Friday, May 17, 2013

Tuesday Night Update, Friday Update, Update #3 and #4

Tuesday, October 9, 2007


Unfortunately, we are NOT home.  Sorry for the confusion... the emails you received earlier were all from the LAST time we were in the hospital... about a month or so ago.  For now, we're still here.  Also, please forgive us for the amount of email that has gone out... I think we have now fixed that.  Most of this stuff is new to us, and we are making some mistakes.  Not getting much sleep does nothing but add to this.

So anyway, back to today.  Not too much happened today.  Eliah did not sleep at all last night (and thus, neither did Ann)... so he slept a lot today, while I was on watch.  Which is fine with me.  He did get the feeding tube taken out.  However, he has not eaten hardly anything since then... we hope he does soon.  We don't want him to have to go back on it, if we can help it.  We also changed the needle that goes in his port on his chest.  Ann and I have to learn how to do this, because we will be doing this on a regular basis once we do finally go home.  He also got the EEG put back on his head... it will be there all night and into tomorrow.

About the only excitement we did manage to get today was a talk with the neurologist.  After talking with another neurosurgeon, he now thinks a lot may depend on the results of the EEG tomorrow.  Basically, he said if Eliah were in the same position, but did not have Hemophilia, they would already have performed brain surgery to help remove the blood in his brain.  But the Hemophilia has been a major concern to the neurosurgeons.  I guess it's tricky to work on someone's brain if they can't stop bleeding.  Now, however, Eliah has been getting great big doses of his Factor VIII Hemophilia medicine, which allows his blood to clot like a normal person.  Since his levels are way up and staying there, he should (in theory) be able to have surgery just like anyone else.  Thus, if his EEG overnight shows that he is still having seizures, they will talk to us tomorrow about performing some sort of surgery.  It most likely will involve drilling a small hole in his skull and sticking a needle in to suck the blood out.  And if they do decide to do it, I don't know if it would be tomorrow... or a week or more from now.  We'll find out and let you know.

He has, at least, been giggling and smiling a little more.  Those are the parts of the day we like the best.

- Kelley

Friday Update

Okay, the Hematology Dr. came in this morning and said that there is no evidence of internal bleeding based on the CT scan. It's possible that DS had a very small bleed (for instance, his front gum was purple where a tooth would be coming in). DS is hypersensitive to touch, smell, sound and temperature. He probably went nuts over something small.

We are still going to be here in the hospital, probably till Wednesday. The Neurologist is planning a 24hr EEG for tomorrow. There is an MRI scheduled for Tuesday morning. Today we have nothing planned, we just have to sit and wait (and look up scary info on the internet).

I will update when I have new info. And thanks so much for the prayers! We need them!

Update #2

Okay, the Neurologist spent a long time with us today. We went over his CT scan of his brain "bit by bit". When they said his brain was a little bit small, I thought he meant a regular brain but just a little bit smaller. NO. A normal brain basically comes right to the edge of the skull. DS's brain seems to be missing parts, especially on the left side. Completely not what I expected.

He also said that the calcifications on his brain are not tumors, which is really what we were hoping for. They can remove tumors and he would be able to have a somewhat normal life. Now we pretty much know that this is the result of a virus that I must have acquired during pregnancy. I think CMV is the worst case scenario for us because we understand that seizures only happen in extreme cases. And problems with CMV can get progressively worse as he ages.

Nobody is really speculating yet as to what is going on, but with tumors ruled out, that takes away pretty much anything else that causes calcifications on the brain.

I believe everything happens for a reason. It's just my job to adapt. Not always easy, but I have a great support network (including you wonderful, wonderful ladies!) and a compassionate, loving and understanding husband. I don't think I would be able to handle any of this without him.

Also, if you want to see what the EEG looks like, click here.
Scroll down to the bottom, and click on the very last pic of DS. The video may take a minute to load.

Update #3

Update #3

And the saga continues....
First they switched the MRI to today and the EEG to tomorrow. Then Hematologist came back in today after the MRI and said that going back over the CT and the MRI, it seems that DS did in fact have bleeding on his brain. He said that there was a hematoma right at the top of his head and there is a little bit of old blood there. So he is putting him back on the Factor VIII (which by the way is $700 per shot and he is getting every 8-12 hours).

He also said that everything and everybody is pointing to CMV. However, the Hematologist has doubt. He thinks that everything that is going on relates to Hemophilia. He is going to "pow-wow" with the Neurologist tomorrow and go over all the tests. We should have some lab tests back by tomorrow or Wednesday.

If it is CMV, I don't understand how I could have gone this long without getting it. I'm 34yrs old, for 10 years I worked in a day care setting and I also worked in assisted living. Approx. 85% of the US has this virus already, and it's passed just like chicken pox or mono. Plus, I have been pregnant 3 times before this. It just doesn't make sense that I would just now be getting it. (sorry for the rant)

We are supposed to get another update from the docs in the morning. If it's interesting I'll post. But if they are just sitting around saying, "I don't know, what do you think doctor?", I won't post.

Thanks again for all the well wishes. It feels so good knowing there are people out there thinking and praying for you.

Update #4

Update #4
Well, we are still at the hospital for one more night. He is finishing up his 24hr EEG and we should be able to leave in the morning. We have talked extensively to the Hematologist and the Neurologist today. I don't think I have ever asked so many questions. I believe I have a good understanding of what is going on. With that being said, there is not yet a definitive answer to what's wrong with DS.

Here is what we now know. The MRI shows that DS has a small pool of blood at the back of his brain. Also, he most likely had a prior bleed in the same place. The bleeding has indented or pushed in that part of the brain (the missing part I was talking about) and caused it to scar. He also has a lot of calcium at the top of his brain which is probably old blood that turned to calcium. This bleed probably happened in the womb or during birth. No way to know for sure. That makes three bleeds in his brain.

The Hematologist also believes that the calcium deposits on the inside of his ventricles on his brain are also old blood. The Neurologist isn't yet sold on this idea though. He still wants to do genetic testing. However, he said that these are not tumors, which is what they would have to be, to be a genetic problem. Plus the likelihood of having two rare genetic disorders would basically make DS an anomaly.

The CMV test came back negative. And the toxoplasmosis came back negative. There has been no evidence of Rubella either. So the congenital infections are ruled out.

The smaller brain could still be within the normal range, based on what the doc is saying. The Neurologist said that the surface texture and grooves of the brain look normal and that we should not expect to see any major developmental problems.

The plan at this point is to get a port (internal central line) put into his chest so that we can preventively treat his Hemophilia three times a week. This will hopefully stop any bleeding and we could potentially qualify for Soc security, of which we would put into a future fund for DS.

So, after this emotional roller coaster, it seems that it might all be something we can handle. He will continue to take his seizure medicine for months if not longer. And we will monitor him to determine if he has any delays. But for right now we breath.

Thank you all so much for keeping us in your thoughts and prayers. I believe it helped.

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