Day 227 - 🫁 Not Weaning the Peep; But Weaned the Fio2!

Saturday, August 14th, 2021

He has been doing this new thing where he is coughing, then starts choking, then turns purple quickly. He is coughing up his own secretions out of the trach, but it is scary to watch. 

Pulmonologist stopped in and in summary said that he does not want to try to wean the PEEP while inpatient. He said that he believes we should get the GI situation under control before going home. Mom informed him that the doctor will be taking over this week is going to be pushing for our discharge. He said that it is good that someone on the team is pushing for it.

And then the GI doctor stopped in and said he heard Mom spoke to the pulmonologist about concerns regarding the G-tube leaking into the diaper. Concerns about how long this is going to be. He said that it should only be a few days. Mom let him know about she reached out to the G-tube Facebook group of moms and a lot of them say that they've had to vent into the diaper for several months, sometimes permanently. He said that this is not normal. So we're just keeping our fingers crossed! One mom in particular said that they would clamp the G-tube for 1 hour during the day in one hour at night and slowly increase that over time and after 2 ½ months they were able to keep the G-tube clamped.

🫁 James decreased his FiO2! We've been at 35 for a while here in the PICU get over the last few days we have slowly decreased to 30 and now tonight at 25! This is so good since at home we will only be allowed to increase to 40. It will be good to be able to have that much of a buffer if needed for an emergency. 

Dad took over in the evening. James did some tummy time and Dad took care of trach ties. He noticed that James had some redness under his neck so they put Nystatin ointment on it. We will be monitoring this, since up to this point his neck has looked very good.

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭