It’s Tuesday at noon and we’re sitting with Rudy waiting for various test results to come back. The blood cultures take a bit of time so we don’t quite know what we’re dealing with yet in regards to infection, etc. but Rudy does seem to be more comfortable today which is always a relief. Last night was troubling for me on many levels but I was fixated on the fact that his eyes were open but they were unable to focus on or track any movement…they just slowly swirled around “looking for something” as he struggled with his breathing- probably due to various medications but it was hard to watch nonetheless. It was clear he was tired but he just couldn’t go to sleep. Funny, Mommy and Daddy had the same problem!
What’s amazing AND maddening is how quickly his condition can change. Earlier in the day yesterday, he was alert, bright-eyed and seemingly close to getting extubated.
By the evening, he was battling a fever, struggling for a breath and just not “with us”. I tossed and turned throughout the night wondering if we’re still within the expected range of “ups and downs” the doctors warned us about. After a talk with the doctor this morning, I think the answer is yes. Rudy tried a sprint this morning and lasted 30 minutes so they stopped the exercise and have decided to let him rest – no more sprints for today. But they have made some adjustments on his medications as this may have contributed to yesterday’s challenges.
My prayer this morning was that we’d have a day to simply love on Rudy with our presence and our kisses without the constant distraction of monitor alarms going off and procedures for which we need to leave the room and so far that’s the kind of day we’re having.
It is so clear that Rudy is well-loved by all the artwork that is lining the walls of his room from cousins, friends and siblings…especially Olivia. This week’s masterpiece from Livy says it all “Rudy is the wun i love”. How blessed this little man is! Rolf and I are doing our best to communicate everyone’s love and best wishes to him as we hover over him, talk, and stroke his head all the while trying not to stimulate him too much. We continue to walk along with Rudy this very fine balancing act. Thank you for supporting us in the walk.