Pre Op and Surgery Time

Friday we went through a shorter version of last week's pre-op. We were able to sit down with several different doctors including Dr. Lang, Shane's cardiac case manager, and his surgeon, Dr. Pigulla. We are still hearing encouraging things with respect to his anatomy which is good! Dr. Lang mentioned that the initial report they saw for Shane was not encouraging----Chinese orphan, no intervention with the defects he presented; it often means a difficult repair(if repairable) with unpredictable outcomes. Does this mean it will be easy? No but more straightforward perhaps. and with the data that they have gathered, at least, the doctors feel as knowledgeable as they can be before heading into surgery .

Shane has a show time of 6 am on Monday and approximate start time of 7:30. We were told to expect the surgery to last 5-6 hours and then close monitoring for 2 hours before we see him. We were warned that Shane will have much "help" afterward. He will have a ventilator, possible help keeping the heart beating, many tubes and wires. He will be kept asleep at least 24 hours as his body adjusts and settles.

If all goes well, Shane will be hospitalized for 5-7 days and staying local for another week. That would be wonderful! Up until now, I've tried to separate my feelings from this whole procedure! It is hard to think of the intricate work these medical folks will be doing on our little boy and yet we are at peace knowing he needs this and this is the time and place God has ordained to begin his healing! We just are ready to get it done!

Thank you for your continued prayers for Shane and his doctors!

and a BIG thank you to the S family for caring for our home and especially our sweet Lauren! We miss you, Lauren! Hugs and kisses!

 

Posted with Blogsy

He Sees It All

While we wait for Shane's surgery, we are staying at a lovely old Boston home that has been converted into a "home away from home" for families needing local medical care. It is a beautiful place. Much thought has gone into making this place special. Once inside though one finds what truly makes this place special...the families that reside here.  As we have come to know them we see their deep love and sacrifice for their little ones. As we await Shane's heart surgery on Monday, I cannot help but feel that compared to us, many of these families are carrying much heavier longterm burdens. Please hold them up in prayer...

a 6 month old is having strokes...wisdom is needed
a one year old and his 3 week old sibling have a very rare blood disorder...a medical breakthrough
a 14 y/o here for a year needs kidneys...intervention and strength
a family from Europe has been here almost 5 months...strength
an 11 y/o needs an experimental drug to help her swallow normally and is here every 6 weeks...a miracle
a 6 y/o having her 13th operation...stamina and grace

All need hope!

the list goes on....you understand what I 'm saying?
These families sacrifice everyday for the sake of their little ones. This is love!  Yes, pray!
Pray that Tom and I will be the eyes,ears,hands,and feet of Jesus here. As I know we are here for such a time as this...for Shane...for whatever the Lord wants of us!

Let those that sow in tears, reap with songs of joy!

Encouraged

Yesterday at 8:40 as the "happy juice" took effect, Shane was feeling sleepy and comfortable. he was carried back for his cath. Pretty quickly we received a call that he was settled with two IVs in his right arm and the cath inserted at the right, and he was doing great. Nurse Cindy called at 9:40 and 10:30 to say things were still well and the docs were get plenty of great pictures of his anatomy!

My devotion for the day was based on 1 John 5:4. "This is the victory that has overcome the world, even our faith." I needed that! Not that my faith is so great. Ha! However, my God is. That I have learned through experience--He is faithful. Not that every circumstance turns out as we hope but the knowledge that He is with us through them all---never leaving or forsaking us. This is the faith that sustains us! This is what gives us the courage to live---the deep and abiding trust in One that never fails. He is the One that pushes back our enemies...through His name our foes are trampled...He has given us authority to overcome the enemies power. Nothing...nothing can separate us from Christ's love. the hardships, danger, trouble...everything the enemy throws at us! Why? Because He has shown over and over in my life that He is indeed faithful! I needed that reminder as our day began--- I need it each day!

We met with Dr. Lang about 11:45 to talk results---the doctors were encouraged by what they saw and so were we! The placing of the conduit or valve connection from the right ventricle to the pulmonary arteries appeared like it would be a very straight forward procedure. None of the collaterals had to be occluded as they look to be useable(yay!). The set up of the plumbing to the lungs will be the challenging part of the surgery on Monday. The right lung is in pretty good shape---the collaterals had narrowed considerably before reaching their connections either at the pulmonary artery towards the top and towards the bottom of the right lung. There is one large collateral branching off of the aorta(the one that leads to the lower right lung) that will be "detached" and rerouted. Pressures in that right lung are good. Great news!

Now the left lung is not quite as good. The collaterals remained much wider as they reached the left side. In fact the lower left lobe(about 1/4 of the lung) has been blasted for so long with high volumes of blood and no repair, is pretty useless. However, blood flow to the upper portion collaterals can be corrected. Ideally, one wants every bit of both lungs useable but the amount of time it would take to repair the lower left will not likely yield much gain against the risk of prolonging the surgery. Docs will decide once in there what, if anything, can be done in that area. They were thrilled that Shane's O2 levels were true at the mid 80s and the overall pressure was not too high so looks like--hopefully!-- the VSD can be completely closed as well. Again all of this comes with the disclaimer that everything will be done as seems best in surgery.

We are so encouraged : ) and to see the docs encouraged as well makes it all the sweeter!

Shane is doing well this morning. I was a bit nervous and kept checking the cath site and temp last night. One scare happened post-op that made me overly cautious. I had just come back to his room after the cath and rubbing his legs and trying to make sure he didn't move too much. He was still very groggy. The nurse had stepped out of the room and for whatever reason, I took a look at his cath cite. the room was very dim but something didn't look right. the bandage appeared dark and puffy and I realized it was quickly filling with blood. I poked my fingers down for pressure with one hand and pressed the help button with the other. Nurses came running and blood was everywhere. The site had started bleeding again--very common in the first hour or so. Enough to put me on my guard though! Thank you, Jesus!

Next few days will be quiet with pre-op again on Friday for Monday's operation. We'll meet with Dr. Pigulla to hear his plan and details of the surgery and may know more.

Thank you once again for all of your prayers. We feel them! I took pictures, but the light wasn't right so they didn't come out. : ( Sorry. I still need practice taking pics with the IPad.

 

Posted with Blogsy

Heart Cath Day

Just quick update. Shane is currently receiving his heart catheterization. The staff was wonderful at making Shane and the rest of the family feel very comfortable and at ease. The morning started early with us needing to be at the hospital at 7 am. Since we were staying at the Yawkey House, we needed to walk about 1/2 mile to the hospital. We woke up to rain but thankfully it had cleared by the time we had to leave. It was clear that Shane had no idea what was about to happen and showed no fear throughout the prep process. He was in great spirits for a child who usually wakes up slow and really doesn't interact well for the first hour of the morning. Susie says that Olivia wakes up saying "hello world, here I am" where as Shane wake ups saying "where's the coffee?" Today was pretty amazing in his response to the hospital staff....he has come a long way in his trust and fear issues with medical staff in just a short few months. The surgical staff continues to amaze us with their compassion and ability to work with children. Our anesthetist, Dr. Hickey, is also Chief of anesthesiology for the hospital. He said that he had work with performing heart surgery for children in Shanghai with Project Hope (1985-1994) and also helped design the current children's hospital in Shanghai. He said he has expertise is having five children of his own! Ha! Dr. Hickey loves what he does and said it is a privilege to help bring healing to little ones! : ). What a privilege for us to meet the wonderful staff who bring healing everyday to many!

Shane dress for his procedure

Shane and Livie blow bubbles while we wait to get started--the staff are wonderful

We are now in the wait mode...it should take about 2 hours. The team is hoping to not only scope out and test his heart, but also close off some of the collateral arteries that his body has produced to overcome not having a traditional pulmonary artery to his heart. This is some of the prep work they would like to accomplish prior to his heart surgery next Monday.

10:30 am. We just heard from the nurse....he is doing great...they are taking tons of pictures...we are expecting another call in an hour for the next update.

 

Thank you for your prayers

 

Posted with Blogsy

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

 

Posted with Blogsy

T minus 2 weeks....

In less than two weeks, our little guy will have open heart surgery.  Looking at him it is hard to believe he really needs it.  However, I see it when he gets winded and asks to be held.  Or the bluish lips after he's been playing hard. The obvious gray cast of his skin when he is next to Olivia. Or the interesting sound and feel of his little heartbeat.  I know it must be.  I'm grateful it CAN be.  It's just hard and will get harder as the day quickly approaches.  Our immediate prayer is for continued health throughout pre-op testing and up to surgery so it will not be delayed...

"Whom have I in heaven but you? 
    And earth has nothing I desire besides you. 
    

My flesh and my heart may fail,

     but God is the strength of my heart
    and my portion forever."

                                                   Psalm 73:25-26

Dental Visit

Wish I had taken a picture but no!  Shane and Olivia had a dental visit...Shane's first.  Dr. B is amazing and so wonderful with children taking time with them.  He seems like he really loves his job!

Anyway, Shane just got a "look and see".  Possible braces later...normal.   Grayish teeth...not normal.  Most likely lots of antibiotics and other meds in China.  Of course, China only hinted at that but I'm thinking they might give that sort of stuff liberally.

On to the Olivia quote of the day.

Dr. B:  "Olivia, you have a small cavity."
Olivia: "Where?"
Dr. B:  "See this dark spot between these two molars? It's small."
Olivia:   ( woefully looking over at me) " I guess I missed a spot."  ; o )