In the immediate days after Tyler’s condition was at its worst, he surged a little – just enough to pull him back from over the edge. That was the miracle we needed to save his life; even the doctor said there was no explanation for it. In the last week and a half, we’ve been anxiously watching hour by hour for any progress in his vent settings or other indications of improvement. Today, we requested a meeting with his doctors to help us understand why he fluctuates so much from day to day, from shift to shift, even from hour to hour, only to end up being “stuck” where he is. We’d been feeling like we are in a hamster’s exercise wheel, and I guess we just needed some help understanding why Tyler seems to have plateaued.
From what we learned today, I think we can be much more specific in our prayer requests. Basically, we are in a waiting game right now. The doctors said that kids with Idiopathic Pneumonia Syndrome can expect to remain intubated for weeks to (gulp) months. The length completely depends on how fast Tyler’s lungs heal. Right now, the major concern is that the subcutaneous air will put too much pressure on his heart and lungs (pneumothorax). The oscillator is his ONLY option until he is no longer at risk of pneumothorax and his lungs improve enough to require lower pressures. All the playing around with settings we were getting so alternately excited and disappointed about aren’t really big indicators of health status. Basically they told us either Tyler will get better on the oscillator, or he won’t. What direction Tyler is taking is unknown at this point, but the doctors said it should be clear in 4-6 weeks.
Here’s a list for all our prayer warriors out there to focus on:
- Please pray that Tyler’s lungs will heal much more quickly than expected
- Please pray that the subcutaneous trapped air will be quickly reabsorbed by his body
- Please pray that Tyler will remain safe from all the dangers both the PICU and his own body pose, such as infections or other ventilator complications
- Please pray that the longer period on the ventilator will NOT cause permanent lung damage or the other typical complications of complete immobility
The longer term concerns are just that: longer term. Before we can get there, these other things need to happen first. The doctors spoke of months of inpatient rehabilitation for Tyler when this phase is over, and months (or years) longer before we’ll know if his lungs will always need the support of oxygen. But we have to pace ourselves and focus on what’s important now. And these timetables are that of medicine. I know the Lord isn’t limited by them!
For those bold enough, please pray that both Tyler’s short and long term problems will be resolved in a fashion and speed that can only be explained by the Lord’s healing!