I decided a while ago that every so often I’m allowed to feel sad, and today I’m letting myself have a sad day. On days like today tears are okay in line at Starbucks and it doesn’t mean I’m not proud of my family or myself or that I don’t appreciate how lucky I am. I’m placing the blame of my weakened mood on Ellie’s drainage tubes. I hate those drainage tubes, there I said it, I hate them. They hurt my poor sweet girl who doesn’t deserve any more pain, they are a constant reminder that something is still wrong, and they don’t fit under her PJs so I have to buy all new PJs (okay that part isn’t so bad). We had our post op appointment today which consisted of a chest x-ray, a fluid function echo, and an appointment with our doctor. If anyone has expereinced a chest xray apppointment with an infant they will know how horrible an experience it is. To get adequate pictures the babies have to be placed in a contraption that holds their bodies upright, then they strap them into this device tight enough to keep them as still as possible. It was horrible when it was done prior to Ellie’s surgery and now as her body is still healing, it was even worse. A painful experience to watch your little girl screaming when there is nothing you can do to help her. The echo was very fast as this wasn’t a full echo, its only intention is to make sure there is no fluid surrounding her heart. Ellie’s doctor was pleased with the results of the echo and chest xray, and minimized her lasix medication from twice a day to only once. As Ellie’s drainage has not gone down to a safe level we had a realistic conversation about our future options. If it has not gone down by Saturday Ellie will be put on steroids to attempt to lessen the inflamation of the thorasic duct that was injured during surgery. We are then given a week on steroids. If progress is not made within that week we are back in the hospital and Ellie is on IV nutrition for a week. No food by mouth, a minimum 7 days of inpatient care. I had been told these details when we were first notified of Ellie’s Chylothorax but at the time was more focussed on recovering from heart surgery, but now these deadlines are sinking in. I am still very hopeful that the drainage will go down within the next few days, but the thought of returning to inpatient care a week from Saturday feels like a painful step back. While sitting in the waiting room, letting these steps sink in as Ellie slept in her stroller I saw a boy with Down Syndrome sitting with his family. He looked to be about 5 years old and was playing a game with his father. As the nurse walked into the room and slowly looked around, she read his name for his appointment. The boy’s face lit up with excitement I feel better suited for a snow day or a trip to an amusement park. He leapt from his chair and ran to the nurse, his face beaming with joy. I couldn’t help but smile at this sweet boy who was clearly the only one in the waiting room actually excited for his doctor’s appointment. It had me thinking that maybe Ellie is getting all of her pain out of the way early, so she can forever be our optimist, reminding us to find joy in the little things like having a nurse call your name in a room full of people to signfy its your turn.
MyaAndEllie on Sisters MyaAndEllie on Happy Birthday Eloise Megan on Happy Birthday Eloise Kerry on Sisters MyaAndEllie on Sisters