It’s hard to believe that tomorrow marks the one-week anniversary of Rudy’s homecoming. The week has flown by and we’re adjusting to life with Rudy at home. Trish mentioned the simple joy of both being at home together without any feeling of being torn. Some habits die hard–after 27 weeks in the ICU I had to catch myself tonight as I picked up the phone for an evening call down to UCLA for an evening check-in with the nurse.
Rudy’s routine takes some learning and time, with periodic meds and treatments throughout the day that start at 6am and end at midnight. So it cuts into sleep, but what newborn wouldn’t? Of course his condition tends to keep us on our toes and has it’s humorous moments. This morning he seemed more agitated than usual and none of the usual fixes (diaper change, suction, food) seemed to do the trick. Understandably, thoughts of cardiac complications are quick to fill one’s mind but in watching him chomp furiously a closer examination revealed a tooth poking through. Considering everything else he’s facing, we tend to forget the standard baby stuff–this might also explain the fever episode on Friday.
We had an appointment with our Pediatric Cardiologist here in SB today which stretched over 2 hours. It was a bit surreal as our journey with HLHS started there the day after our troubling ultrasound in August. Hard to believe all that’s transpired since then. We were very pleased with his thoroughness in having been in contact with the team at UCLA and then doing his own Echo and EKG to get a baseline on Rudy’s function. It is very important for him to be working together with our pediatrician so they will be in contact on the different medications he needs. This seemed to be more seamless at UCLA where all the doctors worked on the same floor, but the doctors understand the acuteness of Rudy’s condition and express that it’s important for them to maintain good contact. Much of what they have to assess is the medications he’s on that stem from the various traumas he’s had (thyroid, chylo, kidneys, stomach and, oh yeah, heart surgery). The process needs to be careful and measured without too many changes at once to not upset Rudy’s balance. I continue to be in awe at what Rudy has overcome, but today also made me aware of the fragility of his condition. He still needs two major heart surgeries whose outcomes can be greatly impacted by minute variances in pressure within certain veins or the function of relatively small valves–all things far beyond our control. The walk of faith continues as all of this is in hands much greater than ours.
Rudy may not be in the ICU but it seems that sophisticated medical machinery seems to follow him around, as this photo from today’s appointment bears witness. Not your typical well child visit….