Day 2 Post-Op

Koalton had a really good (and very busy!) 2nd day post-op!  We had some tears (still so hard to transition out of and into bed!) but MORE laughs and smiles, so that's the best! We started the day with a chest x-ray, which he walked to the elevators for, and then strolled down stairs with dad. When they returned, Koal got on the bike from the play room and rode and rode and rode!! He rode laps around the floor, then we got to go out to the hospital garden and ride some more!  He rested after lunch for a few hours (yes, he rode and played for hours this morning!), and then got up to ride more and have some fun in the playroom.  We played Cootie and bowled and played with cars and their race track...we even played with a kitty keyboard for a bit.  Then, he rode some more! By evening he was exhausted, and I think the day was beginning to catch up with him.  He watched some cartoons and was pretty weepy about "feeling itchy" (probably from Fruit Loop crumbs from earlier in the day!) and a bit agitated and wanting to go home.  Poor little buddy.  Please pray that tonight is an incredibly RESTFUL night for him, so that tomorrow's tests and activities go well.  Another x-ray and lung scan are scheduled, and he'll also have an echo to make sure all is well with his heart after the surgery. Pray that those results are excellent and insightful for our team here.  Please pray also that Koalton's pain will resolve itself and that his fear of moving in and out of bed and trying to use the bathroom would subside. He is being SO strong and so brave, and I just want him to be able to feel safe and content and patient as he continues to heal.

Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind

Psalm 107:15

Day 1 Post-Op #2

Not much new to report tonight...which is great! We got all settled in to 8 East the cardiac floor here at Boston Children's Hospital. Koal rested well most of the afternoon and got up a couple times to go to the bathroom. Pain management is still a top priority for our little guy and for the most part he's had a really good day. Getting up to get out of bed is pretty hard on him (think broken sternum and chest tube holes!) and he has gotten quite worked up leading into that a couple times. Please pray that God would calm his fears and give him strength to do the hard stuff we know can hurt a little bit. Pray for wisdom for the doctors, nurses and me and Adam as we help him with his pain and meds that combat that for him. Pray that tomorrow could be a great day of rest and fun, being able to easily get up and walk around the floor to the playroom and the outside garden.

It's hard to watch our sweet baby hurt...we are SO thankful for such an amazing medical team here that knows just what to do to ease his pain and promote steady recovery. I thank God every day for modern medicine and how He miraculously uses that to give Koalton a future with us. We pray that He is glorified through all of this.

Day 1 Post-Op #1

A sweet smile! 

We've had such a big day already! After an early morning x-ray, Koalton moved to a chair to sit up and watch some cartoons. Then he got to take a short walk down the hall to find a toy in the toy chest! He ate a little breakfast and we played a few games of Candy Land as well.  He kicked my butt all three times...I think he was cheating! Haha!

After some games and some time with the iPad, the nurses removed his chest tubes and he had another x-ray.  The chest tube removal is so hard to watch, as it's so painful for the patient and even a bit gory if you're squeamish. He seems to be feeling better now after a dose of pain meds and a good nap, and our sweet nurse assured me he won't remember a thing about the removal.

Around noon we got to move to the regular cardiac floor!!!! (Again, when the expectation is that you'll stay in ICU 3-4 days, moving the morning after surgery is AMAZING!) And, a HUGE bonus is that we're in a private room (there are only 2 on the entire floor). Yaaahooooo!

Nurses and doctors alike think that Koal is doing fantastic, and over the next few days he'll have more blood work, x-rays and an echo to monitor continued healing.

Koal is resting now, and I'll update again tonight. THANK YOU, as always, for all your thoughts and prayers.  We feel God's presence in such incredible ways, and His mercies are amazingly abundant!!

Surgery Day Update #4

He's extubated! They took Koalton's breathing tube out about an hour ago and he is doing absolutely fantastic! His numbers are stable, all labs look good, and hopefully he can rest for a while tonight.  There's talk of taking our more lines early tomorrow morning and getting ready to get him out of bed to walk around. We expected Koal to be intubated for a few days, so having the breathing tube out is amazing! These kiddos really do bounce back SO fast.

Thank you, again, for all your continued prayers for our little guy.  He is doing so well, and we continue to pray for an uneventful and quick recovery.  Please pray for peace and contentment for sweet Koal over the next few days as well.  It's hard for a 5 year old to fully understand all that's happened, what all the tubes are for, and why he's got strange new pains all over his body.  It's so hard to watch your baby hurt and know there's nothing you can do. He's been such a trooper so far, and we're so thankful to be in the nation's #1 children's hospital where they will likely have many tricks up their sleeves to keep him comfortable, distracted and entertained. Please also pray for a restful night for all of us, as it has been a very LONG day.

We praise God tonight for His sweet mercy and gracious answer to so many prayers.  We thank Him as well for each of you and all of your thoughts and prayers.

One more...drowsy and startled, but awake!

Surgery Day Update #3

Dr. del Nido came to speak with us around 2:30pm just after he finished with Koal's surgery.  He explained that all went well, and he was very happy with the procedure.  Along with replacing the conduit with one two sizes bigger, he repaired the baffle and opened and patched a pulmonary vein that had become too narrow due to scar tissue. He believes this surgery should keep him doing great with excellent heart function for a very long time! For now, Koal is resting comfortably in the Cardiac ICU. Nurses and docs have all said his numbers and output look great and they hope to extubate him overnight or tomorrow morning. With the breathing tube out, he'll wake up more and eventually more tubes and wires will also be removed. Please continue to pray for our little man as these next 24 hours are critical.

I am overwhelmed by the support and encouragement we have been shown today!!  THANK YOU for your calls, texts, and FB messages.  We have felt so loved and held close through all of this. You really are the hands and feet of God and we are so thankful for how you've allowed Him to use you to bless us.

So many tubes and machines!

 Give thanks to the LORD, for he is good; his love endures forever. 

 1 Chronicles 16:34

Surgery Day Update #2

11:25AM (EST): Our nurse liason just came to let us know they've just placed Koalton on bypass. Things seem to be going as planned. We'll continue to update as we know more.

Surgery Day Update #1

Koal was taken back to surgery around 8:40AM and we just received our first report that all is going well and they've made the first incision. Thank you for your continued prayers, support and encouragement!

Surgery tomorrow!

We had some final pre-op appointments this morning and met with Koal's surgeon, Dr. del Nido.  He explained the procedure and answered our questions and we are feeling as good as possible about tomorrow's surgery. We are to arrive at the hospital at 7AM and Koalton's surgery is the first case of the day.  After he gets settled and the awesome anesthesia docs get him medicated and set up, surgery itself will start around 8:30AM (EST). The procedure will take about 5-6 hours, but thankfully doc says it shouldn't be a complicated as Koal's previous surgery. Blood and vessels don't have to be rerouted, making things easier as far as the surgery goes, and hopefully easier for recovery.

Here are some ways to pray tomorrow:

*For God's hand to comfort and protect Koalton's tomorrow and in the days to come.

*For Koal's health and safety during the surgery.

*For Dr. del Nido, Koalton's surgeon, and his team in the operating room.

*For Dr. Powell, Koal's cardiologist, and his team who will care for Koal after surgery.

*For Koal (and Adam and I) to feel peace and contentment before, during and after the procedure. (It is not an easy thing to hand over your baby, pryaing God will use this surgeon and this procedure to save his life.) 

*For surgery to be a complete success with no complications.

*For quick and uneventful recovery (10-15 days in the hospital)

Thank you...thank you...thank you. I can't say it enough! Your prayers and encouragement are such an incredible blessing to us.  We will update here and on Facebook throughout the day tomorrow.

U.S.S. Constitution

Today provided another full day away from the hospital so we went to see "Old Ironsides" at Navy Pier. The U.S.S. Constitution was amazing, as was the museum along side it. It was a lovely day to be tourists and not have to worry about medical procedures or appointments.  Tomorrow we have a pre-op appointment and a meeting with Koal's surgeon, Pedro del Nido.  Please pray for those appointment to go well and for God to give us wisdom and peace about all that is to come Tuesday with Koal's surgery. Here are a few more pictures from today:

U.S.S. Constitution

An amazing ship! 

We ended the day with ice cream!

Just a quick update to let you know Koal was discharged from the hospital this morning after a pretty uneventful night. He slept as well as possible as far as hospital sleeping goes, and he's been in great spirits all day. After a slow morning and a short walk to lunch, we rested a little, played in the playroom at the Yawkey house, went bowling and had dinner and ice cream for dessert. He's resting now and we're looking forward to one more day away from the hospital tomorrow.

Thanks for your continued prayers!!

Cath day

Hanging out before the cath

We arrived at the hospital just before 9:30 AM for Koalton's heart catheterization procedure.  They gave him some "magic juice" again to make him sleepy and to help him forget the "getting sleepy" time of us leaving, administration of anesthesia, etc. His cath procedure started around 11AM and by noon we had heard from our nurse saying that everything was going well.  Just before 2pm they had finished the procedure and we talked with both the cardiologist who performed the cath, as well as our card, Dr. Powell.  No new information was discovered with the cath, but it did confirm pressures around the heart, narrowing of Koal's conduit and partial baffle obstruction.  We were also able to see some mild narrowing of the left branch of his pulmonary artery, which is what is causing the blood flow to the left lung to be less than that of the right.  This narrowing will also be something our surgeon, Dr. del Nido will address during surgery.  Koal woke up slowly this afternoon and had some funny things to say about his socks being swimming pools and someone haunting a castle. Hahahahaha...again with the drugs and the kids and the hilariousness!  ANYWAY, after a popsicle and becoming a little more alert, he was transferred up to the 8th floor where we'll spend the night. He's been mostly in good spirits, and is now sleeping (hopefully) the entire night away! He was a little sad about having to spend the night, and he can get quite irritated with the IVs he has in, but all in all, he's tolerating things pretty well. Dr. del Nido will review all findings this weekend and we will meet with him on Monday with surgery still scheduled for Tuesday.  We should be out of here (for a few days!) tomorrow morning sometime, and I  know that make a sweet little boy VERY happy :)

Feeling good post popsicle! 

Thank you all for your continued prayers and support. We are so blessed and so thankful for each of you!

Thankful

A day away from the hospital was fantastic! We were able to sleep in a bit, have a late breakfast/early lunch and hang out at the New England Aquarium for the afternoon.  Koal and I (Kerry) also went to see Finding Dory tonight.  It was a great day of rest from tests and doctors and the hospital, etc!

Koal and the penguins

Checking out the seals at the aquarium!

Tonight we're feeling so very thankful for so many things. First, I am of course thankful for a great day of fun away from the hospital. I'm thankful Koal was able to enjoy time in Boston and hoping he was able to take his mind off surgery for a bit!

I'm also thankful for our sweet family.  Auvy is being an absolute angel so far on this trip!  She's slept well, hung out for hours at a time at the hospital like a champ and had tons of fun laughing at Koal when he's goofy!  I'm so thankful that she's so easy and has be great at just going with the flow on this trip. We're SO, so thankful for Kade, Adry and Aily as well.  Man, I miss them BUNCHES! I'm thankful for technology to keep us connected - video chats, texts and emails - thankful to hear their voices and see their faces almost anytime we'd like.

We continue to be so thankful for my (Kerry's) mom and dad and their sacrifice of time and energy and willingness to stay with Kade, Adry and Aily.  I know the kids are having a blast, and hopefully Grammy Katie and Grampa John are as well, but I'm still so amazed at how wonderful they are to take time to do this for us.  WHAT A BLESSING they are!!

We are thankful also tonight for friends and family who have come beside us to help with the kids at home with my parents.  For our sweet neighbor who took the kids to the bakery to get cookies and cinnamon rolls...for Uncle Denny who spent time with them at Wonderscope...and for movies, camp, birthday parties, lake time, Fouth of July weekends and many other activities planned for the coming weeks...SO very thankful!

I'm thankful for Boston Children's Hospital...for doctors, nurses, surgeons and staff who are absolutely incredible. For our housing here at Yawkey and everything from the food, to the gift shop to the family center. We are so LUCKY to be able to have Koal cared for at a facility like this.

I'm thankful for friends and family who have sent texts and FB messages...just to check in, or let us know they're praying for us. They are such an encouragement and we are grateful for how God uses them in our lives.

We are thankful for family and friends who have financially supported us though this. You guys, y'all have blessed us SO immensely with your monetary gifts, I don't even know how to BEGIN to thank you!! The stress of how to pay for housing, travel expenses or medical costs is virtually erased because of the way we've been blessed by those of you that have given financially.  THANK YOU...THANK YOU...THANK YOU.

And for those of you who have been and are praying for us. My word.  What an incredible blessing and treasure to are to us.  Your prayers are such a gift...so precious and cherished.  THANK YOU...for walking beside us though this, lifting our sweet boy up to our heavenly Father.  Not in a million years could I possibly express to you how thankful we are for you and all your prayers. You are amazing...and your prayers will help us get through this.

I could go on and on about all the things we are so very thankful for. This is the tip of the iceberg...BUT, last, and the furthest from least ever, I am so thankful for a God who holds us in the palm of His hand...for grace, peace and comfort that come only from and through Him.  For Christ's love and faithfulness, and God's sovereign plan for our lives and this journey with Koal.

"I thank my God every time I remember you"   
Philippians 1:3

MRI and Echo

Today was Koal's sedated MRI and echocardiogram.  We arrived at the hospital nice and early and after some "magic juice" Koal started feeling pretty silly (and remembers NOTHING!) and sleepy.  They took him back around 7:45AM and performed both the MRI and echo while he slept the morning away! All went well with both tests and recovery was, of course, so funny.

 Drugs + Kids = HILARIOUS

After some pretty funny stories, a lot of  non-sense and a good 10 minutes of trying to convince me there was something on the floor I HAD to see (nothing...there was NOTHING on the floor to look at! Not. One. Thing.), Koalton started to wake up and had some delicious cheese-its and apple juice.  We stopped to have a lung scan after MRI recovery, and then we were on our way! It took him a good 3-4 hours to really wake up and get his energy back, but once he did he was wired! We had a fun day with stops at the playground and walking trail, a cookout at the house we're staying at, a trip to Target and the ice cream shop, and even a late night subway ride.

Koal LOVED seeing Auvy as he was waking up! 

Dr. Powell, our fantastic cardiologist here at Boston Children's called us this evening to let us know we're on for the catheterization on Friday.  Both the MRI and lung scan showed that for some reason there is less blood flow to Koal's left lung than his right.  It seems as though his left lung may be a little smaller as well.  Dr. Powell said he has no explanation for these things, so he's hoping that the cath will help give us more info on the blood flow to Koal's lungs.  The cath will also help measure pressures more accurately and give the surgical team more insight into the state of his heart and what needs to be done.

Thanks for all your continued prayers for Koal and all of us.  Adam's ankle is feeling so much better today and is definitely healing well!  Koal had a great day both in the hospital and out. Please pray that the cath would reveal all the information needed about Koal's lungs and blood flow to them, as well as identify exactly what needs to happen with his conduit and baffle reconstruction. Tomorrow is a day away from the hospital...YAAAAYYYYYY!!! I think we'll sleep in (which really just means I will NOT have to set an alarm for 5AM!) and have a little fun in Boston. Thank you, again, for keeping us in your prayers...we definitely feel it and appreciate it SO very much!

Auvy and Daddy hanging out in the hospital garden.

Pre-Op Test Day

Our day started bright and early with Koal's first scheduled appointment at 7:30AM and the hospital here in Boston.  We spent the morning meeting with doctors and nurses, hearing all about the procedures to follow in the next few days, having blood drawn and vitals taken, along with consenting to procedures, anesthesia and a million other things. Over all things went very well and Koal was so brave and patient as we waiting and moved and had all of his appointments.  We were able to spend some time this afternoon playing outside and hanging out together.

Tomorrow is Koal's sedated MRI and echocardiogram.  He asked me this afternoon if today was his last surgery day at the hospital. HA! Sorry buddy, a few more days of procedures to go before the ACTUAL surgery! (Yikes! Only one day in and he's ready to be finished!) He was, however, content to hear that tomorrow includes the MRI and echo, which are just taking pictures of his heart in different ways, AND that he'd get to be asleep for it the whole time.  Thank you for your continued prayers for him as we go through this week.  Keep praying for God's peace and comfort and  real fearlessness for our little man as we continue through this time.

Please pray also for Adry, Aily and Kade at home with my parents.  Adry is 6 and she's been pretty sad since we left.  We video-chatted with them this evening and Ads cried and is pretty lonesome with us away.  Pray for those sweet babies at home with my mom and dad - that they'd be so busy and entertained that they'd have little time to think about being sad missing us. Pray for Adry's little heart to be filled comfort and reminders that we'll return soon.  Pray for Kade as well as he prepares to go to church camp next week.  He's going with some close friends, so I know he'll have a FANTASTIC time (and maybe even miss us very little during those days!), but pray that God will work mightily in his heart, teaching him so many things and drawing Kade to Him in such real ways every day.

Thank you, as always, for your continued prayers and support.  It means more than we could ever express!

We made it!

We made it! It's been a crazy long day of travel, but we arrived in Boston safe and sound and will certainly sleep well tonight!

We left our house around 9:45am and about 1/2 way to the airport had to turn around because we'd left without the stroller! Yikes! Crisis averted...barely! Ha! Luckily we had plenty of time to get back to the airport, get checked in and ready to board. Our flight left at 11:45 and Koal and Auvy were AMAZING on the entire flight!!! Auvy slept and nursed and played and was super happy, while Koal enjoyed looking out the window, having LOTS of snacks and playing a few games on the tablet. Seriously, they were SO, SO freaking good... It was awesome.

We landed in Boston after our bumpy, but mostly uneventful 3ish hour flight around 3:30 and began the crazy train ride to our hotel. We've used the Boston public transit (called the T) before (and actually really enjoy it!), but this particular journey was NUTS! We had to take 3 different lines (blue, then orange, then green!) because one station was closed for construction. After loading and unloading from the airport shuttle and then changing trains 3 times, we thought we were good to go. Until our train stalled. And then was put on stand-by. And then taken out of service...(unload again)...but then put back in to service...nope. Just kidding. Out of service. FINALLY we caught another green line  train headed in the right direction! (Of course, it wasn't the one that took us the entire way to the hotel, so we did have to switch one more time! Whew! We love public transit and are thankful to not have to re t a car or pay a cab, but with 2 kids, a huge stroller and ALL OUR LUGGAGE, it was out of control. Ha! 

Finally we made it to our hotel and were able to have a relaxed dinner our with a friend who moved here a while back. Fun to see a friendly face and enjoy some BBQ. (Yes, you read that right...we flew from Kansas City to Boston and ate BBQ. AND, it was actually very good! No Joe's KC or Arthur Bryant's...but still quite delish!)

Koal's appointment tomorrow is at 7:30AM. Pre-op tests and labs that should take about 1/2 the day. Tomorrow afternoon may call for a nap!

THANK YOU, again, for all your thoughts, prayers and encouragement through this! It was amazing to log on to FB and see all the messages and posts after Koal's plane picture. Thanks for those of you who have been praying about our accommodations as well. We got word today that a room has opened up at the Yawkey house close to the hospital, so we'll move in there tomorrow!! What a blessing to be much closer to the hospital and save about $1200!

Please pray for our appointments tomorrow. Koal said to me tonight before bed "Mommy, I don't want to have heart surgery tomorrow."

Ugh. Poor baby. I assured him it was not tomorrow, and we talked about how the doctors need to fix his heart so it works well for a very long time. Dang. I hate to see him nervous or scared. Pray that he will be brave and fearless and that he would feel God's presence through all of this. 

And finally, if y'all could pray for Adam that would be awesome, too. He sprained his ankle big time this morning carrying all our luggage to the car and it's really hurting him tonight. I think he's learning a hard lesson in trying to do too much (too much luggage, too much walking between shuttles and trains and to the hotel...wait, WHY the heck did we not Uber from the airport again!?!?oh yeah, because he didn't tell me it was hurting!) Mostly I just hate to see him in pain. And we'll be doing lots of waking over the next few weeks, so pray for the pain and swelling to subside and for quick healing!! 

Thanks again...we love you guys and are thankful for all of you!! 

Date change!!!

Just a quick update...Koal's surgery date has changed!  We're now scheduled for Tuesday, June 28th, so just one day earlier.  (Maybe that just means we can come home a day earlier?!?! Ha!) 

We're getting down to the wire as we pack, finalize details of our trip and get things lined out here in KC.  My amazing parents arrived Thursday and are probably already exhausted from the fun-filled days with the kids.  Games of Uno and Skip-Bo have already been played, many outside activities experienced, and with trips to the grocery store, school and Home Depot, the days spent in KC have been busy already! We are SO thankful, and SO VERY blessed to have them here and to have them stay with Kade, Adry and Aily while we're in Boston. Pray for them!! For energy, patience and wonderfully long restful nights! The kids are so excited they are here and are thrilled they'll be here to hang out with them for the next few weeks. 

Koal had a week and a half of summer school/camp at Academie Lafayette last week and the week before. He absolutely LOVED it, and LOVED having Monsieur Jones as his teacher! We took this picture above the first day of summer school.  Koal is hoping to get back for one more week in July after surgery.

Thanks again for all your continued prayers for Koal and our family during this time.  The past week has been a bit of a whirlwind as we finalize plans, cross things off our to-do lists, and run a bajillion errands in preparation to leave. I've talked with teachers, friends and even strangers about our trip and Koal's surgery a lot over the past week or two and it's really starting to sink in that it's almost time! (And boy do I have A LOT to do in the next day and a half!!!) Please continue to pray for final details to fall into place. Pray for safe travel, easy flights with the kiddos and an easy transition to our time in Boston.  We continue to pray of course for the doctors and nurses at Boston Children's Hospital, and for all the pre-op procedures, as well as Koal's surgery.  I will update here throughout our trip. Thank you, again, for all your thoughts, prayers and support!!

Royal's game with Grandpa John!