We arrived this am on the unit to see that they were preparing for extubation. She did well through the night on the anesthetic medication and was sleeping well. When the doctors rounded, they stated that she had developed a pleural effusion (fluid pocket on the lungs) in her right upper lobe. They decided to place a pigtail tube in to drain the fluid off. Also, they did another echo this am which showed that her right ventricle pressure was no worse, but no better either. Her blood level was a little low, so they wanted to give her blood. So, the plan was to extubate at 11am, get another chest xray to see if the fluid improves are the pigtail placement. We stepped out to breakfast and when we came back they stated that she blew both of her iv's, so they were trying to obtain a new one for the blood. No luck. They also finished putting the pigtail in and was able to obtain almost 100 cc of fluid off her lung. This was good. She sounded better. They had to stop her Propinol medicine to keep her sedated because her iv went bad. So, they had to run her blood through her central line for now. She started to wake up, so they preceded with extubation. This is when the day went to pot.
Almost immediately upon extubation, she began to struggle. Her heart rate shot to 190, her blood pressures went really high, her oxygen saturation dropped to the 50's. Her body quickly became dusky, then blue. They began her on high flow oxygen with the Nitric at 10L. They obtained a blood gas in the meantime. After about 15 minutes of pushing medicines and trying to help her improve, she became more pink and her levels were starting to come down. The attending came in to see how she was progressing. Since her sat's were still running in the 70's and her blood pressure was up, he wanted to raise her Nitric Oxide from 5 to 20 to see if she would respond by having the vessels in her lungs relaxed. The blood gases came back and her blood in the oxygen level was 34, which is really low. He said that she is blue, her lips are purple, he is concerned. He chose at this point to re-intubate her since she was not stable and needed assistance. He called Dr. Eghtesady to discuss her situation and decide the plan. He obtained an echo during that time, which showed that her right ventricle is big and unhappy. He said that she is shunting her blood (non oxygenated) over her hole in the top of heart and out to her lungs, which is why her saturation levels are low. He said that her right ventricle is not pumping correctly and blood is not going down into it. So, after speaking with Dr. E he said that they are going to speak with Dr. Beekman (her cardiologist) and decided the next step-going to the cath lab today or tomorrow. They are not sure what is the cause of the pressures going up-they are checking to see if it is possible as vessel might have narrowed and can be stretched. We will see. We are waiting now to see when this will be. They have placed her back on all of her drips and as needed dose of narcotics and sedatives-Morphine, Ativan, Versed, and Fentnyl. They have put her back on the Epinephrine. They are trying to keep her well sedated, which is slightly working. They placed her on a paralytic medicine as well to keep her still. Her pressures are still going up some and her oxygen will drop, but then everything evens out. So, hopefully she will relax for the next little bit. They are coming at 5pm to place a PICC line in so that they can have a continuous line in her for her medicines. Since she has trouble keeping her iv's in. Her most recent chest xray came back after extubation which showed that her upper lobes were hazy and her lower showed no blood getting to them. The one prior to extubation looked great and clear.
Right now Justin and I are very overwhelmed. It is very scary to see her in this position. We are just trying to be here for each other and hope that she gets better. We hope to hear good news once the cath is done, but we will see. Please Please keep thinking and praying for our baby girl. We know that she is a fighter, but sometimes God has other plans. We will stay positive and hope for the best. Thanks to everyone for the love, support and prayers. We will let everyone know when her cath will be and keep everyone posted on her status.
Love, Jenny Justin and Jenna