Trach Collar Trials Begin!
The attending on service this week along with cardiology and pulmonology are all in agreement to start working on weaning the vent and really start strengthening Porter's lungs. They wanted to start with pressure support trials on the vent but I said Porter has never done well with those but said he has done well in the past with the trach collar trials. The cardiologist said that they never just take someone completely off the vent and wanted to try the pressure support trial first so I bit my lip (for about 2 minutes) which is about all Porter lasted on that setting. Porter was crying and squirming and was clearly uncomfortable so I stated again that he does not like that setting and I wanted them to try the trach collar (taking him off the vent completely and circulating humidified air at the end of the trach). Long story short, he hesitantly agreed to give it a try. Porter squirmed a little in the beginning but after a couple minutes he was smiling and playing with some toys. They looked at me and said, huh, I guess you were right. Yep~ not our first rodeo with this. Porter did this for about 18 minutes before we put him back on the vent and tomorrow we'll give it a go two times throughout the day. Hopefully this will be good info for the doctors to have when they have the next medical board review.
I think I have now met with every single specialist involved with Porter's care unless they decide to have podiatry, audiology, belly buttonology, hair folicleology or any other ology of the sort come in and assess him. I have received information from pulmonology, immunology, neuro surgery, neurology, genetics, PT/OT and cardiology that disputes the information and reasons we were given as to why (even though it was unofficial and the MRB was tabled) they wouldn't consider Porter for transplant here or even as a back up to the complex surgery. I also met with someone from family advocacy to express our disappointment in the lack of communication between teams and the constant mix of information that we are being given. There is a big cardiology conference out of town this week so we will have to wait for the following Friday before they will have an official MRB and present Porter's case again. More waiting.
Porter had a great session with PT today. His core is getting stronger and stronger. He was able to lift himself up from "falling forward" while sitting, the PT just had her hands around his waist to help stabilize him. He held himself up in the exersaucer better than I have ever seen him do and he reached out for my face while sitting in there. We have asked if they will do another developmental assessment before the next MRB becasue he's doing more now than he was 3 weeks ago so we'll see what they say.