Monday, July 4, 2016

Ready for our trip

Ready for our trip: VA to CA

It's July 4th and we're one day away from our trip to Lucile Packard Children's Hospital in Stanford, California. There's so many emotions and so much to do leading up to the trip, but the family is really in a good spot right now.

Even though it's only been two months since being discharged from Micah's last open heart surgery, it feels like this is the right time to take the next step. Micah's first month back at home was really rough. He was on round-the-clock meds, shots 2x a day, not eating, not sucking his paci, generally distraught, sickly, exhausted most of the day, woke up needing water all through the night, would throw up once a day (at any time) and needed to be on 2 liters of oxygen at all times.

The past month has been much better. Micah's more his old self now. He's back to eating nearly all his calories, not throwing up, no more shots, he's standing and trying to walk, sucking his paci and sleeping really well. He's learning so many new words (sign language). Just today he was asking for his "caterpillar" + "book" (who doesn't love the Very Hungry Caterpillar).

As good as he's been doing, we still acknowledge that he's got a long way to go and a third open heart surgery is the only way to get there. He's still on a lot of medications for his Pulmonary Hypertension. He's still on 2 liters of oxygen because he's only using one lung. When his shirt is off you can see how he has to really pull each breath with his right lung :\

We've really appreciated all the prayers and feel the love, over the past months. With this upcoming trip and surgery, there are so many unknowns. But because of this, Laura and I are in a unique position where we can choose to put our hope in God - and not material things like our home, our nearby friends and family. We trust that He will take care of Micah.

July 5: Check into the Ronald McDonald House
July 6: Pre-op appointment
July 7: CT angiogram & Meet with Dr. Hanley
July 11: (7th) Cardiac Catheterization
July 13: (3rd) Open Heart Surgery

Also, we have a local artist at Yellow Doors Studio, Steve, who drew this for Micah. Please like his work on Instagram.