August 31, 2009

What a day! I feel as if I somehow wake up in the morning, sit in a hospital for a couple hours and then it is time to go to bed. I seriously worry sometimes how I actually made it to the end of the day without actually realizing the time. I get there in the morning at 9 a.m., listen to rounds and then it's time for lunch. Once I get back, I check on him and then it's midnight. I think I have what all the nurses have been warning us about, NICUITIS. I didn't know what they meant until now and I could not have come home at a better time. Don't get me wrong, there is no place I would rather be than with my son but it just starts to mess with your mind in a way I can't even put into words. You walk into the hospital and somehow enter some kind of space time continuum. Every time I look at the clock, what seems like minutes are actually hours and the sun rises and falls and somehow you miss it. Anyways, enough of listening to me ramble about my delusions.

This was another big day for Gabe, he got his new "big boy" ventilator. They wheeled it in about 11 am and set it up, finally making the transition about 12 pm. At first Gabe struggled at the new effort that he had to make to breathe, but soon became acclimated and settled down. He spent the rest of the day fairly comfortable and is impressing us all. The new ventilator and setting that he is on lets him initiate the breathe and then it fills in when he is unable to get a full breathe. That is the best way to describe it although there is a lot more happening. Gabe did not get the new chest tube that they had been talking about. The doctors felt that there isn't enough fluid to necessitate another chest tube on the right side. However, they are going to keep a close eye on him and if they see anymore fluid accumulate or his numbers start to drop they are going to get one in right away. So let's hope that nothing comes back.

They have increased Gabe's feeds so that they may test his lymphatic system. The doctors believe that Gabe has what is called a chylothorax. Basically what this means is that fats that he digests leak through his lymphatic system into his chest. Not good. They began feeding him yesterday and haven't seen the milky color in his chest tube that you would usually see. However, they are seeing the numbers that they usually see, so they are increasing the feeds to see if the milky color will come out. If he is positive for this, they have medication that can help. If this fails to work there are other options which require surgery and we aren't going to talk about that until we have to.

The good news it that Dr. "B" talked to me today about Gabe's MRI results. The MRI showed that Gabe's brain is normal in structure and doesn't have any injury, bleed or damage. He only said that it is underdeveloped for his age and this could be because he has been on a ventilator since he was born. I told the doctor that this was ok since his dear old dad had an undeveloped brain as well. I don't know if they got the humor, but if you know me you would laugh.

Tomorrow we are going to have a conference with the doctors to discuss all of the findings thus far. We will cover where we have been, where we are and where we are going. Hopefully we will hear a little more about the liver biopsy that we are all on the edge of our seat about. Thank you all again for your continued prayers and support of Gabe and our family. Talk to you again tomorrow as soon as we get out of our meeting.