Tuesday, March 31, 2009

Still has the yucks

Brayden still has some serious yucks. I know yuck is not a sophisticated medical term but it best describes Brayden at this moment.

He has lots of snot...tons of snot. It is draining and draining right down his throat. Since sitting up right or even being on his stomach is not much of an option for him. All of the draining is causing him to cough. A cough so hard that it turns into a vomit. When he vomits it is hard for him to get it under control. It is so violent and looks painful. The vomit is mostly the drainage, mixed with stomach bile and some drops of blood (ok that might have been too much information).

Brayden is now on some medication, the nebulizer and we are using that oh so wonderful nose sucking device (which every child loves...not really).

Even a bad cold is harder for him than my other boys. They can sit up, sleep on their side or back, blow their nose, tell me what I can do to help...

Monday, March 30, 2009

When is it too sick?

The past week has not been fun in our house. Everyone came down with some sort of bug. It felt like that bug was never going to leave. I am happy to announce that the bug is on its way out! But not without some drama.

As I mentioned in a previous post, Brayden was the first one sick. He got better, then Luke and then Carter. I thought Brayden was in the clear...

Think again.

On Saturday afternoon and evening, Brayden was out of it. Very out of it. Awake but as lethargic as someone could be and still be awake. It kind of creeped me out a bit. After some good daddy snuggle time watching college basketball, I scooped up Brayden to get ready for bed. Before I made it to his room, he started to vomit...in a very violent way. Remember, he still does not get food in his tummy so he was vomiting bile and it burns.

After he settled down (I had not), we put him in bed. Then Sunday morning I found him laying in vomit. Oh yes, bloody vomit. Can you feel my heart beating faster?! I stripped him down to get ready for a bath and checked his temperature. It read 102.5. I checked it again and again. Each time reading about the same. That is a high temp for Brayden whose normal temperature is around 97.

I immediately put him in the bath and called the doctor. I was some what preparing for a trip to the ER but really hoping we did not get to that point.

I was talking with the doctor about managing him at home and that became the plan. Some motrin, pedialyte and lots of loving.

Here is what I struggle with about Brayden...I have no idea what is ok and not ok for him being sick. When is it too much? What can his compromised body handle? What are the signs that something is really wrong? Will I know? Basically do I panic or not. My other two boys, I know what to do for them. They can tell me what is wrong or I can read their signs. Brayden, not so much. High temperatures, not good. Vomiting blood, not good. Extremely lethargic, not good. But what to do? Can I really manage things at home?

The remainder of the day and today Brayden is doing much better. His fever has gone down. He is congested and that is not comfortable when most of your life is on your back but we are able to do some nebulizer treatments and still giving him motrin.

Thankfully it seems as though the bug is finally leaving our house.

During bedtime prayers last night, Carter prayed for Brayden to feel better because he was tired of it.

Mommy is too.

Saturday, March 28, 2009

A day for Seizures

Today in Washington DC, there is the National Epilepsy Walk.

Living most of my life around Washington DC, I rarely pay attention to the happenings of the town. There are many walks, races, rallies, etc. However this walk caught my attention on the local news this week.

Today is about Epilepsy. Brayden has seizures. It is one of the many things that describes Brayden's medical history. Brayden has partial complex seizures. Seizures are a part of our daily life. Seizures effect so many people.

What exactly is a Epilepsy?

Epilepsy is a neurological condition that makes people susceptible to seizures. A seizure is a change in sensation, awareness, or behavior brought about by a brief electrical disturbance in the brain.
Seizures vary from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions. Some people have just one type of seizure. Others have more than one type.
Although they look different, all seizures are caused by the same thing: a sudden change in how the cells of the brain send electrical signals to each other.

I have asked around what seizures may feel like, since Brayden cannot tell me. Mostly I hear that they do not hurt. From stories of others, they tell me that coming out of a seizure can be confusing, like you are lost for a moment and then you are trying to get your bearings again.

I do not know what a seizure feels like. I do know what it feels like to watch one.

It feels like time moves in slow motion.

I desperately want to shake him out of it. It can be a scary thing. Standing there waiting...waiting for him to come back to you.

We track Brayden's seizures. From the moment he came home with us, I documented everything about his seizures. We count how long the seizures are, when they happen, Brayden's temperament, sleep, sickness, weather, etc. Anything to find a pattern. Something to give us a clue about his seizures.

His seizures seem to be ever changing. He is growing and his seizures are changing. We videotape the seizures to document and present to the neurologist. We want the doctor to understand exactly what we are seeing at home.

Brayden's seizures are somewhat controlled by medication. Brayden is currently on Keppra and Topamax. At this point, it has been the least amount of daily seizures that we have seen in a long time.

Seizures are a part of our life. The Epilepsy Foundation has a tag line, "not another moment lost to seizures." I could not agree more.

I got a phone call from a friend this week. Her children have a medical condition that is degenerative. The doctors told her that her daughter could start having seizures soon. Her phone call to me was asking about some odd movement and a brief moment that her daughter had in the middle of the night. I was saddened to share with her that it sounded like a seizure. It sounded like something I would say to describe one of Brayden's. She had talked with the doctor in the middle of the night and that is what the doctor said. Her daughter had a seizure.

Epilepsy does not only effect people with severe medical issues. Epilepsy effects many people, almost 3,000,000 Americans.

Oh and despite what happens in the movies, people cannot swallow their tongues while having a seizure...it is impossible.

Friday, March 27, 2009

Fever or not to Fever...that is the question

I have been offline for most of the week because some bug has hit our house. Starting last Saturday, Brayden screamed for three days straight. This is really not his M.O. so I was not quite sure what to do. He had a day with lots of seizures. This could be a tell tale sign of getting sick or growing or tired or who knows what else. I took his temperature several times throughout the three days...no fever. By the third day, Monday, we headed to the pediatrician.

Have you ever taken your child into the doctor and they seem to show no signs of being sick once you are finally in the office? Your child was sick and miserable at home and some how is not once the doctor sees them!

Thankfully that was not the case with Brayden. Oh he screamed in the pediatrician office. Screamed and screamed. So much that two families decided to sit in the hall rather than listen to him in the waiting room (ask me how I felt about their attitude and how it helped my attitude!).

After being examined, the conclusion was that Brayden may have hand, foot and mouth disease because of some sores in his mouth. Not too bad but very contagious. Brayden was extremely miserable so the doctors gave him some Tylenol with Codeine. That helped. It helped a lot.

The following day he was doing much better. But then...

Luke, the middle child, came down with the fever accompanied with some vomiting. Oh fun!

A couple of days later, Carter, the oldest, came down with a fever.

We were back at the pediatricians office today. Luke and Carter have some virus that we need to wait out.

We never get sick and we are not handling it well. Jeremy and I have been under the weather too. I got my first sinus infection that brought on my first case of laryngitis. The last time Carter was sick was a couple of years ago. And I cannot remember for Luke, so it has been a while. Brayden has never actually been sick before. I guess this can be one of his firsts. However with him being sick, it has brought up the question about regulation of his body temperature. He does not show a fever when he is sick? No one has answer to that question.

A fever is never a good thing but as a mom it is a great indicator that your child is ill. You can do things for a fever. A fever is a tell tale sign for a sick child. Once again Brayden leaves us guessing. Fever or not to fever...that is the question.

Friday, March 20, 2009

Try to Understand

I was flipping through a magazine this past week. I have not really been reading books lately, it takes too much mental effort that I am not up for right now. So instead I flip through magazines. I love reading the question and answer sections.

In this particular magazine, I noticed a question that kind of made my blood boil a bit. It was entitled Pet Peeve. Someone wrote in about screaming kids. She was very bothered by screaming kids while she was shopping. This women wondered if she was right to approach a mom of a screaming kid and say something about it.

Seriously! WHAT?!

Any mom knows that your child screaming in the store is not an enjoyable experience but it happens and it happens to the best parents. And if someone approached me at the store about getting my screaming child under control...do they really think that would help my situation?!

Try to understand. Please.

So this leads me up to my adventure in Walmart. Brayden was in his KidKart and I was pushing him around loading up his wheelchair with the things I needed (borderline tipping it because I loaded it down with too much stuff). Several times in the store I came across a little old lady who was riding around in a store scooter. Oh she was not nice, she was taking out anyone who was remotely in her way and exchanging not kind words. I did my best to avoid her. Well guess what happened...I ended up in line with her. I did my best not to make eye contact or do anything to provoke her. I could feel her looking at me and then Brayden.

I am thinking, please do not pick on Brayden. That will bring out my mother bear side.

She grabbed Brayden's hand and proceeded to scold me about taking care of my child. Brayden's hands were purple. The women gave me a quick but harsh lecture about keeping my child warm and if I was a responsible parent then he would be warm enough. We can't have a baby with cold hands!

I was flustered and did not say anything. Which is probably a good thing because what would have come out...well not good.

Depending on the day, Brayden's hands and feet are purple or glowing red. He does not have the best body temperature control. He hands may be purple but it happens without reason. Or his hands may be red from his body overcompensating to keep warm. This just happens. I am not an irresponsible parent who allows my child to be cold.

There was no way for this woman to understand.

A day later I had the privilege of joining two moms for dinner (Brayden tagged along and doesn't mind because he is a ladies man). These moms are wonderful. Both have children with special needs and very serious medical conditions. They are so understanding and have such bright spirits. They are able to laugh at the situations and cry. Being a mom to a child with huge medical issues is not an easy task. It was a wonderful evening. We talked about sending our little ones to school (I need some encouragement for that), insurance frustrations, funny stories, struggles, diapers, doctors, cheesecake...

It was nice to be understood. Understood by Laura and Shannon.

Saturday, March 14, 2009

All about the numbers

On Friday we were once again at Children's in DC.

The numbers we are watching - Brayden's weight. More calories in less time.

Brayden's weight remains that same. Not losing, not gaining. He obviously needs to gain weight. Thankfully no one (yet) has mentioned that lovely "failure to thrive" label. Seriously doctors...that label is terrible.

Over the past few months Brayden has been hooked up to his feeding pump for about 20 hours a day. 20 hours is not fun. It makes his life a little bit more difficult. To be hooked up to a machine for 20 hours, how could that be fun? The pump gives him 46 ml per hour. That is only 1.5 ounces per hour. And that is slow.
We have decorated his feeding contraption to add a little excitement. Some fun tinsel...Brayden likes the shiny. A little animal that plays music...Brayden likes the music.

Back to Children's; we meet with the nurse practitioner in the GI department. She handles only special needs patients. We will be seeing her for maintenance with Brayden's G-J tube. She is in full communication with Brayden's GI doctor. Their plan is to have Brayden increase his calories and the same time decrease the time for him to be hooked up to the feeding pump. We will be making his formula a bit more concentrated and increasing the flow per hour.

Brayden will be doing some quick weigh-ins with his pediatrician, showing weight gain and hopefully tolerating the increasing. Over the next little bit we are going to be working from 20 hours to 16 hours. If Brayden handles this well then we could move to 14 hours! That feels life changing. The less time he is hooked up the better.

The GI team does not consider Brayden to be out of the woods with the vomiting (a distant memory for us at this point). It has been over 4 months since the vomiting stopped. They want him to gain weight and do well with the increasing of calories and flow rate before we are able to even consider giving him food of any kind in his tummy/by mouth.

The doctor did give us permission to give Brayden tastes of food. Once a day for almost two weeks Brayden has had 2 tablespoons of baby food; sweet potatoes, squash and pears. And oh is he loving it. Amazingly he is handling the spoon pretty well...a far cry from where he was a year ago and not having anything in his mouth other than a toothbrush for 8+ months.

Oh how I wish we could feed him more. One of these days...

Tuesday, March 10, 2009

Transition to Special Ed

Brayden will be attending preschool in the fall.


That is correct. Brayden will be attending preschool in the fall.

If I tell myself that several times a day then maybe...just maybe I will be ready for him to go when the time comes.

Today was our first of many meetings transitioning Brayden from the Early Intervention program to Special Education with the public schools. Today's meeting was pretty simple; an explanation of the process and paperwork to sign. Our county's Early Intervention program is amazing. Brayden's current therapists are assisting with the transition to school and attend the meetings.

Preschool? Why so early? He is just a baby right!?

Brayden will be two years old next month! If we start the preschool transition now then his early intervention services can help us facilitate the process (this is a huge help for us and probably does not make much sense to anyone other than parents who have gone through a similar process).

Special Education Preschool is much different than regular preschool...
  • Brayden will be riding a special bus (I get choked up even thinking about that already and I will be following that bus for a while if not driving him). We can wheel him right on the bus in his KidKart.
  • Brayden will be attending an elementary school that is equipped with a special education preschool.
  • The classroom will have other children with special needs.
  • Brayden will more than likely receive physical therapy, occupational therapy, vision,... as part of school.
  • Brayden will more than likely attend just a few days a week. The amount of days and time will be determined at a future meeting.
  • Jeremy and I will attend many meetings for transition, eligibility, IEPs...
  • Lots of paperwork.
  • And tons more of things we will come to learn.
What do I think of it all?

I am not sure yet. I am pretty sure Brayden will enjoy school. He is social and enjoys being around people. He prefers to be around people. I, on the other hand, prefer him to be around me! I get overwhelmed thinking about sending him to a new place, with new people and new noises to try and process. His world is so small, only involving a few places and not a lot of people. Sending him to school is completely new, in every way.

What does Brayden think of it all?

Oh he slept through the entire meeting...snoring.
Looking something like this:

Sunday, March 8, 2009

They call it puppy love

Our new puppy, Gander, arrived yesterday.
After a long afternoon of running outside with every boy on the block, she was tired. We thought it would be a great time to introduce her to Brayden. The dog was mello.

We laid the puppy and Brayden on the floor next to each other.

The puppy was so sweet to Brayden, immediately taking to him and resting her head oh so gently on him. It was like she knew all about him.

And ended up falling asleep with her head on him.

Wednesday, March 4, 2009

Out with the Old, In with the New

Let's start with this past weekend.

Jeremy was bathing Brayden and mentioned that his G-J tube seemed very loose. As I was dressing him, after the bath, I saw a large red fleshy bump by his tube site. This is not normal nor something we have ever seen with Brayden's tubes.

I called the GI doctor on call. She asked us to fill the balloon, that holds the tube in place. We did that. It definitely made it tighter. Then she proceeded to explain that the fleshy bump we were seeing was the lining of the stomach that came out when the tube was loose and probably came out a bit. Umm...eww and do we panic?! No. We could wait and see the GI doctor sometime this week.

I called the GI office. I left a message. I waited and waited to hear something. I called again and they transferred me right to the GI doctor himself. He told us to come to Children's Hospital the following day for a contrast study to make sure the tube was properly placed and to check the bump.

We left the house this morning (myself, Brayden and Shari Jane who is Brayden's new respite care worker). Our normal 1 - 1.5 hour drive turned into over 2.5 hours. Lots of fender benders, traffic, every stoplight and even the Presidential motorcade to hold up traffic. We finally arrived and headed into the hospital.

We waited.

Brayden was an add-on so we waited. We waited almost two hours. They finally called us back.

Brayden was strapped down on the table of a Radiology room in his little hospital gown. The radiologist who works specifically with the GI department asked a few questions and then decided just to give Brayden a new tube.

I was not quite prepared for this. We have never had his G-J tube changed.

The doctor inserted a large wire into the J tube of Brayden's G-J tube, watching it on the monitor. The wire showed were the tube was placed. After small mumblings, the doctor pulled out the old G-J tube while keeping the metal wire in, using it as a guide. The old tube was dirty and the water balloon to hold it in was completely empty thus not really holding it in.

Ok, there is Brayden on a table...hole in his stomach. I guess I could poke my finger right into it...I did not.

The doctor prepped the new tube and slid it into place using the same wire. He watched it on the monitor. He filled the new water balloon, tightened up the tube and voila, Brayden has a new tube. It is so clean and sparkly. I did not realize how nasty his old one was until I saw the new one.

We are home now after a full day at Children's. Brayden is being feed using his new tube. No problem. Just another day in the life...