A rough week...

Well, first I want to apologize for the lack of posting over the last few days. Wednesday night was pretty traumatic and I've been waiting for some good news to report, I guess. I sometimes don't have the energy to spell this all out and I also feel awkward making a post when I only have bad news to report. Charlie has had a couple of stable days again now, so I wanted to finally fill everyone in. It's frustrating not knowing what will happen tomorrow or the next day, but that's true for everything, of course.

Dr. Weng called me when she came on duty early Wednesday night and told me that the lungs were looking really bad on the x-ray and were obviously weak as indicated by the lung collapses. His body's natural response to the pneumonia and the lung trauma is inflammation of the lungs, some of which is good and helpful, but Dr. Weng thought that it was becoming too severe and let us know she was starting him on a low dose of steroids in an attempt to stop the inflammation. She explained that the steroids do have side-effects, some of which are long-term developmental problems, but she stressed that they were giving him a very low dose which should minimize any possible side effects while still being effective.

Later that night around 10:30pm, we received a call from the NICU which consisted of one of the nurses telling me there had been an emergency with Charlie and we needed to come in immediately. She gave me no other explanation and to be honest I did not want any. Shannon and I rushed to the hospital and when we arrived there were about 5 nurses and Dr. Weng standing around Charlie's bed. We, of course, had feared the worst due to the lack of information provided in the phone call, but Charlie was stable, his numbers were normal and the only sign of anything wrong was the excess of hospital staff with scared looks on their faces and Charlie's very pale color.

After some tearful sighs of relief on our part, Dr. Weng filled us in on what had happened. There is a very scary standard procedure that they have to do with his breathing tube that Shannon and I had witnessed before many times. In order to suction his breathing tube and clear out any debris so that air can continue to pass freely to his lungs, the nurse and the respiratory technician have to disconnect the tube from the air supply. Essentially, they unplug the primary device keeping Charlie stable so that they can quickly clean the tube and then plug him back in. This usually lasts 4-6 very long seconds and results in a pretty sharp drop in his vitals, but once reconnected, everything climbs back up. However, this last time they had attempted the procedure, his vitals did not come back up and in fact continued to plummet. A lightning-fast X-ray revealed that his left lung had collapsed again and that there was a huge pocket of air that the chest tube was not relieving. This resulted in his left chest tube being pulled and a new one inserted, which finally brought Charlie's vitals back up. We had been called because they were not certain they were going to be able to get him back and even after the new chest tube, his stats had dipped again once.

After we calmed down a bit, Dr. Weng showed us Charlie's X-ray history and specific one with the large pocket of air that had caused the collapse during suction. Without any medical training I could easily see the problem. Charlie's lungs were hazy when they were supposed to be black (something that had been shown and explained to us before), but they were also progressively looking more and more like stucco or popcorn ceiling. Dr. Weng described them as sponge-like from the inflammation. This is what she had been talking about before and why he had been started on the steroids.

So, to abbreviate from there, the following afternoon (Thursday) Charlie's right lung collapsed again and they had to reinsert the right side chest tube to relieve the pressure. Since then, the last two days have been a lot of slow, steady recovery for the lungs. His ventilator settings and oxygen needs are slowly but consistently returning to pre-lung-collapse levels. Charlie is still on lots of antibiotics and continues to receive the steroids (although they are already weening the dose). They have also kept him pretty heavily sedated, which is good because with two chest tubes and everything else, he would be in a lot of pain otherwise. On top of all that, I guess the steroids also make him feel agitated and uncomfortable, so the pain relievers are Charlie's best friend right now.

Despite the sedation and pain meds, Charlie has become more alert than even before he got sick and opens his eyes a lot and moves around during cares. It's a good sign that he is feeling better, and it's great to see him look around and be so active. The flip-side is that it's really better for him to stay calm and still so that all his energy goes to healing his lungs. But, all we can do is try to comfort him with our touch and let the nurses do their best to keep his sedation level pretty high. even so, the fact that he is active in the face of all attempts to keep him calm really helps us feel like he is a tough little guy and is doing his best to fight through all this. He's got his arterial line back in too which means they don't have to poke his heal every time they need blood and they are hoping to get the PICC line back in today or tomorrow, which is good because he is going through IVs like crazy (he even was lucky enough to get one in his head a few days ago, which looks really uncomfortable).

I always like to end these posts on a high-note with some good news. I guess it's just an ingrained story-telling norm, but to be honest, I think Shannon and I are more scared right now than ever before. It seems selfish to even talk about us being anxious when Charlie is the one who has to lie in a plastic box, poked and prodded without end, but I suppose it's a natural response. But, I want to mention again that we truly do appreciate the support and love that we receive from all of you through the comments on this blog and otherwise, and we hope that in time we can repay it in some way (or at least reply to it), but for the moment this blog will have to do.