Words cannot express how wonderful it feels to be home. We knew that pleural effusions could keep us in the hospital, but since Bobby had done so well for the 1st 2 surgeries, we were hoping that it would be the case for the 3rd surgery. The first obstacle that we ran into was the 1st chest tube (blake drain). Apparently this drain does not always work well for some kids, and to complicate matters, they sent us to the step-down unit where not all of the nurses had experience/training to deal with the blake drain properly. It seems that the surgeons expected the nurses to handle the care of the tube, and that just wasn't the case. Bobby built up quite a bit of fluid in his right lung, which made him miserable. He just wanted to lay in bed and sleep. The only way we could get him up was to pull him around in the wagon. Then Bobby started getting fevers, and it appeared that his chest tube was infected. This meant antibiotics and that the frustrations with the chest tube were continuing. It appeared that the infection was improving, until he spiked another fever. Then they swabbed the site and put us on precautions since they were testing for MRSA. It was not very fun to keep Bobby quarantined in a room, but it did get us into a private room which was great since we were there for so long! Although he tested negative for anything infectious, the fluid actually started seeping out from around the chest tube site, which meant that the chest tube had to come out. This was after about 1.5 weeks of the surgeons and cardiologists going back and forth over the darn thing. Since the area was so nasty, they could not use the stitch to close the hole from the chest tube, so they had to keep it covered as to prevent air from coming into his chest and causing more problems. They decided to see if Bobby could handle the fluid without a chest tube, but that was not the case. Finally they put a new chest tube in and that really helped Bobby along. But he developed another fever because that old chest tube site was STILL infected. He had to get stronger antibiotics and we thought we were turning the corner. They also decided that he needed some IV diuretics and 2 units of blood to help him along. Fortunately, the IV lasted through the blood, but after that he couldn't keep one. His drainage from the chest tube held steady around 160 for days. Finally, last Friday, they decided to take a leap of faith. They switched to all oral medication and clamped his chest tube to see if he could manage the fluid on his own. Perhaps God sensed that we were at the end of our rope...we couldn't handle much more. We were so thankful that Bobby was able to show them he was ready to go home. They pulled the chest tube on Sunday morning, and despite a couple of minor concerns (red eyes from sleeping with them open, chest incision infection), we were able to go home on Tuesday.
Many of you know from my updates that this was not an easy road by any means. I went through a stretch of crying almost daily, hardly being able to keep my composure in front of the doctors. Seeing your child suffer day after day is HARD. To make the situation even more trying, you are surrounded by kids that have been there for months, and even kids who are in and out quicker than you. When I was at my lowest point, a friend sent me a wonderful verse about patience. It was something that I really needed to hear.
Romans 5: 3-5
We can rejoice, to when we run into problems and trials, for we know that they are good for us- they help us learn to be patient. And patience develops strength of character in us and helps us trust God more each time we use it until finally our hope and faith are strong and steady. Then when that happens we are able to hold our heads high no matter what happens and know that all is well, for we know how dearly God loves us, and we feel this warm love everywhere within us because God has given us the Holy Spirt to fill our hearts with his love.
Each day I had to remind myself that God had us at CHOP for a reason. If it wasn't time for us to leave yet, we hadn't fulfilled His purpose yet. We were able to witness 2 children, who had been waiting for months, receive a second chance at life. What an amazing experience, yet filled with so many challenges for their families. And we only saw a glimpse of what their lives had been like while they were waiting. There were families with infants and newborns who had been in the hospital for weeks, often on the ventilator, as their bodies recovered from surgery. But then there were the kids who were up and moving days after surgery and were able to go home without any hurdles! I have so much more to share about this, but I want to leave you with some cute Bobbyisms from the hospital.
*Bobby loved the wagon. It had a soothing effect on him.
*His favorite place to play was in the kitchen. He would serve tea and cook pizza in the oven.
*Bobby's favorite place to hang out was by the elevators. He would push the buttons and say hi to all of the people on the elevator when they were stopped on our floor.
*Each day we had to take several laps around the CICU. Bobby usually had something with him such as a shopping cart or little bike. He was always worried about the babies crying and we had to stand and watch until they stopped.
*He was obsessed with doors, especially the "magical doors" that only opened with the magical key. Everytime we walked by the doors, Bobby had to tell me if the doors were opened or closed, and watch when they opened or closed.
*One of the doctors gave him a stethescope to listen with. Everytime I asked him if he had a stethescope, he said, "No Mommy, that is not a stethescope, it is a listen." He would also walk around with it around his neck calling himself Dr. Bobby.
*The last technique that he tried to get people to stop messing with him was to tell them, "No thank you." He would say it over and over again, along with "It is not fair" and "I don't want any boo-boos."
I am sure that I can think of some more, but I hope that this does for now. Thank you again so much for your thoughts, prayers, and words of comfort to get us through this time. God has blessed us with many wonderful people to support us.
Tomorrow we are headed to the University of Virginia to see Bobby's cardiologist. I will keep you posted on the visit.