So last night, Will struggled with his trach. He felt like he couldn't breathe. After lots of suctioning and a sedative, he finally slept for a little while. He has essentially given up on trying to talk with it, and is now using a white board and marker. While slow, it takes a lot less effort and is much easier for everyone else to understand.
At this point, we still have no idea if Will will be discharged with his trach or not. The ENT resident today stated that they will reduce the size of the trach tubing on Sunday. That will make it easier for him to swallow and talk.
Overall, Will has started shutting his eyes when people come in to chat...and lots of people are in and out of his room. This place is like Grand Central Station today. Speech therapy wants to ensure that he can swallow safely with the change of palate and the trach, every specialty has their own residents who visit, then the entire team of residents visit. With three different specialties and the regular ol' pediatric ICU residents, we see lots of residents. Pharmacy has visited trying to determine how to manage his meds since he doesn't wish to swallow. Nutrition is in preparing for when he will be able to eat and trying to figure out what he can eat as well as figuring out the TPN (nutrition that they will put into his port tonight to at least give him calories) for tonight. The pain management team is in as they adjust his medication to keep him comfortable. His nurse is in regularly (read as in constantly) to suction the trach and help care for William. That leaves very little downtime. It also means that Will is more than done listening to everyone talk about him and discuss how difficult this is. So, he is now sitting in a chair, watching Discovery channel, and closing his eyes when people want to chat with him...."If I don't see you, you don't exist."
Yesterday is still fresh in our minds as we contemplate the incredibly gift of a much less invasive surgery. The fatigue of today is very present. While yesterday was filled with relief and thanksgiving, the reality is that this was still a huge surgical procedure with a huge recovery. Preventing a metabolic crisis is still high on the list of wishes for the day.
Thank you for the prayers and encouragement that have been emailed, mailed, and texted. To know that we are loved, supported, and prayed for is a huge encouragement.