Wednesday, September 26, 2012

Cleared to Go Home !!!

Our follow-up appointment was this afternoon. Chest X-ray, EKG, and pulse ox. Typical vitals and the all-important listen from Dr. Lang. He said Shane's lungs sound good--still a bit "juicy"--the diaphragm on his left side is still a bit elevated and somewhat stunned. Hopefully, over time that will correct; that causes some extra work on that side for breathing. No wheezing so we can back off on nebulizer treatments, no more steroids. Just continuing with the Lasix for fluid and baby aspirin. Shane still is not too energetic...that will come in time as swelling decreases and the effects of surgery wear off. I'll cut him some slack since he did have open heart surgery!

So Dr. Lang said, "What are you still doing here?"

Me: "Waiting on the ok to leave."

Dr. Lang: " Get the &$@# out of here! See you in 6-12 months."

As we were leaving the office, I told Shane that the doctor said we can go back home now. After a minute or two, he got a big grin on his face and did his happy dance. "...cited!" he said! so sweet...

******* Praising God for our great report!!*******

When we got back to the room I asked Shane to show me his "excited" face again...........



sorry about the shadows!


Friday, September 21, 2012

the Blessing of the House

The Yawkey
I'm sure Tom posted about this place earlier, but I had to re-emphasize what a blessing the Yawkey Family Inn has been to us. If one must be away from home, this is a wonderful place to be. This beautiful old Boston home has been carefully converted to accommodate families with medical needs. It has three stories plus a basement and about 38 rooms. All of the rooms are structured to accomodate families of all sizes from 2 to 8 guests, at least--- all spacious. Each floor has at least 3 bathrooms and several rooms have an on-suite---for those that medically need a bath in their room. I thought that sharing a bath would be awful, but honestly it has been fine--- just make sure you bring your room key ; ).

Lovely Detailing!
There is a common area with a very large playroom, a large sitting area, a reading room, and a HUGE, well-stocked eat-in kitchen. You are free to cook anytime... There is fridge and freezer space for each room and commercial washers and dryers for use as well. An elevator gives easy access to all areas of the house.

Loving on a memorial of Bert, a beloved therapy dog.
There are playgrounds, grocery and drug stores, local restaurants, the "T" stop, and hospitals located all within a half mile or so. Yet the home is on a lovely suburban.looking street.

What makes the house a home!
Volunteers come in often. Some come and prepare a meal for all of the residents. Sorority sisters arrive unexpectedly to bake some goodies. Others, like Amanda, a high school senior, comes on a regular basis to bake with the children. She came last night to help them make a " summer" cake--- celebrating the end of summer and arrival of fall. Still others have painted lovely artwork which is everywhere--- down the halls, in common rooms, and even in each suite. A young family with two small boys makes this their permanent home and manage this place---can you imagine the lessons their children are learning?

But, overwhelming, it is obvious that LOVE built this house. LOVE maintains it! And the residents? Well, let's just say that we become family! A community. I believe community in the way God intended all of us to live. Living beyond ourselves and serving others. Living in reliance on others God has brought along side of us in our life journey. Beautiful! Not necessarily perfect, mind you. But, beautiful!

Home is here...for now!

Thursday, September 20, 2012

Two Steps step back

September 19th is a day to celebrate! Shane has been our son for 6 months!!! And come so far during that time. However, we spent much of it in the ER :  /

The  first night out of the hospital was a restless one.  Shane just couldn't get comfortable. He seemed to breathing faster and harder.  By 4 am, I decided to give him a nebulizer treatment and so Shane decided it was time to get up, too.  Since we were going to have to move hotels, I thought it best to pack up everything...looked like we'd be going back over to the hospital for a check if the breathing didn't improve.  By 6:15' things clearly had not gotten better...maybe worse so off to the ER we went : (. A not-so-fun way to spend 7 hours!

As I expected would happen, Shane is back on steroids to reduce swelling in his airways and regular breathing treatments.  This would hopefully keep us out of being admitted.  Apparently, Shane has a "friction" rub--- there is a fancy word for it---but is heart and lungs rub slightly(due to swelling from surgery plus Shane has a by small chest cavity.  The friction produces fluid overtime as a reaction which Shane's new X-ray showed.  The breathing problem ( not related to the fluid) is still likely a post-surgical issue that will resolve overtime.  Separate issues but each causing rapid and labored respiration.  However, we have a schedule now---- 8,12,4,8,12,4 .  Neb treatments at all of them, Lasix, steroids and Motrin on the 8s, Baby Aspirin at night and another dose of Motrin somewhere in the middle.  The nighttime treatments are a bit rough but otherwise all is doable!

Happily this morning Shane was more like himself....still some breathing issues but not distress! Trusting things improve even by the hour!

Praying that swelling goes down quickly, fluid goes away and the airways open and adjust!  Our follow-up is Wednesday, September 26th. hoping we will get the "all clear" to go home.  We sure are missing home!

Tuesday, September 18, 2012


Yesterday we had another echo done and a lung scan. The echo was to find out how the new heart anatomy was functioning and the lung scan was to see how well the blood was flowing to the lungs and it's distribution.

The echo showed the new conduit from the right ventricle to the pulmonary arteries was functioning well! Even after three years of misuse, the pulmonary arteries seem to be functioning well also under their new structure. The right ventricle(RV) doesn't appear to be over-pressurized based on the fact that none of the valves show leakage and the area is not enlarged. The best gauge of RV pressure is doing a heart cath...which at this point isn't necessary to do again. The re-routing of collaterals (some have narrower paths) at this point doesn't seem to be a hindrance either as the heart function was good. If these had been too narrow for good function then Shane would have had another cath to expand those narrow places. A re-evaluation between 3 and 6 months will determine how soon that might need to be done. The VSD was patched closed, too, and still the RV is maintaining reasonable pressure...a small incision was put in between the right and left atria as a "pop-off" should the pressure get too great...this will protect the heart from overworking. A collateral to the lower portion of the left lung was " ligated" or cut as this part of the left lung ( and vessels to it)had been hit for so long time with high pressure and a repair to this area would have extended surgery a good bit with not much, if any, gain as the docs explained to us. the echo also showed that there was no fluid around the heart...a good thing! Praise the Lord!

Next was the lung scan. radioactive isotopes are injected into the bloodstream and then a scan is done of the lungs---front and back. a very quick procedure. Unfortunately, all of Shane's IVs had been pulled a couple of days before so he had to have another IV inserted just for this test. : /. The doctor came back a short time later to let us know that Shane's scan showed flow to the right lung was 55% and to the left was 45%. I must have looked bewildered because she followed that with " your right lung has 3 lobes and the left has 2 lobes. his lung function is like that of any normal set of lungs.". Wait. Did I hear her correctly? Normal lungs! Only God!!!

So with that wonderful report, we were discharged this afternoon. We will remain in the area for another 7-10 days with appointments next week to follow-up and appointments for the me when we rerun home. Shane will receive another EKG and chest X-ray to make sure everything is still looking good before we have the doctor's blessing to return home. Shane still sometimes breathes a bit rapidly and coarsely so we have a nebulizer to treat him. This is why he was on the steroids before. We don't know yet if these asthma-like symptoms are residual from surgery or something new. Could be he has twitchy lungs like his oldest brother, Zachary.

Shane will remain on Lasix for any fluid retention and a daily baby aspirin. Tylenol and Motrin as needed for any pain. The nebulizer as needed to help with breathing by relaxing the airways.

Our prayer requests at this time should the Lord place Shane on your heart are:

1. The healing to continue on steadily

2. No fevers, etc. that could send us back to the hospital

3. Supernatural protection of the surgical site--- He is a an active 3 year-old boy!

4. For his lungs/breathing to settle down--- airways to stay open and NO wheezing

5. Now that we are not under the ever-watchful eye of nurses and docs, for me to be attentive but not overly concerned : ) !


Thank you once again, dear friends and family, for all of your prayers and words of encouragement!!! Please rejoice with us as we give thanks to the Father for his faithfulness and mighty work in Shane's life! We believe it is miraculous!


Celebrating!! This was the beginning of our discharge party.....Decaf Pumpkin Spice Latte...Oh yeah!...


...followed by pork dumplings, raspberries, strawberries, watermelon and a chocolate brownie! yum!


"All the nations you have made

will come and worship before you, Lord

they will bring glory to your name.
For you are great and do marvelous deeds;
you alone are God.

Teach me your way, Lord,
that I may rely on your faithfulness;
give me an undivided heart,
that I may fear your name."

Psalm 86:9-11


Monday, September 17, 2012

Rough Day....for Mom and Dad

Actually, Shane has been doing great. He's making steady progress which is great! His lungs continue to improve and clear.


learning about the woman who gave money and insisted that this area be a resting place for patients and families and not a parking lot way back in the 60's.

We made a trip out to the Prouty Garden in the center of the hospital. It was a beautiful day! However, Shane was out of sorts and upon re-entering the hospital he lost it! He wanted to go home! Well, there is no explaining that to a three year old. So we came back and calmed a bit and got out his train set. Fine as long as the train didn't fall off the track....well that only happened about every 5 seconds so...again meltdowns. Finally back in the bed for some Elmo! That always helps...except if you want to re-watch a part that you cannot convey to mom. Hmmmm. Another meltdown...nurses coming in to see what is wrong and wondering why I'm letting him fuss. Hmmmm. Maybe because it's a tantrum?!? They chalk it up to pain. Granted he did have OHS but this was not pain. Amazingly, he has rarely ever seemed in pain. But okay, give him some meds. Do they have some for tantrums? Then, we are settled for a nap. I knew that would certainly be a good thing. As he was just dozing off, Oops, time for a nebulizer treatment. Shane slept through that 10 minutes but woke when removing the mask. Another scream feat. Dinner didn't even help much. We played in the floor for a bit and then back in the bed. He would certainly be ready to sleep by 7:30....I, uh I mean, he was exhausted! He managed to fight off sleep until 9:30! Whew! One nurse said the steroids can make them irritable. So I hoped it would get better once those were finished. Of course his doctor dashed my hopes saying prolonged use of steroids can do that but not likely for a few days. Hmmmm. In all fairness, I think a lot of Shane's disposition...besides any the fact that the family unit is fractured at this point! all the time he chants "Daddy home", "Livi home", "Lauren home", "...ginia".(Virginia). He really wants to be home!

enjoying the beauty and sunshine!

And then on the home front...Tom tucked Olivia in bed last night and she proceeded to tell him that she didn't love him because he wouldn't let het do what she wanted to do. After talking with her, she told him she "would change her mind tomorrow". Poor Daddy! I told him that has happened to me many times : (. Sadly, that little girl knows exactly how to hurt!

As I fell to sleep last night, I whispered a prayer for Olivia to have a heart of flesh, that the Lord would help us as we parent these two little people and give us wisdom for the task! Want to know what my devotion was this morning? The Lord gave me a blatant reminder of His purpose in our adopting!


“You received the Spirit of adoption.” Ro 8:15 NKJV

The Bible says, “[We] received the Spirit of adoption by whom we cry out, ‘Abba, Father.’ The Spirit Himself bears witness with our spirit that we are children of God, and if children, then heirs—heirs of God and joint heirs with Christ” (vv.15-17 NKJV). Adoptive parents understand what it’s like to have an emptiness in their hearts, to search, to set out on a mission, to take responsibility for a child with a troubled past and an uncertain future. And that’s what God did for you. Knowing full well the trouble you’d be, and what it would cost, He sought you, found you, paid the price for you, took you home, gave you His name and the right to call Him “Abba,” which means “Daddy,” a term of endearment. Adoption isn’t something you earn, it’s a gift you receive. You’d never hear adoptive parents say, “We’d like to adopt little Mary but first we want to know—does she have a house, money for tuition, a ride to school in the morning and clothes to wear every day?” The adoption agency would say, “Hold on, you’re not adopting her because of what she has, but because of what she needs. She needs love, hope, a home and a future.” You don’t earn the Spirit of adoption, you receive it by faith. That’s important, because if you can’t gain it by your stellar efforts, you can’t lose it through your poor performance. How reassuring! And it gets better; you’re an “heir” to all your Father owns. That means you’ll never have a need He cannot or will not meet. How good is that?

(emphasis mine!)

<Devotional originally written by Word For You Today. For all inquiries, please visit>


Thank you, Lord, for the reminder of all you have done for me...even when---especially when---I show "poor performance"!

He insisted on holding my hand as he finally fell to sleep! There is a message there, too, isn't there, Lord?


Saturday, September 15, 2012

Much Better Day

Today was almost a 180 for Shane compared to yesterday. We certainly feel all of the prayers as we've witnessed the healing hand of God in our son's life! Praise the Lord!

Shane woke up about 8:45 this morning after a rough evening. However, our amazing nurse, Jess, made sure we both got a great night's sleep! She has so many little tricks to make Shane feel comfortable and at ease here AND she brings me hot tea and asks how I'm doing! I've learned a great lesson in servanthood!

Jess, Shane's awesome nurse, letting him listen to her heart!
Shane only has his O2 and leads to the heart monitor left. His wires to his heart were removed this afternoon and also his last IV! Yay! He is down to 1/2 liter on the oxygen and even went without it for about an hour this evening...he stayed around 91 with some dropping into the 80s. Still very good! He chowed down today and ... TMI alert... asked to go potty 4 times...poopy! I think he calculated how many days he needed to make up for...that would be my "regular" little guy. : ) AND a very important box to check for discharge! He will continue to be weaned off O2 and Monday will have an echo (at least). Hopefully, by then we'll have an Idea of our Boston timeline.

Playing with his train set!

"What shall I return to the Lord
for all his goodness to me?

I will lift up the cup of salvation
and call on the name of the Lord."


Psalm 116:12-13



Friday, September 14, 2012


Couldn't get this last pic to post...


Challenging Day

Shane woke up breathing better and with a smile. we started the day with chest X-ray , EKG and blood work( which I might add he did not cry). All looked good even the xray which showed improvement in his "stunned diaphragm. Though his eating wasn't that great, as the day progressed, he became punky and breathing was harder. Even after napping, no improvement with his demeanor or eating. He didn't talk much and still seemed to have trouble breathing. earning off O2 was stopped and ramped back up.

By late afternoon, Shane clearly was having trouble breathing and could not get comfortable. He was now wheezing a good bit. So the doctors devised a plan of nebulizer treatments and doses of steroids to decrease the airway swelling to bring him relief. About 9:30 pm, Shane was feeling better, talking a little, eating some strawberries, and even helping hold the nebulizer...the same one he screamed with only a short time before. Finally he settled down to sleep. He sounds some better but still a ways to go. Praying the lungs respond and then we can move on to healing and weaning from O2.

Also today Tom and Olivia traveled back one so Shane and I are a solo team now. We are really missing them. That is hard!


The bright spot in our rough day was the arrival of a Balloon Bouquet from Tom's co-workers! Shane was very excited. I know he will have so much fun with them as he begins to feel more like playing! thanks to everyone for the kind thoughts, prayers and words of encouragement! I cannot begin to tell you how very much it means to our family : ) We are blessed!




Thursday, September 13, 2012

Chest Tubes & All But One IV--Starting to Look Normal

Last night was a rough night for Shane...not sure Shane or Susie got much rest. I apologize for I really don't have the details. I finally got Susie to take a break @ 11 am this morning and we barely got to speak for 2 mins. The nurses were about to take out his two chest tubes and I needed to get in the room before it started. Since Shane is still assigned to the CICU, we are only allowed 2 visitors to the room including Olivia. Unfortunately, that means Susie and I have never been in the room with Shane at the same time. That will change once he is finally moved to a regular hospital room. Susie and Olivia headed out for some food and fun outside of the Hospital. Hanging out in the waiting room is no place for a 4 year old.


Shane watching Elmo
As for Shane, he looks good. Still laboring some to breath so when he sleeps they pump up the oxygen. Susie said that they also stuck a tube down his throat twice to help clear some of the junk in his lungs...he is still congested. I did observe the chest tube removal. First they gave him some pain medicine followed by the both tubes being pulled out together very quickly. The nurses said that we should see his comfort level increase as the day goes forward. These tubes reach from his tummy almost to his shoulders and apparently are very uncomfortable and can interfere with their breathing. His came out easy. He is talking some....for me it mostly asking for Susie and Olivia. Fortunately he did not cry for her like her usually does--I believe the meds were the big factor. After the removal I gave him a toy and turned on his favorite show--Elmo. The IPAD is a wonderful media tool. By the end of the show he was ready for a nap and I took the opportunity to BLOG.

God is so is amazing how quickly a heart patient can recover after so much trauma. Thank you for your prayers and notes of encouragement.


First Full Day Toward Recovery in the Cardiac ICU

I apologize for the late has a been a busy day and we are still recovering from the emotional drain of waiting through Shane's surgery. Last night we left Shane in the wonderful hands of the Boston Children's Hospital Cardiac ICU team at about 7:30 pm, grabbed some takeout, walked back to the Yawkey House, shared our meal picnic style on our bed with our daughter Olivia while watching a quick 15 min Elouise cartoon. Then we all promptly passed out both emotionally and physically. Our doctor and the CICU nurse both emphasized that Shane was heavily sedated and would be kept asleep till mid morning or later. They had encourage us to go back and get a good night's rest because when he awakes he will need our full attention. After the good report on the surgery and encouragement to get some rest, we were all able to sleep peacefully.


This morning, we returned to check on Shane at about 8:30-- he had done well throughout the night and they had started to slowly allow him to breath without assistance. Once he was breathing completely on his own they were going to Ex tubate him--take out his throat tube. The CICU staff encouraged us to get some food and they would call us when they were going to start waking him. At 12:15 pm they Ex Tubated him. From that point he was very groggy and struggling to stay awake. He appeared to be in a lot of pain but he was given some morphine-- it appeared to help and also make him sleepy. When he was awake he would only say a few words...asking for apple juice and mommy. The nurse was slowly allowing him to drink throughout the day. I watched him knock-out a 6 oz can in about 1 min. It was obvious he was ready to drink a lot more than they were letting him. The rest of our day was taking turns standing with him--bed is high and chair is low. However, even when he was sleeping he would latch on to your fingers and squeeze it-- it appeared to comfort him. Although he looks less like someone asimulated by the Borg today, he still has many wires, tubes, and monitors connected. He still has two large drainage tubes that come out of his chest near his heart as well as an IV in his neck and arm. The tubes will be removed once he is breathing well on his own. Currently, he is congested which is a common side effect from the breathing tube. They have been trying to get him to cough it up...but who in there right mind would want to cough after having your chest split open?However, this is the next critical step....they need the congestion to clear and breathing normalize before they remove the tubes. Once the tubes are removed then they can consider moving him out of the CICU.

The wonderful prayer quilt sent to Shane from Northside Presbyterian Church

So please continue to prayer for his quick recoverers and specifically for the congestion. It is so marvelous to think that in March this year we were in China bringing Shane home. We knew Heart Surgery needed to happen quickly for this little is just amazing how God has opened the doors and cleared the obstacles for his surgery to happen so soon and by such a fantastic medical team.


Susie is staying the night with Shane. From now on she will be staying with him until he is discharged. We were told to expect to stay in the hospital 5-7 days with a 5-7 day out patient in the local Boston area before allowing us to bring him back to VA. I will stay till Fri to ensure Shane is stable and on the road to healing as well as ensure Susie has what she needs. Olivia, our 4.5 yr old, and I will travel home and return once we know Shane is ready to come home. Susie and Shane will move back into the Yawkey Family House once he is discharged.

We received a wonderful gift today....a prayer quilt from Northside Presbyterian Church, Blacksburg, VA. This is the church that my wonderful sister- in-law Linda pastors. The quilt is beautiful and Shane will get much enjoyment and comfort from it. It is getting late....God Bless you all


Tuesday, September 11, 2012

Success--Shane is out of Surgery and in Recovery

@ 3:30 pm notified that they had taken Shane off the Heart-Lung Machine and they were finishing up the surgery.

@ 4:15 pm we met with Dr Pigula...he is very happy with the surgery...they fully closed the VSD- hole between the ventricles. Conduit in place with valve and the collaterals relocated. Pulmonary pressure was acceptable. We thought of a lot of questions but decided to give the Doctor a rest until tomorrow...he looked tired but encouraged by the results of his and his team's work. It also helps when God is on your team.

@ 5:20 pm, Susie allowed to go back to Cardiac ICU to see Shane. Olivia and I get to wait back in the family room--only 2 people allowed to visit including children. So we wait as she entertains a 3 year old boy with the play toys...she definitely has a gift of befriending other children.

Thank you all for all your prayers....we have witnessed God's amazing grace and mercy. We serve a mighty God and we see his finger prints all over the details of this amazing journey for Shane and the rest of our family. We will update you as we have additional details. For now we expect Shane to stay in the Hospital 5 to 7 days followed by 5 to 7 days out patient before we return to Chesapeake.

These are not pictures for the faint of heart. Shane is in very capable hands...many doctors and nurses are carefully monitoring him. However, the next 24 hours are very critical! Please continue to pray: specifically that Shane's systems stabilize, that his heart rate will fall more toward the normal range, that the bleeding(which is normal post op) will cease, that his heart also adjusts with no arrhythmia, and that he feels the presence of the Lord all around!


Thank you again for lifting our little boy up before the Lord!


Surgery Update

10:35 am: Incision was made

11;00 am: attached to the Heart/ Lung machine

1:00 pm. All is well and halfway through the repair. : o )


"Surely God is my help;
the Lord is the one who sustains me.". Psalm 54:4

Today is the Day-- Shane is in Surgery

When we woke this morning, I knew this would be definitely be the day. It was different from yesterday...a knowing deep down. Tom , Olivia, and I just kissed Shane and hugged him as the nurse carried him back to the OR. He was happy this morning and cuddly! Thank you all so much for all of the prays and encouragement e have received! God has been very gracious to us through this whole process.

Our scripture and devotion for today is "Be strong and of good courage." Deuteronomy 31:6

Shane Feeling Pretty Loopy

Monday, September 10, 2012

Postponed Again--now we show-up on Tues @ 7 am

Well it has been a long day. We showed up at 10 am as planned. From there we went into a series of delays. Finally at 4 pm today we were told that our surgeon was still in surgery with the first operation of the day? Therefore we are now the first surgery of the day for tomorrow with a showtime of 7 am. It was a little frustrating...Shane had not had any food since 9 pm last night. He actually handled it very well. We were at least able to get them to give us some clear fluids (juice) to keep him comfortable. We are now back out the Yawkey Family House tanking Shane up for tomorrow. All your prayers are greatly appreciated. Hopefully, the surgeons will be rested and ready for Shane tomorrow.

Another Delay : /

We showed up at 10 and waited an hour only to be told they would not be ready for Shane until about 2 pm..... At least we have an hour reprieve to fill him up with juice!  Praying that Shane stays distracted from food and the juice is good enough for now.  Also praying the other case finishes quickly and they might take Shane earlier than expected.  We do, however, want a doctor who is not tired!  Let you know with an update later!  Thank you for your prayers!

Sunday, September 9, 2012

Surgery Update

With less than 12 hours until show time, we have been bumped again a few hours later. : ( Not sure the exact time of surgery, but we have a new show time of 10 am. Even though it's frustrating, there are children and newborns that have immediate life-threatening needs that take priority. We are grateful Shane is not that critical. Our immediate prayer request for Monday morning will be that Shane will be easily distracted from the desire for food and drink--- nothing to drink or eat upon waking and he is usually wanting both rather quickly! Thank you for remembering him before the Father tomorrow!

Apple Picking at Parlee Farms

We enjoyed a Saturday morning at the farms picking apples, playing in the hay maze, tractor rides, petting the animals, and eating apples and cider donuts. All with friends....





Curious George

When visiting the Natural History museum in Harvard Square, we stumbled upon the " World's Only Curious George Store" . It was our shelter from the an unexpected torrential rain storm hit while we were there. A great place to be stuck for kids young and old : )




Fun Friends and New England

During our free time around appointments and heart cath, we were able to have some delightful moments with friends and seeing some of the local sights! here a few pictures...