Almost to Goal
I apologize for the lack of an update last night as hospital time got away from me, and Liam decided he wanted to be a night owl. Yesterday was another solid and steady day and Liam handled both 35ml and 40ml per hour well with his continuous feeds. That means that in the next couple of hours we will increase his rate to the goal of 45ml per hour. If he can tolerate this rate we will be able to take him completely off IV fluids (his IV nutrition was stopped overnight), and then it will come down to tolerating his usual medications given via his stomach rather than IV.
All in all, we see there is light at the end of the tunnel! We are still cautiously optimistic as Liam has proven to reverse course in the past, but if things go smoothly we could be getting him home fairly soon. That creates its own logistical challenge as we will have about a 14 hour drive home through the desolate landscapes of Iowa and Nebraska. Growing up in Southwest Kansas there is a beauty to the plains, and a lot of it that reminds of home. But, when you are desperate to get your medically complex son back home the hours in the car can feel daunting. That being said, when Liam is safe and ready to go we will be excited to hit the road back to Colorado.
Thank you as always for the continued prayers and support. We are so blessed by all of you. May God greatly bless your Sunday.
Praying for GOD’s perfect timing and protection both while Liam is still in the hospital and as you start your journey home. Just so you know we have a lot of family in Des Moines and friends that are like family in Lincoln. May that bring you a little peace knowing there are others on your path back to Colorado that I KNOW would jump in to support your family if extra hands are needed for something.
Blessings to all of you for continued improvement and safe travels home