Hooray! Hooray! The little superstar passed his swallow test!! It was really quite remarkable to watch the images on the flouroscope…you could tell right away that the contrast fluid was going down the way it’s supposed to. Speech therapist Carol conducted the test and gave Rudy the contrast through a syringe at first, halfway through the test she said, “He’s really sucking on this syringe, I’m going to try a bottle”. The minute she gave him the bottle, he latched onto it like a pro and drank from it with no problem. The whole thing brought me to tears. OT Nichole came down to watch as well and we gave each other a big hug in celebration of Rudy clearing yet another really big hurdle. Like I told Dr. Rick when we returned from radiology, it’s just so nice to have a definitive, no-doubt-about-it, POSITIVE result where Rudy is concerned! Everyone who heard the news was quite excited for Rudy and his BIG step toward home.
There was alot of talk about discharge details today so that certainly added to the excitement. We’re still a couple of weeks away from bringing Rudy home (at least) but it is helpful to get started on the many details that need to be addressed. I go to CPR class tomorrow morning and get trained to do CPR on babies with a trach. Rolf and I both need to practice suctioning Rudy’s trach and learn how to change the trach completely as that will need to be done each week. We’ll need to learn how to care for and administer feeds through his g-tube, etc. We need to find Rudy doctors up in SB and start getting things settled for him at home. Wow, there are so many things to think about right now!!
I tried to put aside the rush of details in my head this afternoon and focus on a little sucking therapy for Rudy. He is clear to start the non-nutritive sucking therapy so we tried it for the first time. I brought him to the breast after pumping empty (he’s not allowed to ingest the breastmilk yet) and let him “find his way”. It’s definitely a new feeling for him and I’m not too sure what he thought of the whole thing but he did finally relax and got comfortable sucking. He isn’t quite latching on securely but he’ll get there…it’ll take some practice and I think he’ll be more motivated to latch on when he’s allowed to drink the milk while nursing. So fun and crazy!!! One of the charge nurses said she has never seen a baby as sick or as intubated as long as Rudy do so well at the swallow test or take so quickly to nursing…our prayers are being answered.
So, the process continues forward…Rudy is currently at 28ccs/hr on his feeds through the g-tube. They’ll, most likely, introduce breastmilk tomorrow and it could take a couple of days to see if the chylous fluid will return. If it does return, he’ll go back on the Tolerex formula and I’ll look more closely at what it will take to skim my milk of it’s fat. If it doesn’t return, then we can get rid of the Tolerex finally start using the MEGA-supply of mama’s milk we have stashed away in the unit! Rudy will spend a total of 22 hours off the vent today which means they will bump it up to 24 hours tomorrow!!! At that point, he’ll stay off the vent and they’ll monitor him closely for a couple of days before declaring him “vent free”. Other than that, he has a couple of meds they need to start weaning him off of and the surgical team will remove his “frankenstien stitches” early next week. Things are falling into place…finally!
We’ll never know what tomorrow is going to bring but it sure is wonderful to end a day with Rudy with a strong sense of hope for a brighter tomorrow.