Monday, September 5, 2011

10 Weeks!

Weight Check
William - 4lbs 6.8 oz
Aaron - 4lbs (Finally!)

We're starting to get a bit antsy to get the boys home. William's spells continue, but are decreasing...hopefully they will decrease to a complete stop SOON. Aaron's liver functioning is still in question, and his weight gain has plateaued...hopefully he gets it back together SOON. We can see the light at the end of the tunnel but just can't get there fast enough.

Aaron's liver issues are likely attributable to the CMV virus. The virus will run its course and usually shows no symptoms for healthy individuals. He received a shot of vitamin K yesterday to see if his decreased clotting ability was due to decreased liver functioning or lack of vitamin K - we don't know the results yet, but hope it was just a vitamin deficiency. His potassium levels were up today, which is a good sign. There's no proven treatment for the CMV virus, but he would be treated with an antiviral IV drug if his liver functioning gets to a certain point (We're NOT at this point, and hopefully won't get there). The drug is a 6 week IV course - I was afraid at first that he would need to stay in the hospital for this, but the doctor said it should not change his discharge date (whenever that may be). He would be able to come home with an IV, and a home care nurse would visit to change/check it.

William's liver functioning is getting better, but the doctor is still trying to figure out what's causing his issues if he doesn't have the CMV virus like Aaron. This is where we strongly disagree with the doctors. I've expressed my concern but apparently don't have any power over this. In our opinion, they just need to retest him for the virus - it's a simple urine test. He could have it but not have shed any in his urine for the last test. If Aaron has it and they're showing similar symptoms at the same time, it's highly likely that William has it too. Instead, they are poking and pricking him for more and more blood in order to test for every virus/disease under the sun that would impact the liver - conditions that would have to come from me, or from the blood transfusions. I KNOW I don't have any of it, and the likelihood that he'd get them from well screened blood is less than minimal. If these tests turn out negative, and they will, THEN they'll go back and re-test him for CMV. Completely backwards. We're also not super happy that they had been pushing his testicles back up and out of the scrotum for a month. Poor little guy :(

So, while we know they're getting great care at the hospital...they'll get better care with us. They really just need love right now. Please keep the prayers up for both of them to be healthy enough to come home soon!

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