‘Got a glimpse of Rudy’s precious cheeks today during a vent tube tape change…made me want to climb up into his crib and snuggle those yummy cheeks! Well, Rudy sure had a hard time settling down today. At the time of my last post this morning, the RT and his nurse were monitoring him closely after an episode where his heart rate plunged and his breathing was quite labored. They suctioned his ventilator tube which normally helps calm him down but today he continued to struggle for his breaths. They then tried to sedate him a bit but that didn’t help either. Dr. Rick came in, examined him, and ordered an x-ray. The x-ray showed that his chest tube was not positioned correctly and about to come out. He felt the best course of action was to remove the tube and see what happens to the fluid in his chest overnight…he wants to give Rudy the night to work some magic and possibly absorb the fluid proving that he doesn’t need the chest tube anymore. If the fluid does build up again then they will put a new, fresh chest tube drain in tomorrow. So he’ll be chest tube-less for one night at least. It goes without saying, though, that it would be WONDERFUL if the fluid found its own way out of Rudy’s chest. The medical team was in and out a good bit all day and my dear friend, Grace, asked “Is it always this busy in here”. Nope, not always…
Poor thing! Nurses Gladys and Angeli and I turned Rudy into our own version of a “Build-A-Bear” elf yesterday while I nervously awaited the call for transport to the cath lab. I was actually feeling very relaxed and confident most of the day…there really wasn’t any reason to be nervous but there was an adreneline rush let down after-the-fact which made me realize I was a little wound-up.
Yesterday was also a big day for our friends, the Elliots. Their little Logan took up residence in the CTICU 5 days after Rudy so we had 8+ weeks to bond with Rayme, Brett and their family while Logan was successfully treated for a serious heart condition. We celebrate their discharge yesterday and since they are fellow Santa Barbarians, Rudy is looking forward to many playdates with Logan in the future. Congratulations Logan!! We miss you but are so thankful for your progressing recovery!!!
Rudy is 9 weeks old today. His hair is starting to lighten and curl up a bit on the ends. It makes me wonder if he will have ringlets like Wilson or wavy hair like Max. He slept comfortably last night and was alert early this morning. Given the results of yesterday’s heart cath, the plan is to start weaning him again off the vent. They started very slow this morning taking his bpm down to 30 from 32 – not a huge change but he doesn’t seem to be tolerating it very well right now. The nurse and RT are standing at his bedside monitoring him closely until he settles down. Boy, is he agitated! (Much like his Daddy who is at home still unable to find a comfortable position to get some much needed rest).
So, we continue to wait for that breakthrough in the fluid flow and in his ability to wean the vent. The numbers that chart his nutrition progress are on the rise so that’s a plus. I’ll let you know how he’s doing later this afternoon…
It’s 6:30pm and our little man is back safely in his room…tucked snugly in his crib. It went well…Dr. Dan called me from the lab when he finished to tell me that everything looks good. The good news is that things look good for the Glenn surgery…the bad news is that everything looks good and there isn’t anything they can “fix”…no, actually, that’s good news too it just means we’re back to waiting with no real answers as to why he isn’t getting better faster. But those are considerations for tomorrow…right now, I’m just glad he’s back and we’ll focus now on getting a good night’s rest.
It’s a little after 5pm and the procedure is happening now. I left Rudy in the Cath lab sedated waiting for Dr. Dan who was addressing an emergency in the CTICU. Turns out the emergency is in the room next door to Rudy’s so when I got back to Rudy’s room I was able to wish Dr. Dan well as he headed down to Rudy…a few minutes later he was back up tending to the little baby girl next door (please say a quick prayer for this precious little one who has the same condition as Rudy) but he is now back down with Rudy again so things should be underway.
If Dr. Dan does only one catheter, the procedure should take about 90 minutes. If he sees something in the first go around that warrants a second catheter, then the procedure could take 3+ hours. So, I’ll post again later tonight when Rudy is back safe and sound.
Transfer from crib to table.
Knocked Out
Cath Lab
Dr. Gary Satou just stopped in to say he was going to go down and check on Rudy! -Sweet guy!!!
Trish just called to say that they came to pick Rudy up for the cath procedure. He’ll be sedated and then Dan Levi will go with a scope up through an artery in his groin to his heart so they can get a very detailed look at all that’s going on there. It’s a relatively safe procedure, but we’re praying for Rudy and that there might be something Dan sees which might indicate why he isn’t moving off the plateau he’s been on. More updates to come…
…but I’m starting out this Monday more encouraged than last. You might recall my concern (or maybe just my weariness) last week at the weekly staff changes that seem to bring with them changes in Rudy’s care plan that leave us feeling like we’re in the middle of a ping pong match. Well, maybe the changes aren’t THAT “back and forth” but even the subtle changes from week to week can get confusing after a while. Anyway, I came back from breakfast to find Dr. Rick in charge this week and, although all of Rudy’s doctors are great and I shouldn’t have favorites, Dr. Rick is one of my favorites. (I can post that because I don’t think he reads the blog! Ha) Simply put, he is comforting to have around…I don’t know what it is about him but he is always so calm and measured, never in a rush, always stops in and conducts a physical exam on Rudy himself…so tender with him and, most of all, seems to appreciate our ever-growing menagerie of artwork and knick-knacks always taking the time to look around…next time he drops in I have to remember to show him the dancing Christmas tree!
Another Hero - Dr. Rick
I also got a chance to talk with our surgeon, Dr. Brian, and the cath-man, Dr. Dan, (also favorites) so I feel like I’ve had face-to-face updates from the men in charge and that is always reassuring. So, where do we stand now? Not a whole lot has changed in Rudy’s condition but when I got back to him last night after the long weekend, he seemed better to me…his color was good and he wasn’t as fussy. He has battled a fever off and on all weekend so he has been on antibiotics, his fluid output is slowly decreasing but not yet enough, his nutrition numbers are climbing so that, too, is slowly inching to where it needs to be. All the indicators TO ME say we’re moving everso slowly forward and it is still a matter of time. But as Dr. Rick put it this morning, “there’s no known reason why he shouldn’t be thriving and off the ventilator now”. That said, Dr. Brian and Dr. Dan feel strongly that a heart catheter is the next step and they have scheduled that procedure for tomorrow (Tuesday). The information they can get from the catheter is something they will need in preparation for Rudy’s second open heart surgery in about 4 months (called the Glenn) and doing it now might shed some light on why he’s not progressing. Dr. Dan will conduct the procedure and he just finished drawing me a very nice picture of what he’s going to do on my whiteboard! Although Rudy’s heart function looks great on all the echos (ultrasounds of the heart), there could be something they are missing. I’m feeling okay with it especially since this is a procedure he’ll need in a couple of months anyway but I wish he didn’t have to make another trip downstairs as that trip is always so labor intensive. I trust that the docs are covering all the bases in their search for just the right balance of everything but I can’t help but think over and over that God knows exactly where the hold-up lies in terms of Rudy’s progress and I’m praying fervently that God will intervene by giving Rudy’s system a gentle kick in the pants to jump start whatever needs to get movin’. How do you like my technical analysis and action step? I’m off to lunch but will update later if I get more detailed information on the plan or it somehow changes!
P.S. It’s December 1st…Happy Birthday Grandma Jo!!!
Rudy's Beat 