Trauma

From Monday night to Tuesday afternoon, Jane had 5 life-threatening emergency events, 2 of which were “codes” announced over hospital intercoms. These codes were followed seconds after by trauma specialists and support staff flooding Jane’s room to revive her. Yesterday afternoon’s code was as bad as it gets, and surviving. 

With tons of indicators, tests, x-rays, symptoms, and episodes, doctors strongly believe that Jane has an infection, which is often fatal in the ICU. 

What happens now is be as gentle as possible to Jane and hope she powers thru this infection faster than it breaks her down.

She had an “episode” every 4-5 hours. It’s been 17 hours since her last one, and there’s very little that can be done if she has another one, since she’s maxed out on the medications used to help her get thru the episodes.

“If people had 1% of the will that Jane has to live, the world would be a better place.” -The world-class doctor that told us 12 hours ago that Jane wouldn’t make it thru the night. 

Update

For starters we couldnt have asked for a better doctor here at CHOC. Dr. Cleary is on top of his game. He is no BS kind of guy—precise, focused, informative, careful, exact…definitely a Godsend at this point of time. He is so precise that he was making sure the nurses are drawing their blood gases consistently. Drawing blood gases is something nurses do second nature, but he is so exact that he wants to make sure all draws are exact so that they dont treat something based on the wrong lab numbers.

After rounds this morning it was decided that we will continue to make forward steps as Jane allows. Yesterday Jane was put on NO (nitric oxide), a gas that decreases the resistance in the lungs. She was at 80ppm (parts per million)—a dose that the nurse and respiratory therapist have NEVER seen before all their time working here. The nurse said that when she gave report to the night nurse on Jane and told her she was on NO of 80 the nurse questioned her and said, Did I hear you correctly, 80??? Since then we have been able to come down to 20ppm which is the normal therapeutic dose used. So far Jane is tolerating the move. Her chest xray this morning shows a very small improvement in her lungs from yesterdays xray. Overall, there arent very big plans for today. Jane is so critical that any big move can cause her to fall in either direction so the team may make a wean on her life support and then give her several hours to see if she tolerates it. Slow……………..and…………….. steady…………..

The overall consensus this morning is that they dont know what the exact issue is with Jane. They arent even 100% sure that it is an infection causing her to have major lung issues now. What they DO know is that Jane has a very critical and rare heart condition. All of her other complications are made worse because she has such a sensitive heart. If a healthy baby had an infection in her lungs they would start antibiotics and most likely see improvements in the next 24-48 hours. Not the case with Jane…it takes much longer. If a healthy baby has liver disease they would treat it and see improvement quickly….not the case with Jane. In addition to all of her complications she has this underlying heart condition that adds to the mystery and severity.

We have not lost hope….she is the STRONGEST baby I know.