So two big events occurred yesterday that have helped us get Logan on the right path. When we got here yesterday we had another nurse that was completely unwilling to listen to us. She was argumentative and would not listen to a word that I was saying and so I decided at that moment that I was calling patient advocacy. I expressed all my concerns to that person about the complete unwillingness of the nurses to listen to us, that they kept blocking us from talking with doctors, they took offense to us asking for second opinions. This woman was wonderful and said that those types of behaviors were not acceptable. She talked with the charge nurse and gave us resources to go to if we have any other trouble. We also got new nurses to deal with, and the doctors were made much more available to us. Because of the new availability of the doctors, we were able to brainstorm ideas about Logan’s condition with the nurses, the doctors, and us. We were unable to really come up with the missing piece so I asked the attending if he would be willing to speak with Dr. Patel (our cardiologist back home) to see if he could give any information. Dr. Patel has known this baby since 20 wks. in utero and has done probably 25 ultrasounds on his heart he is very familiar with his anatomy. Sure enough Dr. Patel suggested that blood was not flowing thru the pulmonary arteries well because of pressure changes that were occurring in the physiology of the heart post surgery. The hemodynamic (blood flow) are completely different than before surgery and that his heart needs to adjust and this will take time and that everyone has to be patient. He suggested using a vasodialator (medicine that dilates blood vessels) to see if reducing that resistance would improve his blood flow. Sure enough, with 30-45 seconds of him inhaling this medicine his O2 went up to the mid to high seventies. It was like magic. This was enough evidence to convince the doctors that this was the problem and everyone settled down. 24 Hours later, Logan is doing great, he started smiling and is much more comfortable. Now we just have to wait to see the pressure changes settle and if they do good. If they don’t then we need to do some more investigating. But for right now, it appears that we are on the right path.
Absolute craziness has happened here. After I thought we had figured out that Logan had Pulmonary Vascular Resistance and just needed to remain calm, because when he gets mad the pulmonary artery constricts and blocks blood flow back to his body. I thought we were totally on the right path. Until we got a new nurse last night that once again would not listen to a word we would say, completely neglected his care, was argumentative, and extremely defensive, and she by herself set off a chain of events that lead us to have one of the worst days yet. At about 9pm I noticed Logan was fussy and that his face looked a little swollen. I also noticed that his eyes were blood-shot. I told the nurse this and she said no, that was not her assessment at all, she did not agree. Logan continued to be fussy for the next hour and Scott and I both told this nurse that he was having discomfort and needed medicine. She said that he wasn’t that he needed fluids. So I let her try that, it didn’t work. I let her try 2 or 3 other solutions and then I started getting mad and explained to her that this is my baby and I know when he is in pain. I asked to speak with a doctor and I was told no, that only a fellow was available who also didn’t make a correct assessment. Finally after hours (literally) hours of arguing I worn them down and they gave him pain medicine. He immediately calmed down and his O2 went back up. The nurse and fellow FINALLY agreed that I was right and he did need pain medication. By the time he was comfortable it was 3AM. I felt because he was comfortable and Scott was going to be here really early in the morning that I could go and sleep back at the hotel for a couple of hours. BIG MISTAKE. When I got here this morning. His face was double the size, his eyes were bloodshot, and he was crying really hard. I have never seen such a horrific site in my life. They had allowed him to get upset for so long that blood flow backed up into his face. The swelling was so severe that at this point they were worried that maybe there was an obstruction in the Glenn pathway (in his superior vena cava) causing blood to get caught in his head. This was truly one of the worst mornings of my life. I am happy to announce that there was no obstruction it is most likely only pulmonary resistance (thanks again Dr. Patel for figuring this out) and the conclusion became we have to keep him comfortable until his pulmonary arteries adjust to the pressure changes. They have upped his pain medicine so he stays comfortable and are FINALLY listening to us about what is upsetting him. This truly was a day from hell, and I am so thankful it is over.
AND I WILL NOT PUT UP WITH HIM HAVING THAT MUCH DISCOMFORT AGAIN.