The Journey Continues...

It’s almost been 6 weeks that William has been in the hospital, and I feel like I have aged at least 6 years! I’ve made over 85 visits to the hospital, paid over $150 in parking fees, visited 4 different units in the hospital, met with dozens of specialists and followed up with a never ending list of test and lab results. I’ve also come to memorize the potholes and bumps on the road to the hospital, befriend many other patients, respect many doctors and even be on a first name-basis with the garage parking tenants. I guess I’m a pretty big deal at the hospital…

A little over a week ago William was scheduled to be discharged. I was so excited as I woke up that morning thinking I would finally bring my baby home. Away from the needles and IV’s, away from the monitor beeps, and away from the constant blood tests and cultures. As I ironed his coming home outfit that morning, I got this small suspicion that I shouldn’t get my hopes up. After all, he’s been scheduled to come home twice before and then he’d lose too much weight or have trouble breathing. But last week I thought we were through all the problems. I thought he’d finally come home. As Dan and I began to leave the house to pick up William, I received a phone call from the nurse telling me that his temperature had spiked to 105 that morning, with a heart rate of 220 and that he was not coming home after all. Again. Dan and I hopped into the car and immediately ran to the hospital.

At that time William was on the Pediatric Floor for training and preparation to be discharged from the hospital. But once his fevers started spiking that high, we found ourselves back in the Intensive Care Unit (PICU).  From there the tests started. Every day they drew more blood, pricked his already scabbed over heel and took more urine samples. Nothing showed up and his fevers continued to spike. The doctors were perplexed and the potential diseases/viruses/bacteria that were brought up with doctors kept Dan and I up at night.  They thought at one point he had Meningitis and did a spinal tap. Thank heavens that came back negative! We never knew when we went to bed whether we’d be awaken by a phone call from the nurse telling us William had another spell. There were even moments when Dan and I thought we’d never bring William home. I wish I could erase from my mind the image of little William in his hospital bed, panting and struggling to breathe when his temperature spiked too high and when his heart rate was over 200.  Those are images that will probably haunt me the rest of my life. I worried and still do how his already frail heart can withstand such pressure. Wouldn’t he go into heart failure? The doctors assure me that he will be okay, and that if needed, he could go into early surgery.

Yesterday I received a call from the pediatric cardiologist telling me that William tested positive for RSV. I cannot explain to you the rush of emotions that went through me. On one hand, I was worried for William and how his already delicate heart/lungs would be able to withstand this virus. But the other part of me was relieved and encouraged that we finally knew the source, and that it wasn’t worse than it could be.  He was tested 7 days ago for RSV, which came back negative, but it wasn’t until they tested him again yesterday that it finally came back positive. And so now our little journey continues.

I do not know what the future holds. I do not know how William will endure this virus, or when we can take him home or when his surgery will be. I’m learning not to think of that, but to just keep my head down and make the best of the current day I have. There are smiles I can’t miss from Cooper. There are jokes to be had by my sweet husband. There are countless meals and notes from friends and family that brighten my day. There is so much good in my life. As so I live day to day, hour to hour trying my best to deal with the challenges that befall me, and to relish the good moments that I have. And when I have moments of complete despair and wonder if my life could get any harder, I meet someone who has it far worse than I do. And I am reminded of how richly blessed I am.

All that we suffer and go through molds us and shapes us into becoming better people. So it’s worth it. And William is also worth it. I would relieve these last 6 weeks a million times over again if it meant that I could still have him in our family. He is such a blessing and I believe he will be the one leading us to heaven.