Friday, May 24, 2013

That right leg is wrong

Brayden went to see his ortho doctor.  Brayden's right leg has really been bothering him.  I noticed it, especially in the car seat.  His nurse has noticed it as well as the people at school, so much so that they stopped doing any weight bearing activities for his legs.  

He has been seeing this ortho doctor since he was a baby for almost every three months...she knows Brayden.  The doctor looked at him and with one touch to his leg, she immediately said that his leg felt different and he seemed in pain beyond just being tight.

So Brayden had x-rays.  The x-rays were painful, trying to position his leg for the best pictures. 

It seems Brayden may have/had a slight fracture on the back of his femur; a fracture on the outside, that runs almost parallel with the bone.  It may have happened a few weeks ago since we could see the bright white on the x-ray film showing new growth.  There was also a slight (tiny, tiny) possible fracture in the femur in the front.  There is no need to cast Brayden since it is not a major break and she worries that casting him will not help much anyway.  Brayden will be getting another round of Botox, specifically targeting his right leg on June 11. The good news, the problem was not his hip.  I was really worried he was moving into some hip problems, which can be a huge problem.
That right leg is pulled up so tight, he is protecting it.  He winces with pain when we move him the wrong way.  There is really no way of really knowing how it happened...unfortunately really just part having CP, being completely dependant upon people moving him and this time the doctor called him osteopenic.

That was the first time she has used that word, osteopenic, to describe Brayden...which could open a whole other can of worms.

Friday, May 17, 2013

Had to call the doctor

Brayden GI system and a fickle thing.
Sometimes it works, sometimes it does not.  And there rarely is an explanation for any of it.

Brayden recently has a violent vomiting spell.

That morning I was at the doctor with Luke getting his stitches removed.  When we left the building I noticed a voice mail from Brayden's nurse.  She rarely calls me, it is usually a quick little text here and there.  The fact that she called me caused me to worry.

I called her back.  She described Brayden's vomiting that morning.  Brayden was vomiting blood and a lot of ground blood.  Brayden's nurse has seen him vomit a lot but this was the first time she experienced the blood (he used to vomit blood all the time and we would end up in the hospital).

I got Luke to school and headed home.  Brayden was resting and I knew I needed to call his doctor.

I was already preparing my reasoning for not going to the hospital and managing him at home.

Deep breath and I called.  I spoke to the desk worker, she was going to leave the doctor a message but as soon as I said "vomiting blood" I was quickly transferred to Brayden's doctor.  Thankfully, Brayden's doctor has been with him through a lot of hospital stays and vomiting problems.

The doctor, of course, suggest the action of going to the hospital.  I contest a little and tt was decided to turn off Brayden's food for a few hours, then start him on Pedialyte (he cannot have a lot because of the ketogenic diet), all to give him a little gut rest.  If Brayden vomited one more time and it was bloody, we had to head to the ER immediately.

Thankfully, Brayden did not vomit anymore blood.  Hospital was avoided, however stress was not how quickly those old days of constant vomiting came rushing back.

Tuesday, May 14, 2013

A little more help please

Carter and Luke are amazing brothers to Brayden.  They love him and take such good care of him.  They have seen more medical things than most adults.  Many, many times they have helped me clean up Brayden after a good diaper blow out or a major vomit.

Last night I was driving on route 15 during rush hour.  All three boys in the back.  We were going to take Carter to basketball practice.

Brayden started that delightful gagging/coughing noise that he does oh so well.  Carter shouted, "I think Brayden is going to throw up."  I did not think Brayden was really going to (since he coughs like that many times a day) but I asked Carter to put a rag under Brayden's chin just in case.

As Carter placed the rag under Brayden's chin.  Brayden started to spew and it was not stopping.  All over Carter, running down Brayden's arm and leg...then pooling on top of Carter's basketball bag.

Let me remind you, Brayden does not eat by mouth nor does he get anything in to his stomach other than one medication.  So he is really just vomiting stomach secretions and such (it is no where near as terrible as if Carter or Luke started throwing up in the car) but this time it was a lot of vomit.

I am still driving trying to decide if I should pull of the road or drive ahead.  Brayden was not stopping so I needed to stop.  But I look in my rear view mirror and Carter is hanging his head out of the window.  Apparently all of Brayden's vomiting was making him a little ill.  And he was even more grossed out that it was pooling on his basketball bag.  Really, how many times has this happened...hundreds of times and now he is getting grossed out?!

Then Luke is in the back of the car passing up one little wipe to try and help.

I pull off the road.  Brayden is soaked and completely covered in his own vomit. Carter is still hanging his head out of the window and refuses to even look at the pool of vomit on his bag, let alone clean it up.  Brayden has completely filled the rag and Luke is trying to help with his tiny little wipe.  Luke finally passes up the entire package of wipes and we start cleaning up the mess.

Carter is now a little late for basketball.  We pull up and a wonderful friend (K) offers to drive Carter home, even though it is out of her way, so we don't have to stay.  And it was a good thing because Brayden was going to go to basketball practice naked only covered by a blanket.

Wednesday, May 8, 2013

One of those things not to yell across any room...

would be a woman's weight.


Weighing Brayden is a task all in its self.  When he was little (and he was scrawny and little for a long time) we could some how manage to squeeze him on a baby scale.  Once he no longer fit, that is when audience participation is required.

We (meaning Brayden's nurse or I) get on the scale to be weighed.  Then we stand on the same scale holding Brayden.  Then subtract the difference and there you have Brayden's weight.

At a recent appointment, we did the weight dance...on and off the scale.  Brayden's nurse walked on to the scale.  The office nurse shouted out her weight across the office for the other office nurse to record.  Her weight not holding Brayden. I started laughing and tried to make a joke about never yelling a women's weight...that could be a public embarrassment.  A little lesson in office etiquette was needed.

Monday, May 6, 2013

You make me wanna roll my windows down

Remember being in high school, how cool you felt to have the windows down and music blasting on those warm spring and summer days.

Well, Brayden and I had a trip to WV yesterday.  We were meeting up with the boys for Carter's basketball tournament.  The moment I loaded Brayden into the car, he starting screaming.  And he screamed for the next hour, pretty much the entire trip.  It sounded more like a temper tantrum than anything else.  He just seemed mad to be in the car.

There are few things more exhausting and frustrating than your child screaming in the car.  It makes me crazy, there is little you can do to improve the situation.  Brayden continued to scream...and I continued to get more and more frustrated.  

Finally I could not take it anymore.  All of the windows were rolled down (and I blasted the heat since it was not very warm in the morning).  I tried to drown out the noise for the next 20 minutes, to no avail.  Then came the radio, I am not sure even what we were listening to, but some how crossing the mountain in to WV, most of the stations turned into country music (heard an interesting mix of country and rap, thus the title of this post...I had to google right now to make sure I heard it correctly).  I did not care what we were listening to, just something to drown out his screaming and my thoughts of going crazy.  He made me wanna roll my windows down and have the radio up.

We finally arrived but I was so frazzled I missed the turn not once but twice.  Then I parked, got out of the car, paced the parking lot for a few minutes and finally unloaded Brayden...

who immediately stopped screaming when I put him in his jogger chair.

Tell me he doesn't know what is going on.

Sunday, May 5, 2013

A little workout

I had to work some things out on Friday.

We had the driveway and part of the road in front our house fixed.  The crew did not start the major work until after I got Brayden on his bus.  Brayden's bus comes to the end of our driveway (very convenient).

However, Brayden could not come home on the bus.  The bus lift opens up right on top of our driveway...not going to work when they are working on it.  And the trucks and equipment were filling the road too much for the bus to get through properly (and Brayden's afternoon bus driver seems a little grouchy and it would have probably upset her).  So I picked Brayden up from school.  It is always fun to see him at school in his environment, outside of home.

Brayden and I arrived home, parked on the street.  I ran into the house to grab his jogger wheelchair,  I wheeled his jogger down the front yard to my car and loaded him in.  We walked down the street to get Carter and Luke from their bus stop.

Oh the walk back up the hill...going down it always seems like a nice walk but the walk back up...our road is a bit steep and it is a work out to push Brayden back up (his 40+ pounds plus the weight of his chair).  Carter and Luke were not much help since they had field day all day at school...lets just say they were need of good food and rest.

We finally made it up the street (sweaty and fussing, but we all made it).  Then we had to figure out how to get Brayden up to the house since we could not use the driveway.  Carter, Luke and I, all pushed Brayden, in his chair, up the front hill (and the picture does not do that hill justice, it is much steeper than it looks, I am not just being a wimp).  The grass was thick and seemed like we were just pushing him into the ground and not up the hill.

We finally made it to the top and inside.

Oh how much I like to pull our car right into the garage.

Wednesday, May 1, 2013

Message shirt

In case you did not know, I am a sucker for message t-shirts.  Actually, I am kind of not a fan of them for Carter and Luke, I don't want them to seem bratty.  But give me a good message shirt for Brayden and I will  put it on him, no problem.

Looking through the racks I came upon this one...SICK GAME...others might not find this shirt funny when your child is actually sick (may be a little "sick" humor, sorry couldn't help it).

I did not purchase the shirt but snapped a picture to send to a friend, asked if I should pick one up for her son that was in the hospital, kidding (she and I have the same kind of humor and can find just about anything to laugh about). Thankfully she found it funny and sent me a picture of this one she found.

I, of course, thought her find was quite funny, especially since a lot of the conversations I have with her include some talk about poop and the need for our child to go.

What are some goodies you have found?!