Friday, May 17, 2013

In the Hospital

Thursday, August 23, 2007

Well, if we didn't have enough problems with Hemophilia, we are now in the hospital for another reason.

It all started on Tuesday. DS (who is now 12 weeks) was really fussy and seemed to be spitting up more. He also seemed like he was in pain every time I picked him up. I really thought it was food related since our whole family just had a little bug. So I treated him with Mylanta. No change. I waited to see if he would get over it, but never did. By Thursday morning he seemed to be in a lot of pain whenever I picked him up. So, I think, okay he has some internal bleeding (not uncommon with Hemophilia). I called the Hematologist and he said to bring him in.

While the doctor was checking DS out, he notices that DS only looks to the left and isn't focusing. Which indicated to the dr. that it may be a head bleed. So they set up a CT scan to find where the bleeding is. Meanwhile, they set up an IV and pumped him full of the Hemophilia medicine (Factor VIII). The CT scan did not reveal bleeding in the head... but it did reveal something else. It seems that he has enlarged ventricles, a slightly smaller brain than normal, and calcium deposits lining one of the ventricles.

They brought in a neurologist, who thinks that DS was subjected to a viral infection in the womb. Further, he thinks that his only looking to the left and eye movement are seizures. He hooked up an EEG and last night recorded two seizures, about 13 minutes long for each. So now, they have him on seizure medicine. He also believes that he had a seizure on Thursday that lasted approx. 12 hours.

The hematologist still thinks there might have been a bleed, though... so we just got back from another CT scan of his neck and back. They're also doing blood tests to determine which viral infection he may have had early on. So now it's pretty much a waiting game to determine the cause. The effect, however, is a different story. From what we understand, regardless of the cause, it's just going to be a waiting game as he gets older to see what the effects are. Some who exhibit these brain characteristics seem to be able to grow around it and are not effected. Some end up severely retarded or have Cerebral Palsy. The only way to know is to wait and see.

We will be here in the hospital until at least Monday. They have started him on anti-seizure medication. They are continuing his Factor VIII every eight hours, and we are still giving him Zantac for his reflux. They plan to do an MRI later this week and they are going to hook him back up to the EEG to make sure they are stopping his seizures. If they aren't, they will have to move him to a different medication which may have physical or mental side effects.

We are also waiting to be contacted by a Geneticist to test for chromosomal abnormalities. There are so many possibilities that this could be. Regardless, he does have brain damage, we just don't know to what extent or how it will affect him. We are trying to stay informed and asking many, many questions. But, like I said, it's just a waiting game.

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