Confirmation

Today we got back the results from Saturday's CT scan. Though we had already mostly made our decision based upon Andrew's long-term prospects, the images of his brain provided the confirmation that we needed to be sure. He has severe enlargement of the ventricles, which are open spaces filled with fluid in the center of the brain. Worse, he has extensive damage to his frontal lobe, which controls higher-order brain functions. The frontal lobe is generally considered the portion of the brain that makes us human, and plays a part in impulse control, judgment, language production, working memory, motor function, socialization, and spontaneity. Andrew's deficits are sizable; though the human brain can sometimes compensate for damage, those missing portions will never physically recover. These results essentially guarantee that he would never be able to progress to a normal adult mental capacity.

I realize that some of this seems sudden and overwhelming. Though this is his first brain CT, he has had previous brain ultrasounds that did not indicate this level of damage. Andrew's been very sick during the past couple of weeks, including infection, fever, digestive issues, and the necessity for higher levels of ventilation support. The longer infants remain on a ventilator, the more likely that long-term brain damage will result; these scans represent a not-unexpected complication that we have known was a serious possibility. They also correlate with recent signs of behavioral deficits that Andrew has shown.

What this all means, in the end, is that we have decided to remove Andrew from life support. This is obviously a difficult decision, one that no one should ever have to make for their child. However, after seeing the CT scan, I believe the progression of his disease has essentially made the decision for us. In anticipation of this outcome, we spent the weekend saying goodbye, and we are as close to at peace with it as one can be in this situation.

Tomorrow (Monday) we will go in to the hospital, meet one last time with the doctors, and say our final goodbyes to Andrew. After we spend some quality time with him, they will remove the ventilator tube and keep him comfortable with medication until he passes away. They will provide him with whatever he needs so that he won't suffer at all; at that level of sedation it will be completely peaceful. We'll also be able to hold him without any of the wires or tubes.

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Today we took lots of pictures, got hand- and foot-prints as keepsakes, and cut some of his hair to take home with us. We each got to hold him again, during which he was alert, interactive, and very comfortable. Knowing what we do about his progression and seeing firsthand some of the neurological signs that he's been having recently, it was especially rewarding to spend that time with him.

His primary nurses are on today and tomorrow, and some of his other favorites have also had him recently. All of the doctors and nurses are heavily invested in Andrew as well, and have been wonderfully supportive and compassionate through this difficult time; we know they'll miss him very much.

I don't know that I'll be in the mood for extensive writing tomorrow, but I will post something quick when it's over. We thank you again for your support through the last five months. I know it's been difficult for everyone, and that this abrupt ending may come as a shock and be very emotional for you all. One of my biggest regrets about the situation is that Andrew never got to meet the hundreds of people that have been pulling for him this entire time. It's not fair to any of you that his only method of interaction was through my comments on this blog...you all deserved to see him up close and personal the way that we did.

We hope that our loss can provide hope, and even salvation, for other parents like us in the future. We asked the organ donation program at the hospital to evaluate Andrew as a potential candidate. Due to the course of his disease and legal issues around the method of passing, he can't donate full organs; he can, however, provide tissues like heart valves and corneas, which can be lifesaving and/or life changing, for the recipients.

We will likely spend the next few days (at least) at home by ourselves. Though the arrangements haven't yet been made, Andrew will be cremated and we will not be having a formal funeral service. Though his short life was obviously tragic, his presence also provided us with great joy, and we don't think that a somber ceremony is an appropriate way to pay tribute. We may have an open house, either here or in Orange County, at some point in the next few weeks.