Mr. Townes Update from Papa Kyle: Today is one of those days you are told to prepare for and even when you do, you still end up on your back. There was a lot of news, and big parts of it werent great. The brain scan we were waiting on came back, and when the neurologist came to our room to sit down and discuss it, we had knots in our stomaches. The determination is that Townes has bleeding on his brain, and the severity is still undetermined. Brain bleeding is not uncommon on preemie babies, and in fact we were told that it is present in one form or another in around 50% of them. However, severity is the issue, and on a scale that ranges from 1 (next to nothing) to 4 (bad; cause for real concern), we were told Townes is somewhere between 3 and 4. The key issue is fluctuation, as the neurologist told us that she was uncertain of whether this brain bleeding had occurred when Townes was still in the womb, when he was being delivered, when Amanda got sick or any time between any of those. They have scheduled to do a follow up scan in 48 hours, and every 48 hours after that to develop a timeline for anything that may be changing or to confirm that things are staying the same. At this point, the perfect results would be to come back identical to what they were today, as this indicates that the bleeding is old/finished and that now we just allow his body time to flush out the old blood and reduce the pressure back to normal. Townes has also had a lot of fluctuation in his blood pressure, respiratory rate, and liver function. His blood pressure has gone from high, to low, to normal and is currently stable. The respiratory rate was elevated, as he was no longer riding the ventilator and was breathing at about twice the rate he had the night before which more or less skipped past normal breathing and went right to overworking. He has the jaundice light on again because his bilirubin levels were high again. The neonatologist came in this evening and helped adjust the settings on his respirator so that his breathing slowed, his blood pressure stabilized some, and he was able to relax some and settle in for the evening. This neonatologist was incredibly helpful, offering up a myriad of information and also answering dozens of questions we were too in shock to ask the neurologist earlier in the day. She helped us feel a little less adrift and also hopeful for the brain scan follow ups. This woman was a saint. I have experienced a lot of different kinds of pain in my life, some voluntary and some accidental. I can say that the heartbreak Amanda and I felt today was something I dont even have a scale or vocabulary to quantify. The feeling of something inside you being torn apart by a force you have no control over and that you had no idea even existed is a thing I dont know that I could wish on anyone. Amanda and I are both taking things a day at a time now, and we are absorbing everything in pieces to help adapt slowly to whatever our new reality is as we progress. For a while I will continue to post both there and Facebook, but eventually will be moving his information there to give it the focus I want it to have. Apologies for its appearance the first couple of days as I get it together. We are also working on a support structure project for both our family and Townes, and we will have more on that this coming week. Thanks again to everyone for everything. We are lucky to have the family we have and the friends who are family too.
Posted on: Mon, 27 Jan 2014 03:10:40 +0000
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