Another eventful week...

Hi Folks. Sorry for another week without updates. I will be getting to it more often from now on. At the moment Charlie is actually doing pretty well. A lot has happened since the last post, but Charlie's situation right now is good.

I believe it was Saturday or Sunday when the doctors decided it was time to go back to ventilating both of Charlie's lungs. So, they pulled the tube back and put Charlie back on the Jet ventilator. The progress was definitely slow. To Shannon and I it seemed like maybe Charlie wasn't tolerating it it very well, but that was to be expected. Because they wanted to re-inflate the left lung as slowly as possible, this meant that the lower pressure allowed the right lung to deflate somewhat, so the immediate result was less working, inflated lung for Charlie. As both lungs slowly inflated, Charlie's O2 needs and blood gas numbers looked better and better.

Of course though, that's not the whole story. During morning cares on Sunday, Charlie had a dry diaper, which is especially unusual for Charlie. One skill we thought that Charlie had down pat was peeing. Every time the doctors have had to prescribe a new medicine for Charlie, we would get the same warning that whatever drug it happened to be was very hard on the kidneys. Without fail, though, Charlie had peed through everything, until now. Also concerning was that Charlie was very lethargic. He had been off the paralytic again for a while, but he was just completely listless. Again, this was definitely out of the ordinary for Charlie who has been wiggling around through high levels of morphine, versed and even the paralytic medication. All his numbers looked alright and his blood gasses were better than they had been, so the doctors weren't immediately worried.

Later in the day at his 3pm cares Charlie had still not peed and continued to be almost totally comatose. Shannon and I were pretty much freaking out at this point. It seemed intolerable that Charlie's lungs were finally starting to make some visible progress, but now he was mysteriously having kidney failure and zero energy.

To make a long story short, early the next morning, Charlie's platelet count dipped dramatically, which is a definite sign of infection or a major bleed. A head ultrasound and echo cardiogram showed that there was still no bleeding in Charlie's brain and that his PDA was still tiny and his heart was working fine. The doctors began hitting him with different antibiotics and the infectious disease specialist was called back in to oversee his dosing. He was also taken off his morphine drip and restarted on dopamine to increase his blood pressure and circulation.

Still no pee at 9am cares on Monday and Dr. Patel made a point to explain to me that Charlie's situation was again critical and without proper kidney function and such low platelets, Charlie was at risk for a major bleed or other immediate complications. The frustrating part was, again, that beside this new development, Charlie's lungs were doing better than ever. At the end of last week, Dr. Martin had said that Charlie's right lung looked "great" and both lungs were responding as well as he had hoped.

Finally at 3pm cares on Monday, Charlie decided to go ahead and turn it around once again. He finally had some urine output and was moving a little again. Over the last few days he has continued to improve and after a couple transfusions and a bunch of extra platelets, his platelet count and other numbers are returning to normal and he's back to being as feisty as ever. They figured out specifically which type of bacteria is causing the infection and he's now only on one antibiotic that specifically targets it. Turns out he was in septic shock from the infection and that was why his kidneys had shut down. This morning all the nurses were stopping by to see him flailing around again and they all seemed kind of stunned that he was still with us.

So, apparently Charlie is pretty tough and he just feels the need to prove it to us by continuing to scare us to death and then pulling through. We've learned to not get too comfortable and he still needs to get completely clear of this infection, but it's so nice to see him moving around again and feeling better. Additionally, the blood gas numbers are looking consistently better and the x-rays continue to show visible lung improvement.