Another trip to the PICU

Lively still has not been able to eat, and every week or so, he pulls his NJ tube out of his nose. Because of this, we recently saw a surgeon who recommended a GJ tube, which goes through his abdominal wall into his stomach, and also snakes down into his intestine. It looks like this:

This procedure was scheduled for this Friday, July 2. On Sunday night (June 27), Lively pulled his NJ tube out (again), and it's a very long, stressful process to have it replaced. At one point when Lively was hospitalized in April/May, we had thought that Lively would go home with an NG tube, which was something either Pete or I could replace if we needed to. The nurses had taught Pete and me how to place an NG, and it's something I've done in adults many times. Pete and I talked about it on the phone (he was at a conference in Colorado), and decided that I would put in the NG tube at home. For the long term, Lively needs his feeds put into his intestine, but we hoped to avoid another trip (or 2, or 3) to the hospital to have the NJ placed before his scheduled surgery, 5 days away.

I put the tube in on Monday morning (June 28). Lively was very fussy, but this is not unusual. He cried longer than usual after I pushed the tube in. Initially, I worried that I had the tube in the wrong place, but I listened with my stethoscope over his stomach while I pushed some air through the tube, and it sounded like it was supposed to. I checked this several times. Lively became pretty upset, and even threw up once, but I was able to comfort him, and finally he fell asleep. When he woke up, he smiled at me. He coughed a little, which was new, and when I listened to his lungs, they sounded terrible. He coughed again, I listened again, and they sounded better. Pete and I debated on the phone whether or not I should take him in to the Emergency Department. He looked OK, so I hesitated, but finally, I decided that I was going to worry until someone checked him out, so we went to the hospital. This is Lively in the ED:

He was calm, able to rest and nap. A pediatrician listened to Lively, and thought his lungs sounded OK. I had the tube feeds (breast milk) running through his feeding tube, and he seemed to be tolerating that well with no further vomiting. The doctor ordered an x-ray, and everyone felt that we'd probably be able to go home afterward. I took this picture of Lively getting his x-ray, thinking I would send it to Pete later, maybe when we got home, and we would talk about what a sweet, calm baby Lively is, even when he's velcroed in an uncomfortable position for a test.

 Then I saw his x-ray.

When you look at this, his right side is on the left side of the picture, so the tube is on the right side of his body. His stomach is on the left. So the tube is going down his trachea instead of his esophagus, down his right main stem bronchus, and then punctures through his lung. The fluffy white stuff on his right side is milk.

We were quickly taken back to the ED, and almost as soon as we got there, Lively started to have respiratory distress. The surgeons came down and took him quickly to surgery. The surgeon was able to put a small camera in his chest and suck out all the milk and irrigate the area. Then he put in a chest tube to remove the air and fluid around the lung to help it re-expand. This is a picture of Lively's post-operative x-ray:

Lively's lung didn't inflate right away. Here you can see the tube going from outside his body into his chest cavity. His lung is collapsed -- there is a dense white area from the middle-right side of his chest (shown in the left side of this picture). This is his lung, with no air in it. The outer part of his chest, which looks blacker has no lung in it. It's filled with gas, but this is all outside his lung. The surgeon repositioned Lively's chest tube, and finally his lung inflated. Then it looked like this:

At this point, his lung has reinflated, and he was doing fine. The plan was to watch him overnight and to try to take him off the ventilator in a day or two. 

This is Lively after we got settled into our room in the Pediatric Intensive Care Unit:

Lively did well overnight. On Tuesday (June 29) he was stable all day. Pete flew back from Colorado and got to the hospital in the early afternoon. All of Lively's vital signs were fine. The doctors planned to extubate him on Wednesday. Pete and I were skeptical. During our last visit to the PICU, Lively seemed ready to extubate after just one day on the ventilator, but it was instantly clear that he was not ready as soon as the breathing tube was removed. 

On Wednesday morning (June 30) the docs took the breathing tube out. Again, it was immediately apparent that Lively was not doing well. He was stridorous, breathing around 70 times a minute, and using all his accessory muscles to draw in air. The docs tried to replace the breathing tube, but his upper airway was so swollen, they couldn't get it back in right away. They used an ambu bag to push helium and oxygen into his lungs, and after the scariest 20 or 30 minutes of my life, they were able to intubate him again. In the process, his right lung collapsed again, and on Thursday morning (July 1) when it had not inflated on its own, the docs had to place a second chest tube.

Throughout the day Thursday, Lively lost all of his IVs. Anyone who tries usually has trouble drawing blood or starting an IV on him. The docs had to put in a central line in his right internal jugular vein. Because of this indwelling catheter, as well as his sedation, his Lovenox (blood-thinning medication) was restarted to prevent him from developing blood clots in his legs or around his central line. Also on Thursday, Lively had another MRI of his brain. 

On Friday (July 2), Lively started to wake up. The surgeons felt that he wasn't quite ready for extubation, but they weaned some of his sedation medications so that he would wake up a little and try to breathe on his own. He opened his eyes and looked at Pete and me, tried to cough, tried to cry, but couldn't because of the tube in his throat. It was absolutely heartbreaking. The good news on Friday: Lively's MRI looked great. The area of his stroke was still apparent, as expected, but there was no sign of any further stroke activity, and his brain otherwise looked normal. This is especially good news, because it makes the possibility of genetic disorders that are sometimes related to recurrent strokes and seizures quite unlikely. In fact, the neurologists feel like Lively does not need any further genetic testing to look for mitochondrial disorders, which are the particular disorders about which they were concerned. The testing involved a muscle biopsy, so I am very happy to spare him this.

On Saturday morning (July 3), the docs were able to extubate Lively. This time he was ready, and so far he's doing well breathing on his own. I think his throat is hurting him, because he tries to babble or cry, and then he grimaces and stops. He still has both chest tubes, and these are clearly bothering him. But he smiled at me today, and I even saw him do a happy dance for a few seconds, which, of course, made me feel completely happy for about 3 full seconds. It's a start.

After about six hours, I got to hold him again.

There have been so many things that have been excruciating about this week's experience. Being back in the hospital, back in the PICU, back on a ventilator, having emergency surgery, chest tubes, central lines . . . . and then knowing that all of this is happening because I put a tube through his lung instead of into his stomach. I've been a doctor for 6 years (which is admittedly not that long) and I've made mistakes in that time, but never one that has hurt anyone as severely as I hurt my own child.  I have said that I will be OK when he wakes up, when he's off the ventilator and breathing on his own, when I can hold him. And today those things happened, which is good. Better than good. Miraculous, wonderful, amazingly good. But when I leave the hospital late at night to go home and try to sleep, all I can think of is the sound of Lively's cry after I put the tube in him.

I understand that these things happen. I know now that when a child has swallowing difficulties, these things happen more easily. One of the attending doctors in the PICU, who has been in practice for many years, told me that he once did the exact same thing to his own child. (Pete says that when I heard this, he could see me take a couple steps back from the ledge.) If another doctor or nurse, or even Pete had been the one to misplace the tube, I know that I would believe that this is a known complication of the procedure. I would not blame that person, or feel that the person was an incompetent provider (or parent). I know that I was trying to do what was best for Lively, to help him, not to hurt him. But for now, I'm absolutely haunted by what I did.