Friday, May 17, 2013

Monday Update and In the Hospital

Monday, October 8, 2007

We have had a good day today, hopefully you could all tell by the video of Eliah laughing. We have been heading in the right direction with medications and he seems to be responding well. He has been taken off oxygen and is able to breath room air. YAY. One less tube/wire to deal with.

The EEG this morning showed that the 5 meds were a good combination. He only had one, minor, 30 second seizure. YAY. He was awake for a long time today and we played and interacted. He was also able to eat from the bottle today. They did not take the feeding tube out though, because he may need it over the course of the night. They plan on giving a couple load doses of medication during the night. The object is to break the cycle of seizures, then we can start backing off the medications.

The doctor came in this morning and said that his Hemoglobin had plummeted over the night. So they took blood for the genetic testing and gave him a blood transfusion. Then, his blood pressure went really high, so they gave him another drug to make him pee, in the hopes of reducing his overall fluid. The kidney ultrasound did not show any problems, so we are back to square one with his blood pressure. It's still just too high to be normal. Today it ran around 150/75, even after the "pee drug".

When I was talking with the Hematologist, he again said that this is not typical of Hemophilia. He also said that if this had been an adult, with this amount of bleeding and seizures, they would be dead. So he has been amazed that Eliah is even around, much less alert and active. He then went on to say that all the doctors believe that there is an underlying issue with Eliah, beyond the Hemophilia. He says that they have exhausted all their resources as to finding out what's going on with him, with the exception of Genetics. He suggested that we go to Emory in Atlanta or Duke in Chapel Hill to see specialists that can search deeper.

The genetic testing should hopefully come back on Friday, but we don't know if they will have answers for us. The Neurologist still wants to do a Spinal Tap to test for other genetic disorders this week. He also wants to do another EEG tomorrow to see if we have completely stopped the seizures. If we have, and all other things go well, we can once again leave the ICU. We have a tentative plan to leave the hospital altogether by Friday or Monday. We still have to learn CPR and how to administer his clotting factor before we leave.

The Neurologist was explaining to us about the calcifications on Eliah's ventricles. It is more likely than not that it is due to a disorder or syndrome. We just have to narrow down what it is. The only other possibility for the calcifications is intra-ventricular bleeding on his brain. However, it's not consistent with the other bleeding, and does not account for the small size of his brain.

We are trying to be very optimistic and realistic at the same time. We hope for a life of normalcy for Eliah, but we are prepared for a high level of care. I believe all the prayers got him through the last week, and we hope that those prayers will get us through many years to come.

Thanks again for keeping us in your thoughts.

In the Hospital

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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