All these acute changes were initially attributed to an intestinal infection or again possibly NEC.
Through the day she continued to struggle even while ventilated. Her CO2 levels remained high while her O2 levels were low and she stayed acidotic no matter what was tried. She also continued to be pretty uncomfortable.
She had a fever through the night and into the morning, spiking at nearly 103 with Tylenol on board. While it's improved some today she is still somewhat febrile. Today she was also uncomfortable and it's been difficult to control her pain without bottoming her blood pressure out or over loading her with fluid. The docs also tried to get an arterial line without success. (3 hours and 15+ sticks later I don't want to go into my feelings about that).
This morning her X-rays continued to be clear of any signs of NEC, blockage or pneumonia. Her lungs look pretty clear but cultures of sputum were sent just in case. She also had blood and urine cultures sent yesterday and today. So far nothing has grown but it takes up to five days for possible bacterial growth to present itself.
She had an echocardiogram this morning too. The results aren't good. She looks to have pericarditis or an infection in her heart-one of her tricuspid valve leaflets. The damage is severe. She'll need surgical repair or replacement of the valve and soon. We don't know if the surgeon can repair it on top of the other surgical repairs she needs. This might mean an additional open heart surgery in her near future. However the risk of taking her back with an active infection are very high. However she is only declining at this point. We seem to really be in a tough place. We don't know what will happen over the next week. One thing is clear, she'll need to be on very powerful antibiotics for a couple months after her surgery and will need to remain hospitalized for the duration. So our time here will likely stretch into the spring. We're so ready to take our Avelyn home and let her be a baby. She needs to catch a break. She's been through so very much and has endured so much pain. She's never known anything but pain, fatigue, suffering, sedation and conscious altering opiates. We're doing our best to stay positive but when the doc apologizes for "only giving bad news for a while now" it gets more difficult by the day. Please keep Avelyn in your thoughts. I'll try to do better about blogging more regularly.