This is taken from Charlie's CaringBridge page on July 16, 2014 at 11:30 A.M.
Charlie had a rough day yesterday. I guess I'll start at the beginning. We were scheduled to leave ICU at 2:00 on Monday. We had actually been discharged but were waiting on everyone to get on the same page in order to move him. There were a lot of things going on (more tests, changing linens, moving machines in and out, etc.) and one of the nurses had switched out earlier than normal but didn't realize he hadn't been fed. I asked about when he was going to be fed and she looked through his chart and realized it was time or past time. The problem was he wasn't waking up or acting interested in a bottle. John and I both tried feeding him but we were having no luck. While I was holding Charlie he started breathing really fast. John asked the nurse to come in and check him. She listened to him and mentioned that his left lung didn't sound very good and he seemed to be "pulling." They paged the attending doctor and had her listen as well. She didn't look alarmed but just mentioned keeping him one more night in the ICU to make sure he didn't have any respiratory problems before moving him to neurology.
While we were all hopeful that it was a minor set back things did not get better, they slowly got worse through the night as well as through the course of the next day. He went to the high flow oxygen and then around 6 a.m. they reintubated him. They suspected he had another infection and began drawing blood to find out exactly what antibiotics they should begin for him. Everything moved pretty quickly after they reintubated. He continued to get sicker so with the information they already had about his brain and the new progression they decided on antibiotics, an X-ray, a head and belly CT scan, among other level checks. They thought something looked off in his belly on the picture and also when they felt it. They weren't positive but wanted to rule it out as part of the problem. The surgery team also came to check on him and weigh in. They agreed it was worth doing the CT scan even though that meant exposure to more radiation because something didn't feel right when they examined him. I could share all the tests and numbers but it probably wouldn't mean much. The overall conclusion after radiology read the scans and surgery weighed in with our ICU doctors was that there was in fact another problem. His liver is enlarged and looks abnormal. They explained that it was speckled and not working properly as we saw his lactate levels rise. The neurologist came in and explained that they think this is part of the underlying metabolic disorder that Charlie was born with.
For the very first time since we arrived Charlie's doctor, Dr. Poynter, said she was worried about Charlie. She explained that some of the things they were seeing were not caused by the infection but were making themselves evident because of this new infection and Charlie's inability to get his body to work to fight the infection. Charlie's liver was not normal and his brain CT was still very concerning.
I read him another book last night called "Cuddle." I wanted to hold him and just love on him so badly but I couldn't. I wanted him to open his eyes and look at me or look at the pictures in the book but he couldn't. Instead we prayed together. We prayed for strength. That was the only prayer that came to our minds last night. We are weary and we need strength only God can provide.
1. God would give us all the strength we need to persevere through this journey with Charlie.
2. God would comfort Charlie and help the doctors, nurses, respiratory therapists, surgeons, PTs, OTs, neurologists, and other teams of doctors make sure Charlie is not in pain.