(Pardon the lack of blogging over the past week due to limited internet access)
When asked to describe the past seven days, the word "phenominal" comes to mind. For so long, it seemed sickness & set backs were on a snowballing path. Now, health is gaining with every day. As we watch our sweet child, sheer amazement floods our minds at all God has brought him through & how well he is doing now; amazement that his is simply alive, let alone thriving! Were it not for the many scars on his tiny body, one would never know the dark road he has travelled. To the eye, he looks like the most adorable 14-ish week old ever! (And for those interested, Isaac now weighs 12 lbs & is 20.5 inches long!)
On Memorial Day, Isaac took his first trip outside! We loaded the stroller with his home vent, charged the IV pump batteries, & with the nurse & respiratory therapist by our side, headed out to the butterfly garden at UNC. Isaac was absolutely wide-eyed on the journey to the garden. And as soon as the sunlight hit his sweet face, he fell fast asleep. The 45-minutes outdoors was truly refreshing for us all.
Isaac continues to hold steady on his home vent & has weaned on the rate from 20 to 14. We've received most of our home equipment & interviewed with our home nursing care company. The bile reflux issues has resolved with a few changes to his medical regimend. He's learned to suck on his pacifier, which is truly amazing in light of never having fed by mouth & having an ET tube down his throat for 10 weeks. What a joy to watch our sweet boy acting like a precious healthy baby instead of an incredibly sick child. And to top off the good news, Isaac is now free of IV lines!!!! The IJ line was pulled yesterday, so the only pump our boy is connected to is his feeding pump!!! For the first time in his life, Isaac has no lines in his veins, nothing stitched to his skin. Words fail to express our amazement & gratitude to where God has brought our son from & the place He has brought him to. Wow! We can now pick up & hold our sweet boy without worrying whether we'll throw a clot or compromise his access. Lord, You are faithful; Your lovingkindness endures forever!
Jordan & I have been training with trach & G-tube care. Our trach nurse, Cindy Reilly, has been nothing short of incredible, walking us through the adjustment process. What a wonderful resource she has been to us, coordinating everything needed for Isaac in the hospital as well as the process towards going home. And speaking of home...we have a tenative home date!!! June 19th! Cindy's working with our home nursing care company, Maxim, to hopefully bump up the discharge date...possibly as soon as the end of next week. It all depends on staffing for Isaac's case. He'll require 24 hour nursing care the first week he's home & then 20 hour care after that. So join us in praying for full staffing for Isaac's case!!
How faithful is our awesome God!!!!!!!!!!!!!!!!