We saw Dr. Harake yesterday (SB Cardiologist) and he was pleased with the Pulmonologist’s report from Tuesday. Rudy’s echo looked sound as well so this has been a good week for our little man. Dr. Harake still feels we have some time before the Glenn…we get the impression from the UCLA team that they would like to move forward so, at this point, we’re going to let all parties discuss the situation and come up with a plan. As much as we would love to get the Glenn over with, we trust the professionals to come up with a plan best for Rudy.
In the midst of all the doctor appointments this week, we did have time to catch Rudy on video doing what he does best…being cute…
Rudy’s therapist wants Rudy sitting up more and, thankfully, he is tolerating it more and more…it used to be that he couldn’t sit up more than a few minutes but this week he sat comfortably for 15 minutes!!! Rudy enjoyed some “sibling therapy” while practicing sitting up earlier this week…
And then my two hams wanted to teach Rudy one of our old family favorites…
Later that day, Wilson had time to love on the big “sittin’ up” boy…
October 6th will never be “just another day” for us. Even if Rudy’s birthday didn’t come just before to remind us, it will still be a long time before I don’t shudder a bit upon hearing this date. Ever since last year. Hard to believe it’s already been a year since this and this. It’s amazing how reading through the posts can bring us right back to the day of Rudy’s surgery with such vividness.
As it turned out, it was quite easy to feel like we were back at UCLA again…because we were. In some conversations we had last week regarding planning for the Glenn, the team thought it wise to have a consult with a pulmonologist. Thanks to Rudy’s friends in high places, it all came together very quickly and they were able to fit us in today.
So there we were with our recollections furthered by being in the very place it all took place. Up very early like we were a year ago. The streets, sidewalks and hallways so familiar we didn’t even need to look for signs and room numbers. Same parking lot. Same patio of uneasy people.
I recall how scared I was. But it was quickly replaced by reminders of how far we’ve come. It was really hard to stay down when one of the first people we came across was our hero:
That’s right folks…THE ONE AND ONLY CESAR!!!!! Providentially, the first person we saw when we walked into the building was Enrique (Cesar’s Dad) as they were there for follow-ups. As we each had our own slate of appointments we didn’t have long to visit with Cesar, Enrique and Maria, but it was such a blessing to see them. Glad Rudy has tough guys like him to look up to!
On the medical side, we were very encouraged by our appointment with Dr. Pornchai Tirakitsoontorn. We don’t include every doctor’s name, but when you get one with a name as cool as Pornchai Tirakitsoontorn, you’ll risk melting down your spell checker and throw it around a bit. Dr. Rick insisted that Rudy get the best and, while I feel sorry for you if you have to call his name when you’ve fallen into a well, if you need a pulmonologist, Pornchai Tirakitsoontorn (the Clinical Director of Pediatric Pulmonology at UCLA) is your guy. Pornchai Tirakitsoontorn. It sounds just like it’s spelled, dummy. I know–y0u’re wondering how many times I’m going to type “Pornchai Tirakitsoontorn”. It took me awhile to master it, but now that I do it kind of rolls off the keys…
OK, so I am a bit giddy over the time with Dr. T. We’ve found that consultations with new specialists can be unsettling, but this one wasn’t. Rudy’s lungs have been a point of concern (they couldn’t extubate him and had to resort to the trach), and pulmonary function is a big issue when it comes to the Glenn, so we were eager to have a thorough analysis. Dr. T came in clearly knowledgeable of Rudy’s history and then spent over an hour with us going over details, conducting his own exam and then sending us for a chest Xray. Bottom line, he feels that Rudy is doing great. The lungs are strong and clear–much better than he thought they would be from going over Rudy’s history. The chest Xray today looks much better than the ones from his hospitalization 5 months ago. Dr. T said that, if he didn’t know the Glenn was coming up, his recommendation would be to move toward eliminating the trach!
This is such great news. All along we’ve been operating under the hopeful assumption that the trach was an intermediate step to get Rudy breathing on his own and not a permanent need. We feared coming out of that office with some tough news, but the assessment was that Rudy has gotten bigger and stronger and is breathing better. No timelines for how it will all come about yet (the Glenn comes first); but we’re very happy.
After leaving Dr. Pornchai Tirakitsoontorn (sorry, one last time), we finally got to make the walk up to the main hospital and to our former home on the 5th floor. We were visitors not patients. So many spots brought back feelings of weariness and fatigue. I don’t think we’ve seen the last of that, but today it was fun to confuse Roger as we buzzed our way into the unit. So great to see everyone there and enjoy such a warm welcome. Again, I’m amazed by the ability these remarkable people have to be warm and enthusiastic over our return and focused on the pitched battles going on in those little bodies in all those rooms. I’m so glad we got to see so many of you all in the midst of the important things you do. We didn’t get many pictures, but here’s a couple:
It’s hard to put into words what you feel when you’re with the people who saved your child’s life, but it was rich. Thanks everyone. It was great to see you. Thinking back on our day, I can’t say October 6th hasn’t passed without any tears shed but this time they weren’t those of fear and uncertainty, but gratitude and awe over what’s been overcome.
The running posts yesterday tell the story very well. It was a full day with much to celebrate. We’re so grateful for all of you in SB who celebrated with us and for those who sent us pictures from around the globe. How fun! Please forgive us as we’ll be tied up through Saturday, but will look forward to posting all the pics and sending on the favors. There’s still time to send yours!
It’s overwhelming to consider all that we’ve been through in a year. Just this morning, I spent some time reflecting on the journey and how it all started. They told us it would be tough, but we never thought we’d have to fight so long and hard. I don’t think I’ll ever be able to recognize Rudy’s condition as a “good thing”, but there is still a place to be grateful for what this has brought about our family.
The next leg of the journey feels like it might be on us before we know it. We’ve had some communication with UCLA and next week come the appointments which we were able to put off until after this milestone. But details on that when the time comes…for now I think we’ll extend the celebrations into the weekend.