It's midnight on January 3rd and I'm awake waiting for an IV infusion of the antibiotic Zosyn to finish. Drew went into the hospital on New Years Eve for a bronchoscopy and to get a PICC line so that he could get IV medication; a "tune-up" if you will. We decided that we weren't okay with our current regimen, cycling inhaled ceftazadime 14 days on/14 days off, since he could hardly make it from the end of an on cycle to the beginning of the next without needing some kind of medical intervention. He's got a viscous bug deep in his lungs called achromobacter that is resistant to [most] antibiotics, and its wreaking havoc. Havoc must not know me and my relentless pursuit to save my sons life.
Being in the hospital for anything is unpleasant. Surgery is the worst. I'm certain that there are varying degrees of this agony that is handing your baby off to total strangers and literally placing his life in their hands. Whether it be for a life-saving surgery or a 15-minute "quick look" at his airways, it sucks for me just the same. I try to trust the people that I hand him off to, but I don't know them and they don't love him like I do. He cried this time. In the past he's been so little, so oblivious. This time he was too, until we walked into an OR full of doctors and nurses in gowns and gloves and masks. He cried and clung onto me, silently begging me not to leave him. They tried to ease his anxiety by drawing a silly face on the balloon that fills with "sleepy air" and challenging him to blow it over with each exhalation. He zoned out, went limp, and then we were escorted out. The very kind nurse suggested that we grab a bite to eat while we waited. The procedure was scheduled for 92 minutes, though having been through this more times that I can count I knew that it wouldn't be more than an hour.
We checked into the Same Day Surgery waiting room, an unpleasant room that is smells like a combination of bad coffee and tired people, the air almost visibly thick with anxiety. We gave our cell phone numbers because we were going to be leaving the waiting room to meet the Homecare nurses to be trained, for the 4th or 5th time, on the administration of IV antibiotics from home. I cried on our walk from the third floor to the first. I hate to leave him, especially knowing that he was so scared. I was less worried about the approx. 92 minute procedure than I was about the results that we have yet to learn.
We met the homecare nurse on the first floor and told her that we've been through this all before. I've never met a more efficiently run organization than homecare. They make tough situations run smoother than you can imagine. They show up when they say they will. They always, always, send you exactly what you need and often times even extras or "just-in-case" items. They call to remind you and they haven't yet messed up (for us anyway!). They make my life easier, and for that I love them. We needed to show the nurse our competence in caring for our son at home while he has a central line to his heart through which we administer a strong intravenous antibiotic. I've probably done it 100 times, but I simply could not focus on the task at hand. My baby was just put to sleep, and I didn't know what the outcome would be. I know that I need to wash my hands and put on gloves. I know the steps: clean the tray with 2 alcohol wipes, get out two saline syringes & 1 heparin, 1 tubing, one alcohol wipe, one swab cap. I know to check the label and prep the tube. I know to flush his line before I hook him up, and to always turn it on with the alarm in case there is an occlusion. I promise you, I have never been more diligent about a procedure in my life than one where I could literally take his life if I do it wrong. Yet in my worried, anxious state, I stumbled through it, making mistakes all along the way. She understood.
After only 30 minutes, my cell phone rang. It was the Same Day Surgery receptionist letting us know that the procedure was done and that the doctor was ready to talk to us. The results were good. His lungs looked better than they have almost ever before. He has severe tracheomalacia and bronchial malacia and for the first time since he had his very first bronch, very very early in life, there were signs of improvement. There was no mucus in his nasal cavity. His trachea was open, though there was still a near complete collapse when he would cough. There were areas of mucus, typical in a CF patient, that were washed and extracted so that they could be cultured. Overall his airways looked great. The opportunity to look at the physical shape of his lungs was a secondary benefit though. What we were doing the procedure for was to collect mucus for a culture, to see what kind of bacteria is living in his airways and causing him so much trouble. Would it still be just the achromobacter? I sort of hope so. Would there be something else, something that if treated differently would not be causing him so many problems? Would there be something untreatable? Dear God I hope not. But we don't know. We don't get that information for a week.
So we are home now, on an IV, an oral and an inhaled antibiotic combination therapy. It was recommended by an infectious disease doctor who has had some experience dealing with achromobacter. It is a long shot that we would ever be able to get rid of this bacteria, but so help me God I will try. It is exhausting running IV meds from home. They need to be done very specifically 8 hours apart so as to not hurt his kidneys. We also need to give him his oral antibiotic every 8 hours, so we wake him up every so slightly right as we finish up the midnight IV to get him to take it. The inhaled is just twice a day, so we do that with our morning and evening breathing treatments. Our cabinets are filled to capacity with medication, and he's not even "really sick" yet. I hope he's never "really sick". I hope that his cure is coming soon. Until then, we will continue our fight.
It's been 35 minutes. It's time to unhook the IV and go to bed. We will do this all over again in just 8 hours.