Monday, December 27, 2004

We had another scary call from the NICU early this morning, but now several hours later, Will is doing pretty well and seems to be recovering. The phone rang at 3:07 a.m. with a call saying that Will was having trouble and we needed to come in. Every imaginable thought raced through our minds as we hurriedly got dressed and rushed to the hospital. By 3:25 we were standing outside Will’s room being told by his nurse that he was doing OK while a dozen doctors and nurses continued to work with him.

The entire episode started shortly before 3 a.m. His oxygen began falling off quickly and they couldn’t get him to respond when they tried to bag him to bring it back up. His heart rate started falling off quickly at the same time. His nurse hit the emergency call button, and soon his room was full of people ready to help. They took out his breathing tube and continued to bag him. The culprit was a mucus plug that was blocking his trachea and was big enough that it wouldn’t come up his tube. They got it out and got him breathing well again. He needed several medicines to get his heart back to normal, and had to do CPR on him for a while during the worst of it to keep things going. By the time we arrived 30 minutes after it started, the situation seemed to be in hand. They tried a couple of different ventilators to help him deal with the post-episode effects, but found that he likes the high frequency ventilator best and put him back on what he’s been on since the beginning. He had another episode around 8 with another mucus plug, but they caught it much more quickly this time and got him a bigger breathing tube so they should be able to get any other plugs out before they cause such problems.

The plugs are just a natural formation; mucus binds together and can form a little plug. They suction his breathing tube several times a day to get rid of such problems, but sometimes the plugs can hide out in the lungs and cause problems because they grow too large to get out through the tube. It could happen again at some point or never again. It’s up to Will’s respiratory system at this point.

He’ll rest quietly today so he can recover. He’s on morphine and a muscle relaxant that will keep him from fighting against the ventilator. Much as they did during his PDA surgery, they’re letting the ventilator do most if not all of the work of breathing for him.

If there is good news to take away from this morning, it is that the fluid around his lung doesn’t seem to be reaccumulating as quickly as it had been. The last time they tapped him was more than 24 hours ago, and while there is now some reaccumulation, it hasn’t been enough to compromise his breathing yet. It’s tough to know what to make of that, though. The doctors say that under ideal conditions it’s difficult to know if the octreotide really helps to close a lymphatic duct leak or if it would have just closed on its own. This morning was far from ideal, so they certainly aren’t ready to say the octreotide is working already. Will doesn’t need any more hurdles, however, so if the fluid leak is slowing, that is fantastic news.

So, here we are 8 hours later, sitting with our son almost as if nothing had happened. His stats are pretty much where they were last night when we left him, save for the fact that his ventilator is set much higher than it had been. He gave us a real scare to be sure, but as with all other challenges he has faced, he just took it on and seemed to recover. We’re not sure where he finds the reserves to deal with all of this, but we’re glad he is able to tap into whatever it is. There are times when it feels like we are helping him to pull through, a light touch of a hand to his head seeming to calm him. This morning, it was Will pulling us through. While we sat and worried, cried and wondered at what was to come, he faced it down and just kept chugging along. It’s absolutely unbelievable how strong this kid is. He is a tough little fighter, our Will.


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