Educate yourself.

Everyone has asked whether or not my knowledge of what's going on is a good or bad thing because I am a nurse in an ICU at this hospital. It's a double edged sword... at least for me. For Todd it's a blessing. 

We are all people. People are not perfect. We make mistakes. We under perform. We miss things. We overlook thinks. We over analyze things. No one person can be blamed or held accountable for not being perfect of for anything I'm about to say. It is simply the truth. It happens in every hospital, with every nurse, doctor, respiratory therapist etc. It happens in non-medical fields. You make decision on your best judgement, with the information you have in front of you. That decision may not always be right, but you have to make one. No one would ever get better if you waited around to make a decision. Every person has different experiences that lead them to their own decisions. I trust my child with the team here. I trust their decisions, but that doesn't mean that I blindly agree with everything they say. I think about it. Go through my own experiences. I ask other nurses and doctors that I'm friends with what their opinions are. I research. Even medications/conditions I'm very familiar with... I've researched. I've educated myself.

Shortly after extubation, Todd was not coughing. He showed no signs of even a minor cough. This is potentially a very serious problem because he isn't protecting his airway. If you can't protect your airway your lungs are not safe. You are at risk for aspirating saliva, vomit, blood etc... anything that may wind up in your mouth. This leads to further lung complications. The fix for this would be a tracheostomy. They would cut a hold and place a tube directly in through the neck/throat thus bypassing this area. He would breathe through this hole. In Todd's case, he wasn't coughing because he had something called 'laryngomalacia.' This is where the opening to your lungs is soft and not functioning properly. This was confirmed by the ENT team. They requested that we wait a week and see if it improves before we start talking about a tracheostomy. I was okay with that. I didn't like the idea of the trach, but I knew we might potentially need it. Later that day I was approached by another doctor that had a different opinion. He did not think we should wait a week. He did not think that he would improve. He attributed this problem to possible nerve/brain damage from the hypoxic hit Todd took during his cardiac arrest. This was on Tuesday, he wanted the trach placed on Friday... I requested to at least have the week that ENT wanted. He granted me that (even though they still kept Todd on the OR schedule for it). In my head, I figured the problem was due to trauma to his throat during intubation. He was traumatically intubated in the field. Then the tube was switched out at the next hospital and then we also had a failed extubation with reintubation. Todd's throat went through a lot. I requested to speak to Neurology. I wanted to know what they thought. They met with me the next day, Wednesday. They agreed with me. It was due to trauma That was enough for me. The next day... Thursday, Todd coughed. The nurse and I looked at each other. We weren't sure what to make of it. It only happened a few times that day, but it did happen. Friday... the day they wanted to put the trach in, his cough was stronger than ever. This was also the day that he smiled. This was a sign to me. He was getting his motor function back... he was getting the cough/gag reflex back. Saturday... he laughed. By the time the following Tuesday rolled around and ENT was back to assess the situation Todd had significantly improved, but we still needed to know. ENT used a scope to actually look at Todd's throat. They would be the ones to give the best idea of what was needed. They said the trach was not needed. I have never been so relieved in my entire life. Todd still does not have a trach. That was 3 weeks ago. 

We had a series of unfortunate events, but that's life. The next issue that came up was Todd's feeding tube. He hasn't had a surgically placed one yet, but has one going through his nose into his small intestine. To make a long story short, the tube was not functioning correctly, but no one wanted to consult the team that places them because it would flush with water. Todd wasn't getting his medications. They were backing up into the feeding bag and the line would explode and there lay his medications in the floor. We couldn't give him another dose for risk of overdosing... we didn't know how much  he actually received. This was not okay. We had his neuro storms under control. We had a great couple of days. They started to get worse again because he wasn't getting his medications. We finally convinced someone to call the team and the tube, in fact, was not functioning properly. They replaced it. 

According to the literature, neuro storms are fairly common in brain injuries. I've had brain injury patients, but I never experienced this with them. They are also very hard to control and treat. It is a very delicate balance of medication and it has to be individualized for each different patient. I don't know all of this because I'm a nurse... I know this because I did my research, because I'm playing Mommy right now. I looked into every possible solution. Every possible medication. I brought my concerns, questions, and suggestions to the team. They used some of them. They worked with me. Todd no longer has severe storms. 

Todd has a cardiomyopathy. He is a cardiac patient. Cardiac patient's have issues with fluid. I don't work with many cardiac patients, most of mine are other injuries associated with trauma. This is not my area of expertise by any means. I had to do research. I had to learn a few things. Knowing your child is one thing you trump the doctors/nurses on. You'v known your child. You know what they normally look like. You know when something isn't right. Something wasn't right. Todd was getting puffy. His face was swelling, his belly was swelling, his arms were swelling. He didn't look gigantic, but he didn't look like Todd. The only thing I could focus on was his fluids. I could tell he was getting too much, or at least that it wasn't staying in the right place. As a nurse you have to advocate for your patient... as a mother, you have to advocate for your child. He needed his fluids cut off, he needed diuretics. He was going into congestive heart failure. Luckily we had an amazing nurse that night that was specifically trained in a cardiac ICU. She jumped right into action the second I said something wasn't right.

Having knowledge helped me understand what was going on so much better. It helped me understand the terminology. It helped me in my research. It helped me advocate for my child. It helped Todd. Educating yourself, being involved, asking questions, researching... these are all things any parent needs to do. As a nurse, it's kind of the same. We are with this patient for 12 hours straight, we are constantly in that room. The doctors only get a snapshot when they round. It's the same thing. Yes, the nurses are in here a lot, but as a parent... I'm at the bedside 24/7. I notice the subtle changes that maybe someone else might think was him just being a chunkier kid. 

I am so grateful that I went into nursing, that I work here at Shands, that I work in the department that I do. All of those things combined helped me to be a better mother for my child during this. You don't have to be a nurse though. I hope to anyone that reads this, to anyone that ever experiences a family member in the hospital that you will participate, educate yourself, advocate. You have no idea how much you can actually help. 

(for my Dad in reference to the game today)