Today was non-stop. Eventhough we still don’t have a definitive timeline, preparations for Rudy’s discharge have already begun as there is alot to learn and organize in the next few weeks. We were given a book of information today entitled “Hospital to Home: Your Child’s Tracheostomy” which I began to read this afternoon. I also got my first trach-suction lesson from nurse Filma and practiced on the “trach dummy” she and nurse Sara made for us…see pic below! ha ha I was all prepared to suction Rudy when the surgical team arrived to remove the trach sutures and replace the trach tube for the first time. I’ll try again tomorrow. I met with various doctors and had a quick visit with Nurse Gwee who will be our case manager and help us get situated at home with the right equipment and help when the time comes. So, all in all, things are coming together…
The big topic of discussion today was Rudy’s stomach and feeds. I met briefly with Dr. Dunn and his team to confirm the plan for Rudy’s next (and hopefully LAST) surgery for this hospital stay. The surgery is scheduled for early Friday to be performed by Dr. Daniel DeUgarte. It will be an open surgical procedure for three purposes…to do a Nissen funduplication, a pyloroplasty and to insert a G-tube into the stomach. The first two treatments will, hopefully, address Rudy’s stomach issues in the long term and the G-tube placement will allow feeds to start asap so we can get him off the TPN. We certainly hope this will help our little guy conquer the last major hurdle preventing him from going home. Oh, by the way, did I mention Rudy hasn’t used the ventilator since Saturday??? In fact, they wheeled it out of his room again late last night. Everyone is very encouraged by how relaxed he looks breathing on his own. The tube attached to his trach at this point is a trach cuff that humidifies the air he breathes. He’s quite “gunky” so he needs to be suctioned often but he is also coughing quite a bit which is good. He’s making progress and we’ll take it! Thank you, thank you for your prayers…especially in preparation for Friday’s surgery! For now, though, it’s time once again to go to bed…Rudy has found a comfortable position and is fast asleep…like his Mama, he likes to sleep on his side! 🙂
Rudy's Beat 
It doesn’t hurt to laugh……Rudy is a cutie…..the dummy is pretty funny…………Rudy will give you the strength you need, our prayers continue to be with him and your family; and of course extra prayers for Friday, peace…….from a HLHS Grandma[Diana}
How wonderful it will be for Rudy to be at home with his family. You probably know more about the human body and medicine than you ever wanted to know. Savor your time of learning and preparation. Continued prayers for progress and peace.
He looks so cute and peaceful. Will pray for Friday morning and for your continued strenght.
Just keep praying. Just keep praying! Funny dummy. Cute Rudy!
What!? A dummy? Haven’t you ever suctioned a trach before? The nurses must question your competency. If you need any help, I can show you how to do it.
Dr. Rolf
He looks so good! My prayers continue for you and family.
Love the trach dummy is so cute….but Rudy is much cuter. Keep up the good work….still praying for you.
Woohoo!! sounds good and we are glad you have something to put all your wonderful organization and cleanliness skills into! We love you!
Love all the good news. Rudy is adorable. Praying for Friday.
Rich and I are praying for you! We just learned about Rudy this week but we’re becoming big fans of his…
Both Rudy and the little dummy are lookin’ pretty sweet. Congrats on Rudy being ventilator-less. I love seeing his face and the wild “do.”
Hugs from all of us out here in the midPacific,
Katie’s Nana