Saturday morning we got a huge package in the mail that included an entirely new and different nebulizer machine, a giant box of medication, a sterilizer machine and, thankfully, a DVD explaining what to do with all of it. When we got it all figured out and got Drew hooked up to it, we thought we were home free as this machine administers the medication in just about 3 minutes. Well, that first 3 minutes was the longest and close to the worst 3 minutes of my life. The mist is so thick and dense that comes out of this machine that Drew was literally acting like he was being suffocated. Martin and I were both holding him and bracing him and he was fighting for his life, thrashing about, turning purple, doing everything in his power to get that mask off of his face. We felt it necessary to try to get the antibiotic into him, especially since a 28 day supply cost just over $6,000. Waste not want not!
The next dose wasn't quite as bad, but we were noticing shortly after giving it to him a tightness in his chest. He was doing a lot of coughing but it was all a very dry cough. His breathing was very labored and noisy. We were using a lot of Atrovent to try to open him up on Saturday and Sunday, and then today it finally all came to a head. He again fought for his little life as we tried to complete this 3 minute therapy this morning. By lunchtime, he had used his inhaler several time (prescribed to be used no more than every 4 hours). I had to do the medication again right after lunch and he simply couldn't handle it. I am not exaggerating when I tell I felt as though he was being suffocated by this medication. He got it off a couple of times and I finally gave up. I put him down for a nap and he cried and coughed and gasped for air for 45 minutes before I gave him a double dose of his Atrovent. I tried again for a nap but he couldn't pull it together. He was beat red, retracting around his ribs, and so unsettled.
I called his doctor and they said to stop the medication. The prescribed a steroid to try to relax some of the inflammation and bring him back to even. They also said that if he was needing Atrovent more than every 4 hours then he needed to be brought into the hospital for observation. My hesitation with going to the hospital is that 1) he ALWAYS picks something up when we are there and 2) if you're not going to do anything different than I'm doing here, why do I need to be there. They "monitor" him. The only thing they would do for him that I'm not is giving him oxygen if necessary. They say that they can administer the Atrovent more frequently if necessary (which I don't know why I can't do at home).
I was worried about him all day. It may seem silly that I didn't take him in, but being in the hospital is no walk in the park. I was close today, but with the help of his doctor and nurse, and my wonderful husband keeping me calm and reasonable, we got him to a comfortable level of of breathing both for him and for me and got him his steroids and got him to sleep. I'm hopeful that without that inhaled antibiotic (without any inhaled antibiotic) for a day or two, his airways will recover from whatever distress they were being caused and he will be back to himself. My fear is how we will deal with things like pseudomonas if it continues to stick around, because its most effectively treated with inhaled antibiotics. I will try not to worry and cross that bridge when we come to it. Maybe he will be older and better able to tolerate them by then. Maybe the pseudomonas will never come back. Maybe they'll find the cure before he ever needs to worry about this again. A girl can dream...