It was made very clear to us from day uno that we are on a roller-coaster. There WILL be ups and there WILL be downs. Yesterday we had one such down. A pretty big compared to our recent progress. I'm sorry it took so long to post but we needed some time to absorb the magnitude of it all, and collect our thoughts.
Yesterday, if you had asked Tyler's docs if they thought he had an IntraVentricular Hemorrage (IVH a type of bleeding in his brain) you would have heard a firm "No". His activity level and responsiveness tend to indicate otherwise, and he is making good progress on his breathing.
His activity and responsiveness are still great and his ventilator settings are even lower than yesterday. However today we saw an ultrasound that clearly indicated that all is not right in Denmark. There are 4 levels of IVH 1-4, 1 and 2 being considered minor and 3 and 4 getting progressively worse. 4 is also called a Periventricular Hemorragic Infarction, That means blood is getting into the brain tissue not just filling the ventricals.
This is scary stuff, I will take a second to caution that cases worse than Tyler have grown up "Normal" and cases better than Tyler have ended up with severe disability. By itself the diagnosis means very little. It can't tell us what problems he is likely to have, or how normal his life would be. Meeting with one of Tyler's doctors today he showed us the ultrasounds and explained Tyler has a small grade 4 on one side and a Grade 3 on the other. He also gave us a measured dose of optimism when he said that based on the fight he sees in Tyler he would suggest that we give Tyler a fighting chance. As one of his nurses said the other day "These kids haven't read the books or research papers, they don't know how they are supposed to react. Anything can happen".
This news pretty much put me over the edge. I let loose 5 weeks of pent up emotion right there in the ICN. It had been building for a long time. I sat there bawling as Tyler held my finger and looked at me as if to say "What the hell is your problem?". Again we don't really know anything firm other than Tyler now has some elevated risks for brain related disabilities. There is nothing on or off the table that wasn't there before just the risks have changed. His still under-developed brain could possibly re-route around any damage and work just fine. There are still many concerns to consider, this ultrasound is only one point in time, this could have happened anytime between birth and moments before the scan. It could also be ongoing. They will scan again on Friday to see if his condition improves or worsens.
When you get right down to it, not only are we on a roller-coaster but at the moment we are also in the dark. Space Mountain?
I never did like roller-coasters....
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