Friday, May 17, 2013

Sept 2007 posts

eliah james: September 2007
Sep 30, 2007 – Eliah had a good night. They woke him up around 4am to do labs and he woke up smiling. He opened his eyes and was talking up a storm.

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Eliah had a good night.  They woke him up around 4am to do labs and he woke up smiling.  He opened his eyes and was talking up a storm.  Lot of cooing.  We played until about 5:30 and then he went back to sleep.  He was even laughing, but it was VERY subdued.  I think the food is really helping him.

All is well at the hospital. Eliah's seizures have stopped. He is now taking food from the bottle, so the feeding tube came out. We gave him a tub bath and he just LOVED it. As of right now, he is sleeping soundly.

But nothing is really happening today. We will be doing another CT scan in the morning to determine if he has swelling. Also, Genetics should be coming tomorrow to do their own set of testing. To my knowledge, the surgery to put in the Broviac port is in the pipeline, but may not happen tomorrow.

One thing of interest though. My sister's daughter has an unknown metabolic disorder that, as I understand it, affects her conversion of protein in the body. When I talked with the Neurologist today, he found this to be extremely interesting. He apparently has a niece with a metabolic disorder, and her cousin has Hemophilia.

As I have been doing my diligent research on the internet, I have found a fairly new disorder that may account for both children. It is very easy to test for, so I will be asking about it tomorrow. But you know how the doctor's like to be told how to do their jobs. So, I will hopefully not be stepping on anyone's toes.

I will update as I can. And definitely, put us on any prayer list you can!

Eliah Update Saturday Night

Update Saturday Night

Last night was a little rough. Eliah had seizures that started around 1am and came every 20 minutes. Then, by 3am, they were coming every 2-3 minutes. They have increased a couple of his medications, added an antibiotic and also gave him the equivalent of Valium. He is pretty sleepy, but is very responsive to touch.

We also had another CT scan this morning, followed by the start of another 24hr EEG. We talked with the doctor after the CT, and he is still waiting at this time to talk with the radiologist, but this is what he thinks. First of all, he is AMAZED, based on the seizures, amount of blood on his brain, and the medications, that Eliah is not currently in a coma. He fully expected that to be the case. He said that Eliah's body is coping very well with the stress.

The doctor sees no change from yesterday's CT, which is good. He explained that about 3-4 days after a brain injury/bleeding you will see swelling. If the swelling puts too much pressure on his brain, they will need to operate and drain fluid. So far, he is holding steady.

He blew his IV today and they had to put in a new one. And of course, it took a couple sticks, in addition to the many, many blood tests they are continuing to stick him for.

Eliah has been placed on a feeding tube in the past hour and seems to be holding down the food pretty well. I was very anxious for him to start getting some nutrition so he can get stronger. A far cry from yesterday, he has got a lot of "fight" in him today.

That's about all for now. We are still waiting for the "official" results from today's CT scan. And they have added another MRI to the list of tests to perform in the next week.

Thanks again for all your thoughts and prayers!!!!!!!!!!!!!!!!!!!


Deja Vu all over again

The easiest thing for me to do is simply copy and paste a message that Ann wrote yesterday. It should answer most questions that come to mind.
Here it is:

If any of this is incoherent, it's because I have not slept since 1:45am Wednesday night. I'm a little tired.

We have been in the Pediatric Intensive Care Unit with Eliah since around 12am Friday morning. Eliah was cutting two teeth this week, so I of course I thought the fussiness and slight fever were normal. Well, Thursday night he was sleeping and looked like he was dreaming. Then, it just didn't feel right, so I tried to wake him up. He was unresponsive. We called the Neurologist and he said to give him his seizure medicine and head to the hospital. We arrived at the ER around 11:30pm and his seizures were very apparent. His head was bobbing and his right arm was shaking. Needless to say, very scary.

They took a CT scan of his head and admitted us to PICU. They have determined that he has new, significant bleeding on his brain. According to one of the many doctors, there is a lot of blood in there. The blood basically works like sandpaper on the brain matter and causes seizures. Also, the bleeding caused him to have a fever of 102.3 and he was just shaking uncontrollably. We have seen a Neuro-surgeon who may want to remove the blood buildup, but he is not very familiar with Hemophilia, so he is concerned about causing new bleeding.

Also, they have been unable to stop the seizures. Eliah is on three different medications; massive doses of anti-convulsive and they are still breaking through. He has been hooked up to the EEG and they are recording all the seizures. Also, he is comatose from the last medication they gave him. The doctor really wants him to be "knocked out" for the next 2-3 days to stop bleeding and seizures. However, they have to keep close eyes on him to make sure he continues to breath. They may have to put him on the ventilator.

In addition, they believe that fluid is building up in his brain causing pressure, AND his brain is shrinking. Both, as you can imagine, are not good things. As we expected, we will be watching for developmental delays. Once again, we are on the roller coaster.

Updated Friday evening:

Let's get down to it. It appears that his brain is still smaller than what it should be, BUT, it is much larger than it was a month ago. There is less fluid, the ventricles are smaller, and the brain mass is now growing towards the skull. That part is great!

The bad part, he has 3 layers of bleeding on his brain, a current bleed from 2-3 days ago, one from about 2-3 weeks ago, and one from around birth. The whole left side of his brain is covered in a lot of blood. So much in fact, that it is pushing in brain matter on the side. This is the irritation that is causing these seizures. They measured about 10-12 in the 4 hours they did the EEG.

So what the doctors are wanting to do now is potentially put in a shunt to drain spinal fluid from around his brain down into his abdomen to be absorbed by the body. Which will give his brain the opportunity to grow more as it should. That procedure will be discussed over the next couple of months. The blood in his brain would not be affected by the shunt, and hopefully will just absorb or disintegrate over the next 6 months to a year.

Immediately, the Hematologist will be surgically implanting a Broviac port so that we will be giving his clotting factor three times a week to prevent new bleeds. That will probably happen on Monday.

They are also monitoring him for more seizures. He seems to be doing okay, just sleeping all the time. He hasn't eaten since 2:30am, but he is on an IV so it's not so bad.

Also, (will the fun never end?) they are probably going to do a Spinal tap when he is feeling a little bit better to test for infections as well as some neurological disorders. We really don't know when that will happen.

That's all the info I have for now. Lots of love to all and please keep us in your thoughts and prayers!

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