Tuesday, March 31, 2009
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
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...
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
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 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
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
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.
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
Tuesday, March 10, 2009
- 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.