Sick and still home

Brayden has been running a fever for the past several days. Something viral that brings a fever, diarrhea and a little bit of extra vomiting. He acts like he is feeling better.

It seems as though this virus, lowered his threshold for seizures and caused the massive one this past week. Thankfully no major seizure episodes since.

The huge amount of diastat, valium and several doses of ativan are finally making their way out of his system. It seems like he has been in detox since the hospital, sleeping heavily and when awake, screaming. We were told the it could take several days for all of the heavy medications to metabolize.

Yesterday he was much better.

Meanwhile, the hospital called to schedule Brayden for a sleep study. He dsats in his sleep several times (so far he recovers on his own without medical intervention) and looking like he may need to be on oxygen (CPAP or nasal cannula) for bedtime.

And the neurologist called, the calcium in Brayden's urine is high. He may have early signs of kidney stones. One of his medications, Keppra, sometimes causes kidney stones. He has been on Keppra for over two years and it is the medication that had the best impact in his seizures. Brayden will be scheduled for a kidney ultrasound in the next couple of weeks.

It is non-stop action around here.

In shock

Let me just say that I am shocked that Brayden was sent home. The hospitals treated things so seriously, then he started looking better and they started talking about going home.

Why did they let him leave so quickly? Since seizures are part of his life then there was not much more to be done. The doctors wanted to make sure he came off the heavy medications fine and did not go back into a prolonged seizure. Brayden's neurologist told the doctors she was fine with him going home as long as we were comfortable with it.

The doctors said that Brayden was allowed to go home because he was doing better. We have nursing care, oxygen, monitors and all the gear at home.

Brayden slept great last night and doing fine this morning. Wiped out but fine.

Jeremy and I are still in shock and had a brief moment to discuss the days' events before crashing for the night.

We admitted to being really freaked out. Brayden's daily seizures last about 30 seconds. The prolonged seizures that he seems to have every few months are usually resolved quickly in the ER with a little dose of medication and we are sent home a couple of hours later.

Watching dose after dose being given to him and still seizing...no words to describe our thoughts.
With each dose an explanation of the complications that could come.

The doctor discussing him being intubated...
Thankfully he was not.

Transport to Children's...
Which he has done before but this time with sirens blazing and moving quickly.

Seizing for at least 8 hours.
Eyes rolled back in his head.
No response. Not even to all of the IV tries and blood draws.

Told he was to be in Intensive Care...
With all previous prolonged seizures, they were taken care of quickly in the ER. He has never been in ICU before or even admitted to the hospital because of a seizure.

Everyone treating things oh so seriously.
That tone and look the doctors and nurses give you. The pat on the back, asking me if I was okay.

I will say this once. I did not know how Brayden was going to come out of this. Eight hours of seizing, watching his little body fight to come out and it would not let him...terrifying. It was the first time I was truly scared of the outcome.

Brayden is a fighter. For being so fragile, he is so strong. Thank God for that.

Still here but doing better...Now going home!

Kind of a long explanation but I am trying to answer questions that we have been asked. And I am sitting in Brayden's room with not much else to do...

Brayden was extremely out of it yesterday (Tuesday). He was in a deep deep sleep for the majority of the day, the brief moments he was awake he was very upset. I spent most of the day in bed with him, cuddling him as tight as I could without setting off the monitors.

He slept pretty well through the night. His pulse ox went extremely low in his sleep, which we are finding that is not uncommon lately (we are waiting for a sleep study...another brief stay at Children's sometime this summer). As a result he is put back on oxygen. This is not a result of this prolonged seizure. When he goes into a deep sleep..he sleeps a little too deeply.

The high white blood cell count is no longer a concern. The explanation that I got was that a combination of the long seizure and lots medications could result in high WBCC. Since he has been here in the PICU, the count is back to a normal range. It appears there is no infection.

As for what caused the seizure, they do not know. Every few months Brayden seems to have break through seizures that are a major episode and require medical attention. This one was certainly his worst ever episode.

The game plan: He could to moved from the PICU as of yesterday afternoon but we are waiting for a bed in neurology. He will be watched to see if he returns to his baseline activity. Yesterday, he was not at all. This morning his eyes are open, very tired looking but understandably so and he is not moving much but he still hooked up to lots. His neurologist, who he has seen since a newborn, stopped by yesterday and talked for awhile. There will not be changes to his medications or the keto diet, since he has been doing so well (down from 5-6 small seizures a day to 1-2). This break-through prolonged seizure just might be what he does regardless of medications and diet. As for any damage because of the seizure she said any seizure long or short could cause damage, since they are part of his daily life then this is not too concerning. There will be a better game plan for any future prolonged seizures since he did not respond to medication very well this time around.

It looks like he will be discharged tomorrow. UPDATE: He is being sent home this afternoon because we have a nurse, medications, a monitor, oxygen, etc. all at home so they are comfortable for us to watch him from home! And we will check in with his regular doctors via email/phone.

Today we sit and wait. Thank you for your prayers.

As I was getting ready this morning, I heard the familiar tapping at my front door. We have many birds that find their reflection in our front door kick plate and tap at their new found friend. Most mornings there are some sparrows hoping around. The amount of bird poo and the annoying tapping is not my favorite thing. However this morning, I thought of the song His Eye in on the Sparrow (one of my favorites) based on Matthew 10:29-31

When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
and I know He watches me.

“Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

He knows Brayden. He knows Brayden's brain. He knows how much my heart aches when Brayden goes through this. There is so much comfort it that.

Seizure stopped and now we wait

Brayden seemed to come out of the seizure a little after 10:30 p.m. It lasted almost 8 hours.

He was admitted to the Pediatric Intensive Care Unit (PICU) at Children's at 11:30 p.m. He and Jeremy attempted to catch a couple of hours of sleep, without much success.

I am hanging with him today in the PICU. It looks like he might be moved to the neurology wing this evening.

The bloodwork is starting to come back and looks fine. His white blood cell count might have been high because of all the medications but I am not sure about that.

Today, Brayden is either in a deep sleep or awake and miserable/inconsolable. Sleeping is good. His vitals are still good and no respiratory problems. No idea what caused such a bad seizure or the ramifications of it.

There may be more blood work, EEG, starting him back to his regular feeds and waiting around for the doctors to decide a game plan.

The seizure that will not stop

In need of prayers,

Brayden is being transported from INOVA Loudoun to Children's in DC.
He has been seizing for over 6 hours.

I will try to recap.
About 2:45 p.m. we (myself and Brayden's nurse) noticed his eyes were looking a little loopy and his legs were jerking. Thinking he might be tired and trying to go to sleep we attempted to rock him and then put him in bed. Once we laid him down, we realized that he was seizing.
We gave him a Diastat, medication to give for prolonged seizures. It did nothing.
We gave him oxygen, not much help.
Called 911.
They arrived and gave him Valium...did nothing. And the seizure was getting worse, harder jerking and eyes doing crazy things.
Arrived in ER.
They gave him a dose of Ativan...did nothing.
Bloodwork came back fine except his white blood cell count was, in their words, "not just high but extremely high", so he must have an infection. He will be put on a general antibiotic and later looked at to find a possible source.
Meanwhile, he is still seizing.
Another dose of Ativan...it took the edge off but he still did not break out of the seizure.
Wait a while, then another dose of Ativan...again took the edge off but still in it.
Transport arrives to prep him for a ride to Children's.
Brayden is given an IV of Keppra and another dose of Ativan...helped a little but still seizing.

It is now 9:30 p.m. and Brayden is on his way from Loudoun to Children's. He is being admitted. We have no idea what the game plan is nor do the doctors. For tonight, they will try to control the seizure. Tomorrow look into why such a bad seizure and a reason for the high white blood cell count.

Pray for his little body. Seeing him in a seizure for so long is scary. Seizures can do some serious damage and he only has so much to work with. Amazingly, with a long seizure and serious medications, Brayden has not shown any signs of respiratory distress. His vitals remain strong but the seizure will not go away.

Stand Up

AFOs and shoes. Brayden does not seem to mind his AFOs at all. Finding shoes were a problem. I finally ordered some 2X wide from some shoe outlet online. Wouldn't you know it, the name of the shoe was Brayden, spelled just like his name. The shoes work great with the AFOs...which leads to...

Brayden's first time in the stander. Because he now has AFOs and proper shoes, he was ready for the stander. I was not able to come to the classroom to watch the first time. I sent in the video camera. He was in the stander for 20 minutes. The physical therapist straps him in and then cranks the stander to an upright position. Brayden fussed, played and even feel asleep.

Brayden in stander from Carrie Jenkins on Vimeo.

I will be in the classroom tomorrow to watch him in action.

Can you imagine what it would feel like to stand up for the first time ever? To feel pressure on your legs and feet for the first time? That has to be a strange sensation for him.

So many things...

going on this week. I will be back with more details.

Topics:
1. AFOs and shoes
2. Brayden first time in the stander
3. Back at Children's for the ketogenic clinic
4. Answered prayers for smiles
5. New furniture for Brayden's room

Prayers for Smiles

Several weeks ago, I talked with a mom who told me that one of her prayers early on for her child was to see a smile each day, to have a connection with her daughter. Things were tough but seeing a smile always helped.

That conversation has been in my thoughts. Smiling is not something that Brayden does on a regular basis. In fact he can go weeks and weeks without one, without showing any sign of happiness. I have NO idea how to make him smile (and he does not laugh, at least that we know of). If I was honest, I must say that lately that has been one of the hardest things...no smiles. He typically has a face of indifference or annoyance. But happy rarely happens. I have been praying to see him, his smiles, more of his personality.

Baa. Put it in the baby book!

Brayden does not make many noises. He does cry and fuss. He does let us know when he is upset. Sometimes (very, very rarely) he may grant us with a "talking" noise (a non-fussing noise)...to us there is no rhyme or reason when he may do them.

Last night we were sitting on the deck eating dinner when Brayden decided to make a few noises. He was chomping on his finger when...
Brayden said, "baa."
Carter and Luke jumped from their chairs.
Luke "Mommy, come quick Brayden said baa!"
Carter "He said his first word! Baa. Put it in the baby book!"
Luke, "Yeah the baby book. Cause he said baa, his first word."

Brayden said nothing else. He was silent for the remainder of the evening.

Picture for picture's sake

I am not one to get the boys pictures taken at a photography studio. I never seemed pleased with those posed photos with a forced smile (I think my boys are cute but their fake smile is dreadful).

For Brayden, I have, at least, done a photo for each birthday. I try to send out those photos to some family and friends that have been praying for us.

We tried photos again for turning 3.

Brayden was not in the mood. The photo place tried (awkwardly) to help position him for the optimal picture position. Holding his head is a challenge...holding is head for a photo is even more so.

Brayden looked extremely perturbed the entire time.

One half smile that they some how managed to capture.

He wiggled down and around from the propped up positions. Four adults were raising all kinds of ruckus to get his attention. Singing, clapping, waving toys, whistling, toys with noise... Can you guess why he was annoyed?

Oh wait...he got really still...oh dear a seizure. I did not tell the photographers because it was a little disappearing seizure and I just said he needed a break.

We got a picture. A 3 year old picture.

If you think I have it together...

well then you are mistaken. In light on mother's day, I reflected on my not so shining moments...more or less some bloopers of me being a mom.

First one that pops in to my mind: I am out shopping with Brayden. He just got his KidKart (wheelchair). For some reason I actually made it to the mall. I was thrilled! I did lots of shopping that day, making up for the months I had not. As I was looking through a sale rack, I noticed a lady come darting across the store. She grabbed Brayden's wheelchair. It appears that I loaded down his chair with all of the shopping bags and it was tipping over. How's that! I tipped over my kiddo in a wheelchair due to excessive shopping!

Second, there have been too many times when I have messed up his feeding tube. Like unplugged him in the car, left the pump in the car running...the formula leaking all over the car. Forgetting to tape his tube down so if comes undone and leaks all over him. Always a pleasant smell.

Third, Brayden seems to poop at inappropriate times and places. All of the medications and special diet makes for a mess and a smell so bad that your noses burns. One doctor visit, Brayden did his deed. We quickly changed him but there was no good place to get rid of the evidence, I did stuff it into a XL medical glove to help. The room smelled terrible. We left the examination room door open. The doctor came in and closed the door. His eyes started to water, he rolled back in his chair and opened the door without a word. I was laughing, the doctor was not.

I could go on and on but one last one comes to mind. It was some cold rainy day. I had all three boys. I was trying to unload everyone very quickly and get into a doctor's office, hoping not to get too wet or cold. We quickly scrambled to the door...it was one of those fancy heavy doors that the boys could not open to help me. We managed through that door and of course there is another one. As I am holding the door with my bum and pushing Brayden through...the wheelchair collapses. I did not put it together properly. It was like Brayden was falling in slow motion. Everyone in the office just watched, not one person helped. I said (maybe shouted) that I really needed some help. I was starting to sweat. One man, begrudgingly, came to hold the door so it did not close on Brayden in his collapsing wheelchair. And I finally got it together and probably gave everyone a little excitement for the morning.

Oh the fun...

Mother's Day

My Mother's day was nice...a few bumps but nice. Carter, Luke and Brayden had lots of goodies that they had made (Brayden painted a flower pot at school) and flowers for me.

It started with an alarm on one of our safes going off. It was going off because the batteries were low. It was going off at about 5:15 a.m. It woke up everyone in the house.

After the alarm was taken care of (which took way too long to fix), Jeremy made some breakfast. At breakfast was the discussion that it was Mother's day. The boys wished me a Happy Mother's Day. Then Carter asked when it would be Father's Day. Luke asked when it would be Kid's Day. We told him that there was no kid's day. He, of course, asked why. Jeremy responded with, "Luke, everyday is kid's day."

Brayden apparently thought it should be his day.

He screamed all the way to church (Jeremy was about to turn around and go home). He cried on and off during church; I did my best to console him. Then we went to lunch, at a delicious restaurant. Brayden cried on and off.

As Jeremy loaded him into the car, he leaned to me and said, "Why couldn't God at least have him not cry at lunch? At least not today." I assured Jeremy that lunch was still delicious and such a treat from appetizer to dessert.

He cried on and off the remainder of the day. Sometimes he has days like this without any rhyme or reason. He finally settled down shortly before bedtime when Carter and Luke climbed into bed with him and read books.

Apparently, Brayden did not get the memo that it was Mother's Day. Brayden wanted all the attention.

We have AFOs

Brayden picked up his first pair of AFOs today. I did not remember ordering something so jazzy...

He tried them on and was not happy about them at all. Then stomped his feet on his wheelchair. The noise or the hard feeling made him even more mad. After several minutes he settled in and did not seem to mind.

After the office, we headed to Stride Rite. We tried on several pairs of shoes; something that was wide enough for his extra wide feet and with the AFOs on (I don't think they make a quadruple wide). We found one pair and still it looks like the shoe is going to explode.

We might be giving those "special" ortho shoes a try (ugh) because he feet and AFOs barely fit.

The first day he keeps them on for an hour and add an hour after that each day. Eventually, it looks like he could be wearing them most of the day.

Toes in the paint

Brayden did a little artwork...with his feet.






















.
.Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts. And we are never, ever the same.

When the odds are against you

The divorce rate for couples with special needs children is over 80%.

Over 80%. That is not very optimistic odds.

I understand why. This is hard. This is exhausting. This draining. This requires more effort than we think we have to give. We give all of our effort to our children. At the end of day, there is not much left.

The children need all of the care. All of the focus is on them. The children have all kinds of help through therapy, doctors, educators, etc.

What about the parents?

Many times, Jeremy and I have said to people that Brayden (Carter and Luke too) is well taken care of, we are the ones who need prayer and help.

.

If you are a family with a special needs child...find support for your relationship with your spouse.

If you know a family with a special needs child...offer support to the parents. Pray, pray hard for those relationships.

.

I talked with someone recently who is the process of getting a divorce. They have a special needs child. I cannot get them off my mind. I cannot stop thinking about the overwhelming odds against us. My heart hurts for them, for families in similar situations.

.

You hope and pray that through trials and tough circumstances, relationships are solidified not torn apart.