Friday, May 17, 2013

Eliah back in hospital

Saturday, March 29, 2008

I don't know where to begin.  There are a ton of things going on.  So far, we are currently in PICU with Eliah and will be here until at least Monday.

It started on Wednesday, the 19th.  Eliah spent the entire day screaming.  Thursday he passed a kidney stone.  Then Friday, he started refusing to eat some of his meals and more screaming.  I thought it might be that he is teething, so I treated him with Tylenol.  We also did his clotting factor treatment that afternoon.  On Saturday, he was still screaming, so I called the Hematologist.  He said that Eliah may have bleeding somewhere, so he wanted us to do his infusion every 24 hours... and if not better by Monday, then call back. 

Monday seemed okay.  He kept refusing at least one his meals each day, and cried about an hour after each meal that he did eat.  Wednesday morning I thought maybe Eliah decided he didn't like the taste of his formula anymore (babies are weird like that).  And babies usually grow out of their milk allergies by six months, so I tried mixing a little "Gentlease" formula in.  All was well for about 4 hours, then the vomit hit the fan.  Poor Eliah spent about an hour throwing up and just drank a couple ounces of Pedialyte the rest of the day.  Thursday morning he woke up with another kidney stone.  He spent the rest of day screaming and refusing to eat.  Also, he seemed to be very cross-eyed.  So I called the Nephrologist (hypertension specialist) and he said to just go by the Children's ER to get an ultrasound done of Eliah's kidneys.  We have been here ever since.

So far, Eliah has had an ultrasound of his kidneys, a CT scan of his brain (they thought there may have been new bleeding), x-ray of his abdomen, MRI of his brain, 24 hour catheter (to check for stones) and an EEG.  Good news is that there is no evidence of new bleeding.  And there are no seizures.  Bad news, Eliah's blood pressure is out of control.  They are on their 3rd medication to try to treat it.  The second med they tried actually increased his blood pressure more.  The Nephrologist is VERY concerned about Eliah having a stroke.  In addition, we are having problems with Eliah's clotting factor. 

Without any treatment, Eliah normally has about 1% of the clotting factor "normal" people have.  Typically, you treat to get him up to 100%, and it has a half-life of 12 hours.  Which means, at 12 hours he is at 50% of what "normal" people have, 24 hours he is at 25%, 36 hours at 12.5%, and 48 hours he is down to about 7%.  And we treat him every 48 hours.  So that should be plenty of factor to prevent any new bleeding.  Eliah is one quirky dude, or so the tests say.  We have been measuring his clotting factor since we have been here.  We treat to 100%, and at 4 hours he is at 74%, 8 hours 4%, 12 hours 1%.  So if we treat him at 7pm on a Tuesday, by 7am he is back down to 1%, as if we never treated him at all.  All this time we thought he has been protected.

In addition, he is still refusing to eat.  He will drink about 2 ounces of formula, then scream for 1/2 hour.  He has had about 8 ounces of formula in the past 48 hours.  Normally, he downs 28oz + 2 jars per day.  They have plans to do a swallow test and CT of his abdomen on Monday, as well as a Spinal Tap to look for infections.  All the doctors are stumped with what's going on with Eliah.  They are suggesting that we high-tail it to Duke in the next couple of weeks.  Everyone is in agreement that he is not well, and it is most likely due to a "disorder" or "syndrome" that has yet to be diagnosed.  Duke should be able to figure that out.

We will update when possible.  Just keep Eliah in your thoughts and prayers.  Thanks!!!!

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