Finn has such a good day. We started off the day with PT/OT and rounds then bananas in the high chair and then Mommy had a meeting with all the doctors in a conference room! We get to make these meetings weekly now in hopes of maximizing communication even more so that we can get this little angel better and home especially now that he is showing such improvement! We then went on a stroller ride, had another bottle, played a little, Mommy went to the Mended Little Hearts meeting and he drifted off to sleep.
So, here is what's going on health wise! Visually, Finn is doing exceptional! He has only TWO wires/tubes on him: pulse ox and PICC line. He periodically has telemetry on when he needs infusions when his potassium is low which is about every other day due to fluid output. Now that the chest tube isn't in, we are doing daily X-rays to monitor fluid. Remember that these X-rays are not nearly as accurate as seeing the chest tube output for yourself. Finn's true signs of reoccurring fluid effusions would be if he needed to go back on oxygen and/or retracting. So we will keep a close eye out on that!
We are going to take advantage of the fact that Finn is almost tube free. That means lots of walks and time outside, physical therapy, eating in the high chair and meeting those milestones!
He is currently eating about 2/3rds of what he needs to have nutrition wise. If he can't make goal in the next few days, we will have to talk about feeding intervention bc supplementing with IV fluids isn't good for his already overload of fluids. But he is improving! IF he needs one last chest tube, chest tube #5, we will have to surgically ligate his thoracic duct which is not a very common surgery anywhere especially on babies and especially on babies with Heterotaxy when you don't even know where the duct is. It's a pretty big deal to have to do that.
My heart tells me that this is finally Finn's opportunity to once and for all be able to live his life. He has been through so much and gone through each day with grace, joy and a huge purpose. He amazes me every day at how much he WANTS to be a normal baby.
So I'll end the night with this, it was a quote on a card that I opened from a prayer warrior this weekend and it's stuck with me: "Just when the caterpillar thought his world was over, he turned into a butterfly."
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