Boston

Sorry, this is overdue....had the post finished but lost the whole thing! : (. I hope I remember all but this will likely be shorter than the last as I should be asleep.

After a long car trip with two preschoolers, we arrived in Boston on Thursday afternoon. the highlight of the trip was our Wednesday night stay with Zach and Brie in Philly! the lowlight( is that a word?) was getting a call from Boston Children's as we cross the George Washington Bridge in NYC that Shane's surgery would be delayed until Monday, Sept. 10th. "We hoped we'd catch you before you traveled." What? We were supposed to be in pre-op in 18 hours. Hmmm.

Pre-op was long. 7:30 until 3:30! It was well orchestrated, however, and everyone was so nice. Shane started with an EKG, pulse ox and vitals. Next was the chest X-ray and then off for an echocardiogram. That was a long one-- about an hour. Last was the blood work up. Then paper signing and visits with two doctors and a research assistant. About 2pm we left for lunch only to be called back to redo the blood work as the first was not good. Apparently the blood hemalized-- the cells burst which happens a good bit with children. Anyway, we were done at 3:30 and spent a while at the hospital playground at the end! Amazingly, Shane didn't cry at all!

This boy has come a long way since the days he blew up when he saw the blood pressure cuff!

The doctor report: All of the pre-op is about the heart cath on Tuesday. Yes, we might have to do more pre-op again late next week. I thought of that too! The cath's purpose is to map again Shane's heart. Also, they will check pulmonary pressure, blood flow, and actual O2 saturation levels. These will all be critical for surgery on Monday. This will determine if they are able to close the hole between Shane's ventricles the placement of the conduit (likely a cadaver valve) which will connect his right ventricle to the pulmonary arteries and what to do with the many collaterals he has that have oxygenated his blood up until now. During the cath, they may "occlude" some of these collaterals with a process much like stretching a slinky and inserting it in the collaterals and releasing it. This will stop blood flow in those vessels. the short term downside to that this is lower O2 levels until Monday's surgery...probably a bluer, less energetic boy. Also, an overnighter after cath. all good info and we feel well-informed! More to come on this after the cath! Please pray for best results on lung pressure and collateral occlusion. We will be looking at another trip back in about 6 months if the VSD( hole) cannot be closed : /. the valve will have to be replaced in 3 to 7 years based on Shane's growth and the valve deterioration. Once an adult size valve is in place, he should be good for a long time!

Saturday we went to the Children's Museum, rode the T( subway but Shane thinks it's a choo-choo (o:), saw the Tea Party replica, walked to Faniuel Hall, the market and finished up a fabulous playground and sandbox at the wharf. it was a fun day and very relaxing.

Sunday we visited the church we attended when we lived here and worshipped with great friends! Then we spent a nice afternoon with them sharing lunch and catching up on our families. then children had a blast playing outside--running and climbing. Olivia was in heaven as the Richards have a playhouse and a stash of jump ropes! anyone who knows our Olivia understands she loves to tie ropes, bungees, leashes anything of the sort to trees, slides, people( yikes)! She even spotted a rope coiled in the corner at church! Hence, her query for a "lasso" for her birthday?!?! It was such a wonderful day....

I stand amazed that my omniscient and loving Father knew better than me that we needed to come to Boston in 2000. We were diverted from a military assignment from DC to Boston and I was sure it was a plot of the enemy : ). However, the Lord knew we would make life-long friends. He also knew we would adopt a little boy who would need intricate heart surgery in Boston and long for the support of friends close by. Mostly, I believe, He took pleasure in bringing us joy as we caught a glimpse of His plan as it unfolded before us...a plan laid out long ago that proved His faithfulness yet again and displayed His desire to be seen in the details of our lives! What an awesome God!

"A man's heart plans his way, but the Lord directs his steps.". Proverbs 16:9

 

Shane & Livie with some of the Richard's children

Shane, Livie, and some of the Richard's precious family

 

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