Rolf, Rudy and I started our day at 4:30am and were on the road by 5:30am to make our 8am appointment with pulmonology at UCLA. We were excited to finally meet Dr. Woo who recently joined the UCLA roster of pediatric pulmonologists. You may recall that we sought her out as a second opinion through our insurance a few months ago only to discover shortly after that she was going to be Dr. Pornchai’s replacement at UCLA!!! One of the reasons we wanted to talk with her specifically is because of her specialty in pulmonary hypertension and lung/heart issues.
We like her very much. She’s personable and easy to talk to. She was smitten with Rudy from the start and familiar with his case as she had talked with Dr. Dan before our appointment. In a nutshell, she feels our current drug therapy for Rudy’s pulmonary hypertension is the right approach. She is not too keen on the idea of weaning Rudy from the trach without him passing a sleep study but also recognizes the fact that it will be hard for Rudy to pass in the sleep lab environment so she is putting an order in for a home study. It will require him being observed and monitored 2 or 3 nights in a row but I think he’ll have a better chance of passing it at home. So, we’ll see her again in three months and in the meantime, we’ll work on getting the sleep study arranged.
After the heart cath, Dr. Nina (ENT) asked us to start capping Rudy’s trach again to get him used to breathing through his mouth and nose in preparation for decannulation. Because of Rudy’s cold, we weren’t able to cap him until this weekend. We had him capped all day yesterday and today and although he doesn’t like it at first, he does adjust quickly and seems to be doing okay with it. He is maintaining O2 sats in the high 70s/ low 80s…so we’ll continue to cap his trach during waking hours and hopefully this will be good practice for the sleep study too. Capping his trach, however, means he has to get his supplemental oxygen through a nose cannula and he fights us when we put it on. Olivia said the nose cannula makes her sad because it reminds her that Rudy has HLHS (me too Livy) so it’s an adjustment for more than just Rudy. Thankfully, he doesn’t mess with it much once it’s on so we’ll see how it goes. Rolf did a good job distracting him with a game of ball last night…
So, we have a couple of things to work on between now and the end of the year. In addition to all this, Rudy has his first day of school tomorrow! Considering the long day we had today, I guess we better sign off for now and get a head start on a good night’s sleep tonight. Sleep tight everyone…we’ll post more tomorrow.