Today is a milestone day for Rudy. He turned nine months old! Nine months full like we never could have imagined. In looking back over the pictures since October, the way he’s developed is remarkable, but I’m also very aware of the traits that are taking shape inside him. In overcoming all that he has, Rudy has been a model of tenacity, perseverance, patience and contentment. I can look at him in one light and see a frail little baby; but then I look at the way his chest pumps up and down, stretching the various scars from all of the different procedures and I see toughness personified. He’s fought hard to get here and we are so proud of our little man.
Today is an important milestone of a different sort. Our friends in the recovery community will be pleased to know that today is his CLEAN date. An unavoidable byproduct of what he’s had to go through is that Rudy has not lived a day of his life without narcotics…until today. In most hospitalizations, patients are able to use narcotics for limited periods without any lasting impacts, but given that he was there for seven months, five surgeries and all of the other pokes, prods and procedures, there was no way for him not to get addicted. In his last few months at UCLA, the team switched him over to methadone (the slower acting, longer lasting narcotic they sometimes use to help people get off heroin). Even this had to be weaned very slowly as Rudy had some tough bouts of withdrawal the times we went too fast. He came home on .3ml every 8 hours (which is already very little, but too much to cut cold turkey) and we have been stepping him down about .02 ml every 5-7 days. We brought him down to .03ml last week (a fraction of a teardrop) and cut him off today. We stood ready with the Tylenol in case he looked like he was struggling, but he didn’t require any of it. We’ll have to watch him for the next few days, but in the meantime I’m now looking for an age-appropriate big book in case we need to start working the 12 steps. Anybody want to be his sponsor?
It’s great to have our little addict in recovery, but that doesn’t mean medications aren’t a big part of our life. He’s still on 11 different prescriptions (for all you pharmacy geeks or heart parents: Digoxin, Captopril, Spironolactone, Diuril, Lasix, Albuteral, Atrovent, Levothyroxine, Aspirin, Bactrim and a Multivitamin). We do meds at 6am, 2pm, 6pm and 10pm. The biggest batch comes at 6am just after the food pump alarm goes off to signal the end of his overnight feeding–more reliable than an alarm clock. The other morning I had the presence of mind to snap a picture of our little pharmaceutical operation. Rudy will always be on some medications for the rest of his life, but we don’t expect it to be this many and we celebrate each time we get to move another bottle over to the dormant section of his tray. I think there’s five there now, so we’ve made some progress. Go, Rudy, Go!