40 more minutes and it will be Friday! We made it to the end of a long, full week. It’s clear this week was a turning point in Rudy’s recovery. I’m not sure Rudy’s condition has changed much but how his condition is being managed has changed dramatically. The tracheostomy performed on Tuesday allows the team many more options in getting Rudy off the vent with little discomfort for him unlike the trauma of extubating and intubating him over and over. Rudy is definitely more comfortable with the trach and now that the focus is off extubating him, the team has been able to tackle the feeding issue pretty aggressively. Yesterday’s gastric emptying test and today’s upper GI contrast test confirmed that there is a delay in Rudy’s digestive system which means the best way to get feeds to his gut at this point is through a GJ tube that goes through his side and directly into his intestines. The team is hoping the surgical procedure to place the tube will happen early next week as everyone is eager to start his feeds. A MRI was also conducted today to look for any possible reasons for the fevers he has been getting which have compromised his recovery in general.
The big push to see Rudy past all his major hurdles is, ultimately, to get him home. The felt need to get him home is growing increasingly urgent as we get closer to the Glenn (Rudy’s second open heart surgery). I agree that we need to get Rudy home and I see that the steps we’ve taken this week are positive ones for him but the steps taken this week also require a huge mental adjustment in what I expected bringing Rudy home would look like. I envisioned our elevator ride with a baby free of restraints and restrictions…not trach, and possibly vent, dependent with a feeding tube. As much as I want to take Rudy home, I admit that tonight I’m overwhelmed and feeling alone. Pushing to get him home does come at a cost…the burden of his care and recovery will fall on us at home to a greater extent than I expected and that’s intimidating. Now, none of this comes as a complete surprise as these treatment options were explained to us many weeks ago as “possibilities down the road” but, of course, I hoped and prayed we wouldn’t get to this point. I feel like I’ve been naively running this marathon for four and a half months thinking that the day we bring Rudy home will be our finish line only to find out this week that this has just been the warm up…the marathon hasn’t even begun!!! Oh, I know, we’ll rise to the occasion, we’ll learn all we need to know to take care of his special needs, it won’t be like this forever, our family will adjust to the things that make Rudy special, Rudy WILL one day talk and eat In n’ Out Burgers with his siblings and someday I may even take a trip to Hawaii and do nothing but lay on the beach for a week, but being confident of all this doesn’t make me feel any better tonight for some reason. I’m tired and weepy and sad and really fighting the urge to indulge in some major retail therapy.
Enough about me and my pity party…the good news is that they started to turn Rudy’s vent settings down today, had him on an one hour sprint this evening while he slept comfortably in my arms and he has been breathing on his own off the vent completely for the past hour. He’s doing great at the end of a full day with two field trips!!! He’s pretty excited to show off for Daddy tomorrow. I guess it’s time to head to bed and get some rest…”afterall”, as Scarlet O’Hara would say, ” tomorrow is another day”.