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I know it's been a few days since I actually provided some medical information, which may be good or bad, depending on your patience for my jargon. Andrew's had a few good days in a row, medically, and we're proud of him for handling everything so well. It must be disorienting and frustrating to be put to sleep for a month, and to wake up weak and unable to move like you remembered. Fortunately, he doesn't seem to be upset or in pain....he continues to be curious and interactive (when awake), and comfortable and relaxed (when asleep).

His lung function has been surprisingly good recently. The doctors planned to wean off of the ventilation very slowly, to give his muscles a chance to recover and get stronger. Though he still doesn't have anywhere near the muscle definition he used to, he is breathing pretty well, and has been able to wean quicker than expected. He started at 30 breaths per minute, but at one point was up to 40. Now he's down to 12 breaths per minute, which is nearing minimal levels. The pressure provided by the ventilator has also dropped significantly from its initial settings. Lastly, his oxygen rate has hovered between 26 and 40....he's still not near room air (21%), but he's doing well at these levels.

Since he's doing so well, and getting test results with especially low CO2 levels (for him), they decided to start sprinting him. Sprinting means turning off the breaths given by the ventilator and letting him breathe on his own. In order to overcome the difficulty of breathing through a tube, pressure is added during his breaths....they call this "pressure support." He started sprinting yesterday, one hour at night and one during the day. So far his blood test results (taken 20 minutes after the end of the sprint) have looked great. They'll probably increase the time and/or frequency over the next week.

He's still being fed steadily through his stomach tube. They've been keeping his feeding volumes pretty low recently, but are now starting to come back up. From 6cc per hour, it was dropped to 3 per hour, but has now steadily climbed back up to 7. It's good that he can get even this small level of milk, as that will help his digestive system stay active and efficient. The rest of his nutrition consists of IV nutrients and IV lipids (fats).

There were some unexpected issues that plagued Andrew last week. His rapid heart rate seems to have subsided, perhaps due to the drop in steroids. He can still get upset and raise his pulse, but his "upset level" is around 180, which is similar to what it used to be....when he had his issues last week, his heart rate was getting up into the 220's. He has also had an on-again-off-again fever recently. That fever seems to have gone away; he hasn't needed any medication for it and hasn't shown signs of an increased temperature in the last two days.

As you saw, D got to hold him on Sunday. It had been a long time, and was definitely a great treat. It's a huge pain to move him into her lap, because of all the tubes and wires; it took three nurses to get him situated without accidentally pulling out a line. Once he was in her arms, he looked right into her eyes for a few minutes, then got comfortable and fell asleep. He was asleep for over an hour, occasionally popping his eyes open (Surprise!) and then immediately going back to sleep. It would have been nice to hold him before he went back on isolation, so there could have been more skin-to-skin contact, but if wearing a big yellow gown means we get to hold him, then a big yellow gown it is.

Andrew is still very weak, and it will take a while for him to fully recover. Each day he moves a little bit more. First it was just his eyes, then his fingers, then his hands....now he's moving his arms up and down. He's probably at about 20% of his previous strength, which prevents him from pulling at his lines (a problem we used to face) but isn't very fun to watch. The physical therapists are going to come work with him, performing stretches and exercises that will help him regain his strength.

The long term plan is unchanged since last week. They'll give him the opportunity to get stronger, slowly weaning the ventilator, then continue the sprinting with increasing durations and frequency until he seems ready to be extubated. We don't expect that to happen in the next couple of weeks. The possibility still remains that he'll need to have a portion of his left lung removed, but so far it's behaving itself. He'll also need stomach valve surgery, which can be scheduled any time.....for now the focus is on getting him off the ventilator.

I promised more pictures, and I'll post some over the next couple of days. Since he's now awake and moving, I might post some new video as well. Hope everyone has a great week!