An afternoon of chaos

A Friday.  Just Brayden and I.  The nurse worked different days this week so she was not there on Friday.  Carter and Luke were at school.  Brayden and I were headed out to run a few errands.  First stop to get a haircut (pictures later).  Then the bank and dry cleaners.

Brayden started screaming in the car.  A peculiar cry for him.  I noticed his arms and legs jerking.  I watched it while in the bank drive through, then to the dry cleaner parking lot.  I pulled him out of the car and could feel it...he was having a seizure.  A seizure that is not his typical daily seizure.  This seizure looked much worse than something I have seen in a while.  His arms were banging above his head.  His legs jerking (which does happen sometimes).  And this scream/cry.  In between the jerking and banging, he was screaming.  A scream like he was trapped.  As if he knew he was stuck in a seizure and could not get out...it was an awful noise.

I grabbed the Diastat and gave him the medication in the back of the car.  Waited a few minutes.  Carried him into the dry cleaners, still in a seizure, to drop off the clothes.  Waited a few more minutes.  Still seizing.  I loaded him in the car to drive home, hoping the medication would take affect.

Still screaming and seizing.  I call Jeremy.  Luke has a presentation in about 30 minutes in front of his class and the parents...and I had his props with me in the car.  I realize that I need to call 911 for Brayden, seizure still going.  Jeremy starts driving towards Waterford for Luke's presentation.

A mile from home, I get a call from the school.  Carter is sick with a fever in the nurse's office and I need to pick him up.  I told them I would be there shortly, however Brayden is still seizing and not getting better.  I call the school back and actually asked (not mother-of-the-year moment), "How sick is he?  Is he just tired?  Do I really need to come get him?"  I decide to drive straight to the school; run in, drop of Luke's props, tell him daddy was coming, grab Carter (my car parked in the fire lane, Brayden in the car seizing) and head home.

Finally arrive home, take Brayden to his bed and he is still seizing.  I call 911.  The crew arrives and then the medic...I do not know a single one of them (usually we know at least a couple of them).  I feel like I need to keep explaining things.  Brayden came out of the seizure before he was loaded into the ambulance.  But he was very deep into the postictal state and absolutely unresponsive...even to painful stimulus - no response.

I know the Diastat knocks him out a bit but this seizure really took it out of him.  The seizure lasted at least 2 hours.

We drive to the ER.  The doctor and the two nurses were people that have helped Brayden several times in the past...which makes it all much easier.  After a little discussion, we all decide to just watch Brayden, make sure he comes out of this postictal state and does not go back into the seizure (no IVs or tests, thank you).  Meanwhile, the ER doctor will check in with Brayden's neurologist at Childrens.  The ER doctor talks to the neuro then passes the phone to me.  We all agree that Brayden is fine to go home.  No changes to his medications unless another prolonged seizure happens in the next couple of weeks.

The ironic thing - on Thursday we were downtown at Children's for the ketogenic clinic (will blog about all of that appointment later).  We talked with the nutritionist and neurologist.  I said, "Brayden has not had a prolonged seizure for a long time.  We have not have to call for an ambulance in several months...a record for him."  All considered his medications and diet was doing great and we could wean off one of his medications.

A little time in the ER and Brayden starts waking up.  By the time we arrive home, Brayden was all smiles as if the seizure never happened.

The lame things that I get excited about

• Medical supplies arrive on time and correct - you would not believe how often it is messed up, back ordered, etc.
• I can pick up several prescriptions at one time (why it is that of his 10+ medications, they never seem to be coordinated for refills...at the pharmacy too much)
• Free medical supplies or samples - our version of the swag bag
• Poop in the morning - usually means it is out of the way for the day
• Sunshine - not loading a wheelchair in the rain...it seems to take longer on rainy days
• Scheduled doctor appts - a plan, I like plans
• Food is made - having a nurse is wonderful, not only because I can get out but because she makes Brayden's food.  A mixture of several things for his ketogenic diet that requires measuring and weighing, for some reason I just do not like to make his food, I would rather change a diaper.
• Finishing his food - Brayden is hooked up for more than 20 hours in a day.  When he is not attached to his tube with the feeding pump, it feels so freeing and much easier to hold him and take him around.
• Opening up a hospital or doctor bill to see a zero balance.  I spend too much time on the phone making sure that each thing is processed through BOTH of his insurance co.  Opening up a bill to find a big balance means back to the phone because things were not processed correctly.

Not lame thing I get excited about is kissing him goodnight.  His little face just asking to be kissed.

Team Shirts

Jeremy comes out with this shirt and says,

"I have a bunch of shirts for Carter and Luke's teams, it was about time I had a shirt for Brayden's team."

I ♥ Brayden

My sweet Brayden was nothing but sweet for Valentine's Day.  His nurse and teacher sent pictures of him loving life in the swing.

Oh how it makes my heart happy to see him happy.

Then he came home with his Valentine creations, painted with his chubby little hands (with help from school).

Be My Valentine

Brayden is ready for Valentine's Day...not awake yet but dressed with his Valentine's.  Roses for all of his friends, wrapped around his wheelchair, ready for school.

Perhaps he will wake up later to wish everyone a Happy Valentine's Day!

I am Justice Hear Me Roar

I have not posted much this past week.  Brayden had a good week at school, an actual good week...several consecutive days in a row of being content/happy.  He even had the opportunity to take the therapy dog for a walk at school.

Thank goodness Brayden had a good week because my heart and mind has been aching for our sweet friend Justice.  Justice is only a little bit older than Brayden.  She is one of four children to our wonderful friends.  Friends that we have known long before children.  Justice and Brayden have some of the same diagnoses.  We have been able to walk this life of having special needs children, as well as other children, with them.  And we live just miles from each other!

Over a week ago, Justice was taken to the hospital and in the ICU.  She has been fighting for her life after a volvulus, when the intestines become twisted.  After a few surgeries, infections, etc., she is still fighting. 

All of it makes you appreciate life even more and trust that God has a plan.

The outpouring of love to our sweet little friend has been amazing.  Justice is a little celebrity since she is a star or her very own book, I am Justice Hear Me Roar.  She and her mommy visited many schools and libraries for book readings...making her way into the local newspapers.

We all love this family so much and ask anyone and everyone we come in contact with to pray for her.

Looking good

Brayden's blood work and quick urine tests look fine.  The doctors were really checking his kidneys and they look good.  Not sure why his urine output seems so low but we are increasing the amount of water he gets in a day.

Then we had 3 straight days of Brayden being happy, making it through school and Carter's basketball game.  The next day he did not make it through Luke's wrestling met.  He was there but just not happy and screamed most of the morning.  In the afternoon he went into a bad seizure and we gave him one of the big meds.  Back to school on Monday and he was doing well.

Can I say he is happier now? That we can actually take him out in public?  That he does not scream to spend every moment in his bed?  Three days in a row of happiness is a record around here.

Collector

Ever watch the show American Pickers or Storage Wars?  People looking for some special item, something collectible or even just something to sell to those collectors.  Some people collect antiques, Stars Wars memorabilia, cars, etc. Watching such shows, I came realize that you can find a collector for just about anything (try to watch Hoarders, yikes).



While I am a collector, it is not something for fun.

That is correct.  I am collecting Brayden's urine.  For the next 24 hours, I am armed with urine collection bags.  Tip I learned from a few nurses, to cut a hole in the diaper to help it stay in the bag.

 

Did I mention it should be refriegerated?  That is delightful.

We will take the collection to the doctor tomorrow.  The concern - Brayden's diapers have been too dry.  We know exactly how much liquid he gets in a day, down to the ml.  He is hooked up to his feeding pump 20 hours a day, not mention the water flushes he gets throughout the day.  He should be having more wet diapers.  His nurse even thought I was changing his diapers before she came in the morning (she comes at 6:30 a.m. and I am not waking him to change the diaper). 

At least I am not collecting poop this time...

For Feeding Tubes

You can almost call me an advocate for feeding tubes.  While I do not want any child to have a feeding tube, it truly can make a dramatic difference.   In the past week, I have talked with a couple of families about feeding tubes and it got me thinking...

When Brayden was about 9 months old, we were in midst of a battle for him to eat by mouth.  Brayden was only able to nurse (6-8 times a day for at least 45 minutes, it felt like I was nursing all day and night and I could barely do anything else because there was no time...but I digress).  On good days, we could get a tablespoon of baby food in him.  We went to feeding therapy for many months.  We tried all kinds of feeding methods, all different tastes and textures, all different positions for him to sit, etc.  We even considered going to a feeding boot camp, an intensive program that was a full week of feeding therapy...we did not go because we needed to be here for Carter and Luke.

By about one year, Brayden was not making any progress with eating and his weight was becoming a concern.  I dreaded, I mean dreaded, hated, loathed, the idea of Brayden getting a feeding tube.  It felt like we were crossing over into a deeper, more special needs category, that I was not ready to handle...thinking, "feeding tubes are for those really medically fragile children"...that is not Brayden.

We talked with a few of Brayden's doctors and meet with the surgeon.  Brayden was then scheduled for his first feeding tube surgery when he was about 13 months old.

Brayden had the surgery, everything went pretty smoothly.  He had his first g-tube.  We were sent home with all of the gear and that started our monthly delivery of medical supplies to the house.

Of any tube to be coming out of one's body, a feeding tube must be one of the easiest.  It is not like an IV or central line.  The stomach is a lot tougher than those little veins.  The tube comes out and we have learned to put it back in at home.

As time passed I realized the benefits that do come along with a feeding tube:

• Very important:  These kiddos handle so much just getting through the day.  They need all their strength, which is what food helps provide.
• All of the health problems that come with lack of nutrition can potentially be diminished with the help of a feeding tube.  Malnourished is not pretty...Brayden's bones were pointing out, loosing hair, muscle to help hold him straight, poor sleep, grouchy, possibly bone problems, etc.
• You know the calories/intake.  No more force feeding (or adding those calorie booster ingredients) just to make sure they get some nutrition.
• They can still enjoy food even on the feeding tube.  Nutrition from the feeding tube.  Everything else by mouth is a bonus!  Eating does not have to be a battle.  They can learn to enjoy it.  Eating can be delightful when someone is not stressed out and forcing a spoon in your mouth.
• Hydrated, flushing fluids right into the tube.  We could not get Brayden to take liquids.
• Medications!  This is an ultimate bonus in our house.  Medications slide right down that tube.  Before the tube, we would have to place the syringe in the back corner of Brayden's mouth, slowly push out the medications and close mouth...trying to make sure it all went it.  What to do about those seizure medications that come rolling out his mouth, wondering how much went in, do we give him more, etc?
• Peace of mind, as a parent you know that your child is getting nutrition.  A side note - many parents do a blended diet if you do not want to only do formulas.

Brayden does have a g-tube and a j-tube.  Not because of tube problems, we learned over time that Brayden's GI system is not always working properly.

Feeding tubes get support from me (still would rather not have one but it certainly helps).