him very little help.

Friday, May 6, 2011

Could I conquer a kindergartner?

Throughout the school year, I have been able to volunteer in Luke's classroom every other week.  Although, with Brayden's schedule it has felt more like once a month.

I do enjoy being in the classroom.  Not only to see Luke in action, but to be around the adorable kindergartners.  They are still so little...little voices, little imaginations, etc.  I just love to listen and watch.

Yesterday, Brayden joined me for my volunteering time.  I wheeled Brayden into the classroom.  Luke was thrilled his was there.  The teacher did a great job explaining Brayden to a few curious kids.  Then I parked myself and Brayden at a table ready to do a center.  The first group came to the table. 

One child was extremely curious about Brayden.  This child touched Brayden, then touched him again and again.  I tried to tell the child not to touch him, partly because work needed to be done and because Brayden did not like it.  The touching turned into poking.  Then the poking turned into copying.  The child was copying Brayden's noises (like little dinosaur/lion roars) but then the copying turned into a making-fun-of copying.  Then just making fun of Brayden.  I asked that the copying stop, again because work needed to be done and making fun of someone needed to stop. 

My gentle suggestions to get back to work and leave Brayden alone seemed to be ignored.  Then it was time to switch groups.  Child was gone, Brayden was much happier as was I.

I have absolutely no problem with curiosity about Brayden (from adults or children).  Children are much quicker to accept some one new and a bit different.  Answering questions and talking to them about Brayden rarely bothers me...explaining him to others, not a problem.  Curiosity from children is usually the best because they ask the questions adults are too reserved to ask.

But what to do when it turns into something hurtful?

Wednesday, May 4, 2011

The doctors

Brayden's core group I would consider to be his pediatrician, neurologist, GI specialist and the nutritionist for the ketogenic clinic.  These doctors and their nurses are a vital part of Brayden's life, his medical care, coordination of Brayden's medical needs and my sanity.

During Brayden's hospital stays and ER visits this past month, each one of them was involved...

I called the pediatrician from a closet in a panic when Brayden was in radiology (Brayden's nurse was with him while I was calling from the storage closet) and they could not get his g-j tube back (I might tell you what really happened later).  She called another doctor in the hospital to help me figure out the steps we needed to take.  A couple weeks before that she gave me a hot tip on Georgetown Cupcakes.

While admitted to the first hospital, for the feeding tubes, the neurologist called my cell phone to check on Brayden.  Asked if we needed a neuro consult or if she needed to order additional medication.  Then in the ER for seizures, I emailed her and she called the ER doctor immediately.  Once at Children's hospital (we were at Fairfax for the feeding tubes, Children's for the seizures) she came to visit him in the room, talk to the neurology team on the floor, made suggestion for the best medications, and help us get home quickly.

By the grace of God, Brayden's GI doctor was at the hospital that week for his practice.  The GI doctor was an advocate for us.  We knew the procedures that were not an option for Brayden (i.e. nissin) despite a surgeon who was determined to give him one.  Then when Brayden was in the PICU, he came and told the ICU team that we were good at the medical things and very capable parents.

The ketogenic nutritionist was on the phone several times with the hospital dietitian making sure any IV, TPN and food was exactly the proper liquid mixture for Brayden's ketogenic diet.  Then once Brayden was in Children's she was the first face we saw in the room.  Just this week, I emailed her saying that Brayden was in the lab getting bloodwork done and if she needed to add anything.  She immediately responded, with the goal to minimize the trips to lab and try to get everything in one stop.

All of these people help us navigate Brayden's seemingly more and more complicated medical needs.

I was talking with a friend today about it all, sharing that these doctors and nurses become part of our regular routine and are a primary role in our support system.  We see them and talk to them more than family.  Brayden recognizes them and clearly knows when he is in a doctor office.  They know Brayden.  They know me.  I know the crazy came out a bit this last month and even so, there is a mutual respect.  I do not know what we would do with out them and the nurses.

I realize I am going on and on about his doctors...probably boring to most of you.  But I cannot stress enough what a difference they make in Brayden's life and mine...they help me NOT be the crazy mom.

Monday, May 2, 2011

The older boys

I worry about Carter and Luke.  I know that they handle things pretty well but they are just little boys whose lives can be chaotic because of Brayden.  They do love him and do their best to understand our circumstances.  The past few weeks have been stressful, to say the least.  Luke had a presentation that I missed,  Carter had my father into school for a presentation, the spring break trip to the beach was canceled, then back-up plans for amusement park and movies were canceled.  Jeremy and I barely saw them for two weeks; an hour here, an hour there.  I was feeling incredibly guilty that they were being disappointed with one thing after another.

Being concerned, I emailed Carter and Luke's teachers to let them know that we were at the hospital with their little brother.  I did not want work and/or any correspondence with school to fall through the cracks since the boys were with me one minute, neighbors, grandparents, etc.  The teachers are incredibly kind and I know watched out for the boys.  Carter mentioned to his class about his brother (most of the class knows Brayden).  Carter thought it would be a good idea for the class to make Brayden some cards.  He stood before the class describing what would work best for Brayden...he told them that Brayden likes turtles and bright colors; he picked pink, yellow and blue paper since Brayden seems to see those colors better than others.  Carter proudly pulled them out of his backpack for us to take to the hospital with a promise that Carter would read all of them to Brayden once he came home.

Luke then decided he needed to make some cards and then helped me gather toys to take to the hospital for Brayden.

Both boys wanted to come to the hospital to see Brayden.  Luke said he would sit in bed with him and read him books.  They did come visit one night and both were disappointed to leave.  They enjoy the cafeteria, video games and playroom.  After a while they just wanted everyone home.

Luke had a meltdown one afternoon.  Sobbing and clinging to me...he was tired from being at other's homes, had not eaten well and just was out of sorts.  He wanted everyone home.  I tucked him in blankets on the couch and he dozed off for a bit.

Thankfully, we have amazing friends and neighbors who treat our boys like stars.  All who came to the rescue with yummy treats, gift bags, even sleep-overs with a trip to Dave and Busters for some out of control fun (I owe you for that one).  The boys had time with their grandparents, whom they convinced they could have lots of junk food.

I want to protect them just as much I want to protect Brayden but in a different way.  For Brayden we fight for his health, for Carter and Luke I want to protect their hearts and minds.  I pray for them constantly.  I can only do so much, we pray for God to protect them, we let them pray for our lives as well.

Carter prays for Brayden, "to get better and be able to be more like us."
Luke prays, "Help Brayden not be sick anymore and feel more better."  Luke has been saying this prayer, the exact same words, for at least two years almost every night.

We talk about things the best we can, answer any their questions and try not to appear stressed...