Our life is beginning to feel like the movie Ground Hog’s Day. We are unsure what day of the week it is and sometimes even what time it is. Each morning we get up at 5:30, I pump, take a shower, get dressed, rush to make and eat breakfast, and then meet Jeff in the parking lot by 6:45 so we can get to the hospital before the nurses shift change. We receive the report from the night nurse and then meet with the day nurse. If she is a nurse that we have not met before, we tell her everything we think she should know about our precious son. He is a ladies man and will steal their hearts within the first hour. He has a horrific temper and will give her quite the show when it’s time for a diaper change or assessment. He holds his breath when he gets mad and will set off a lot of machines and makes everyone nervous. He is small but mighty and is the strongest little man we know! He loves to have his head rubbed at the top of his nose and lightly patted on his back. He is ticklish if you touch his toes too lightly and will fall asleep if you rub them just right. He loves stories at night and loves his giraffe all day long. He melts his mom and dad’s hearts and they sometimes get emotional or forceful with the nurses but it’s only because they love him and want the best for him. We go through our day watching monitors, getting updates from nurses and doctors, and staring at our greatest creation. We break for lunch and usually finish our meal before we even taste it. Then we head back up to Owen’s room and repeat. We stay for the next shift change at 7pm and if the nurse is new we make sure she knows all about Owen. Then we read to him, kiss his forehead, pray with him, and leave for the night. We pull back into the Ronald McDonald House around 10 and inhale dinner. Then it’s up to bed and we are usually asleep before our heads hit the pillows. The next day we wake up and REPEAT!
Owen had another long day today. He started the morning with some issues breathing. The respiratory therapist was worried about his lungs and put him back on full ventilator support. Due to his fluid loss there was a gap around the ventilator tube. The support that they had been giving him was not reaching his lungs. After the X-ray they determined that Owen’s right lung had collapsed. They decided to give him another day of full rest. His heart function has greatly improved from the beta blockers. He received two chest X-rays, one echocardiogram, one kidney ultrasound and one blood transfusion. For a day of rest he sure had done a lot! As with all steps of Owen’s recovery we are waiting to see when he is ready to push forward again. Until he tells us to, we are resting with him and enjoying every moment we have getting to know him. He is in the drivers seat and as the doctors say sometimes they are just there to help steer him in the right direction. He has his foot on the gas. We have so much faith in our son and the incredible medical team that is caring for him.