It’s well past 10pm and Rudy is finally resting back “home” in the CTICU after a very long day. Rudy’s adventure in the cath lab lasted about 4 hours this afternoon. He was fairly calm in the PACU right after his procedure but by the time he was transported to the ICU for overnight observation, he was worked up and irritated. It took some methadone to give him some relief but that’s understandable as his last feed was 4am, his last meds were at 6am and he had a very full experience in the cath lab. He did great and I’m so proud of him.
Rudy had a wonderful team with him today. Dr. Dan and fellow Dr. Leigh along with our SB Cardiologist Dr. Harake conducted the heart cath. They ended up gaining access through the groin and neck. Dr. Judith Brill knows Rudy well from her rounds as one of the PICU attendings but she is also a fabulous anesthesiologist and we were blessed to have her caring for Rudy today in that capacity. Because they went through the neck, Dr. Brill had to suture his trach in place as they needed to take his trach ties off and he came back with an IV in his forehead. So Rudy has a number of tender spots this evening that, I’m sure, are pretty sore. Dr. Brill was our full-service anesthesiologist today because in addition to her official duties, she removed a couple of chest stitches that were hanging around way too long AND she swapped out Rudy’s g-tube for a new and improved button mic-key with a less bulky, low-profile. Her willingness to do that for us saves us a trip to the hospital in SB as the swap was a bit too involved to do in our GIs office. Not to make it all about me BUT Dr. Brill sure helped make my life a little less complicated today and that’s really nice! Ha ha The plan is to watch Rudy closely tonight to make sure he rebounds from today safely and if all goes well, we should be allowed to go home late tomorrow afternoon.
There is much to process from today’s cath. In general, I think we have reason to be encouraged. As Rolf mentioned earlier, the team called for consent to do an angioplasty in the right pulmonary artery because they detected some narrowing of the artery. They also coiled the right collateral artery which, I think, means the artery was tied off reducing the overall blood flow to the lungs. This will prove helpful at the time of the Glenn but will make Rudy look a little more blue in the short term. Dr. Brian was consulted and given the information gathered in the cath lab and everyone is in agreement that as far as the heart goes, things are looking good. Rudy hasn’t quite grown out of his shunt yet which means we don’t have to rush towards the Glenn. In fact, if we can keep Rudy’s sats in the 70s, we could POSSIBLY wait until Rudy turns one before we do the Glenn!!!! Waiting 2-4 months for the next open heart surgery would allow us valuable time to get Rudy fattened up and stronger.
As has always been the case with Rudy, however, we are facing a challenge unrelated to his heart defect. Today’s findings also confirm that his lung function is still weakened and not what it should be. He just isn’t strong enough to expand his lungs fully. This is chronic for Rudy as he has battled this condition from birth but it doesn’t necessarily mean it will be a permanent problem. It will take time, though, maybe even up to a couple of years so we need to be prepared for Rudy to be oxygen-dependent even after his Glenn. For now, the team’s recommendation is to send Rudy home on a continuous oxygen supply. The extra support will allow him to focus his energy on growing as opposed to breathing and it will help him sat in the 70s – a more preferable range while we wait for the Glenn. Sending Rudy home on oxygen certainly isn’t what we hoped for out of this trip to UCLA but I’m all for giving Rudy what it takes to keep him comfortable and help him grow in preparation for his next surgery.
Rudy has proven himself strong and an overcomer on so many occasions. I trust he will catch up and develop GREAT lung function in time. Please join us in praying specifically for his lungs and muscle strength in his chest!!! Tomorrow will also probably involve some more training in how to care for Rudy on oxygen so please pray that we won’t be delayed in going home due to logistics. It looks like we’ll have to pack away our candles and stay clear of open flames in general for a season until Rudy gets past this bump! ‘Just another little adjustment in the larger scheme of things. As always, one day at a time…