Rudy turned 14 weeks old today! I’m so proud of him…I’m proud of his will to fight…I’m proud of Wilson, Max and Olivia and their will to remain strong and keep up life’s routine in our prolonged hospital stay with Rudy. I remember sitting with Rolf and the kids in a restaurant in August shortly after Rudy’s diagnosis talking about how it would take a commitment from us all working together to give Rudy a chance at life. I’m not sure they really understood what that meant at the time…I’m not sure any of us really understood what that meant…we’ve already been stretched beyond what we imagined…Rudy’s endured more than we ever imagined…and yet, I’d say, our family is thriving in the midst of it all. We are learning and growing and, in the long run, will be better for all that we are experiencing. Rudy is learning and growing too…and although his journey so far has been one challenge after another, his opportunity at life is due in part to three siblings willing to accept “doing life” differently eventhough it’s really hard at times. ‘Something I can’t wait for Rudy to understand when he’s older.
Today was much like yesterday. Rudy continued at 10bpm on the ventilator and tolerated 3 one-hour sprints. He did struggle with a high heart rate over 200 for a long stretch this afternoon but, thankfully, it did not compromise the progress he has made on the vent. He also spiked a high fever again so he’s back on antibiotics until the cultures come back. It’s hard to determine what is causing what…is he fussy and battling a high heart rate because of the high fever or is he spiking fevers because he’s upset and fitful? It could be infection, it could be withdrawal, it could be him being a normal baby or it could be the start of another “issue”…it’s simply hard to know with Rudy. Although he is off most of his heavy-duty drugs, he did need a couple of “rescue” doses of methadone today to get him to calm down and his heart rate back to a safe range. His struggles yesterday and today are concerning but don’t feel like past setbacks which is good.
The plan is to increase the sprints tomorrow to 90 minutes. I hope to hold him as our time today got cut short because he couldn’t settle down. The only thing that helped at all was the pacifier…he loved the pacifier again today. He sucks so hard but can’t keep the pacifier in his mouth because the ET tube gets in the way. Nurse Denise and I tried to solve the problem with tape as you can see in the ridiculous picture below but it didn’t work. Poor thing…he puts up with alot in our trial and error attempts. I realize I’m at a bit of a disadvantage not “knowing” my baby prior to his hospitalization. His likes and dislikes, what works with him and what doesn’t is all a guessing game at this point. There’s alot to learn now that he is starting to behave like a normal baby…I gladly confront that big learning curve! 🙂