What a difference a week makes.

So this time last week we were still in the waiting room as Patrick had his heart surgery.  Today we are talking about a discharge date.  AMAZING!!! Coming into this we knew that we were in the hands of the most capable physicians in this country, but even so, Patrick's repair was a BIG surgery and even the best doctors have patients that don't do well. Fortunately, Patrick has done better than we could have ever imagined.  All of your prayers have definitely been answered by a most gracious Heavenly Father.  We went from surgery, to the ICU, then now to a regular room all within a span of 7 days.  His cardiologist did an Echocardiogram today among other tests and both he and Patrick's surgeon feel that he is doing well enough to leave the hospital Wednesday. We are having a few other tests tomorrow that are really unrelated to his heart.  As most of you know Patrick's heart is on his right side, and all of his other organs are on the opposite side as well.  It is a condition known as situs inversus totalis.  Some of these children have other abnormalities that need to be watched long term so the plan is to test his spleen, lungs, and GI tract tomorrow to see if he does or doesn't have these extra conditions.  After that we will verify that his meds are dosed perfectly, and Wednesday we will be discharged.  It would be great to be home with the rest of the family for Thanksgiving, but will have to wait one more week.  We need to follow up with our cardiologist next Tuesday before travelling back to Alabama Tuesday evening.  Three weeks is a long time to be away, but it has been 100% worth it for Patrick to be able to receive the care he has received from the preop testing to surgery to post operative care.  I'll add a few pics to the post, and if anyone is in Boston for Thanksgiving let us know!!!

Happy that his Mommy is back from Alabama

Walking just a few days following surgery

Patrick and his new buddy, Frankie, a fellow heart warrior

Getting a little love from Mommy at Wahlburgers

Patrick and I with Dr. Emani, Patrick's surgeon.

A 3D printed model of Patricks heart given to us by Dr. Emani.  Eventually this type of technology will help surgeons better plan when repairing complex heart repairs like Patrick's

 

Clean smiling boy!

Still in the ICU but smiling with a new gift

A pretty pink foot immediately post op

Coloring while wearing his new Boston Red Sox hat

Patick, Frankie, Olivia, and AnnaLei, all fellow heart warriors

A boy gets tired waiting on his Mommy

Check out my new truck

Just chillin

A boy and his blankie!!

National Adoption Day

Today is National Adoption Day.  November 21, 2015.  We will celebrate today by giving thanks for the progress that Patrick has made since his surgery.  We are now in a room (semiprivate ugh… but still out of the ICU).  Today he is having his chest tubes and pacemaker wires removed.  Every day he has moved forward faster than we could have ever imagined.  He has also been an AMAZING patient.  He has cooperated with the staff.  He is eating and drinking, and we went for a long walk today around the nursing unit.  I hope we will get to ride around the hospital a little today to change his scenery a little.  There is a pretty cool aquarium downstairs and a few other kid friendly sites to take in. 

While I am thankful for all of this, National Adoption Day saddens me a little too.  I have the rest of my family 1200 miles away and I miss them.  I think Patrick misses them too.  Honestly he seems a little depressed at this point in the process.  Everyone tells me its normal, and I’m sure it is, but that doesn’t make my heart hurt any less. Reflect for a minute on the last year of Patrick’s life.  He was in an orphanage that was not ideal but familiar.  On his 3^rd birthday some strange people come in and take him away from those familiar surroundings.  He loved us from the start, but can you imagine the confusion in his mind?  During the first few months in a new country, with a new language, and a new family he goes to multiple doctors’ visits and gets stuck and poked and put to sleep.  He wakes up with bruises and bandaids that hurt.  Then he gets on another airplane to fly to an unfamiliar place where he has open heart surgery that lasts 13 hours and wakes up with a breathing tube in his throat.  I’m not sure this is what he signed up for.  Yes we know this is all for the best, but he is 3 and all he knows is this really stinks (I wanted to use another word but I thought it was probably inappropriate.) 

See for adoption to happen brokenness has to occur.  For Patrick to join our family he had to lose his first family.  For his heart to be repaired he had to endure some hurt.  Sacrifices have to be made by everyone involved.  So why do it you might ask? Because my family would be incomplete without adoption, and because it is what our Heavenly Father did for us. For us to be adopted into His Holy family and become children of God, brokenness had to happen.  Jesus HAD to die for us to be accepted.  There isn’t another way.  Jesus had to endure unbearable pain so that we could be saved. But He did it willingly and graciously. Remember he asked God to if there was any way to remove this burden from Him, but in the end He knew the Father’s will must be completed and he accepted it. 

So on National Adoption Day I ask that you continue to pray for Patrick’s healing and strength.  Also pray for his precious heart and mind as he tries to comprehend all that has happened to him.  Pray for his brothers and sisters at home as they miss him and long for us all to be together.  And finally pray for those who have adopted or have been adopted.  Pray that God will heal their hearts from the brokenness that they had to endure.  Pray that they would understand why they were abandoned by their first family, and help them to understand that they will never be abandoned by their Heavenly Father.  Pray for those who are adopting.  Find a way to support and encourage them.  Help them to show the love of Christ to those who may never see it otherwise.  And one more finally: Pray for those who are considering adoption for their family.  Pray that they will clearly see the calling of the Holy Spirit, and if led that they will take that step to bring a child home.  A child that has suffered unbearable loss, but who can be restored by the love of a family.

Blessed be the God and Father of our Lord Jesus Christ, who has blessed us in Christ with every spiritual blessing in the heavenly places, even as he chose us in him before the foundation of the world, that we should be holy and blameless before him. In love he predestined us for adoption as sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace, with which he has blessed us in the Beloved. In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace, which he lavished upon us, in all wisdom and insight making known to us the mystery of his will, according to his purpose, which he set forth in Christ as a plan for the fullness of time, to unite all things in him, things in heaven and things on earth.

                                           Ephesians 1:3-10

"Day"

So you're probably thinking what kind of title is "day?"  Good Day?  Bad Day? It's daytime now? Actually its none of those.  Yesterday was the roughest day that we have had.  Patrick was tired from being off of the ventilator so there wasn't much interest in eating, walking, or coughing.  He was wheezing a good bit and requiring nebulizer treatments.  He did want to drink, which would have been a good thing, except he was overloaded with fluid and they were limiting the amount he could drink.  Top that off with a full-on Defcon 5 tantrum brought on by one of his medications.  Needless to say Lauren and I were whipped.   Fortunately he wore himself out with the tantrum and rested well for a while.  Also God made diuretics so the fluid overload could be handled.  We spoke with our surgeon and cardiologist, and neither were concerned that any of this was a huge setback.  After all is was only post op day3, and he had progressed very rapidly to this point.  As it wore on to night, things were finally looking better.  Patrick woke up more peaceful, and his respiratory status seemed to be improving.  We moved to a different location in the ICU that was a little quieter than our previous room, and Patrick has slept well overnight.  I feel certain that today we will be moved to a regular room and hopefully have a few more tubes and lines removed.

So that still doesn't explain the title yet.  Well since we have been in Boston Patrick has shortened my name from Daddy to "Day."  Over the weekend as we explored the city a little, I bet we heard "Mommy and Day" a thousand times. We laughed because if he didn't have something new to say he would just say the same thing over and over and over, always prefaced by "Mommy and Day."  After 1 whole day in surgery and another day on the ventilator, Patrick's voice has been scratchy and very hoarse, so we haven't yet heard his sweet voice.  But last night, or better yet very early this morning, I heard from his bed, "Day."  When I checked on him I saw that his face was not swollen at all and he looked like our little boy again.  It was definitely a gift from God and a great thing after yesterday.  I know there are families who have waited months to hear the voice of their babies, and some who never get to hear it again, which honestly just makes me more thankful to have heard that little "Day."  It's just more proof that God is with us through the easy times and even more so in the difficult ones.

 As God promised Israel through Isaiah:

"fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand."
                                        Isaiah 41:10

Post of day 1 in the book, day 2 off to a fast start

So we are now on to Post op day 2.  Day 1 was relatively uneventful.  That’s a really good thing.  Boring is good here.  Yesterday his sedation meds were brought down just a little so that he can wake up.  He is doing well with this overall.  He has that scared look occasionally when he tries to wake up but gets really comfy when his mommy holds his hand and strokes his hair!! Today should be a little more active.  The major goal is to get him off of the ventilator and the breathing tube out late this afternoon.  Several of his lines are going to be taken out as well.  From listening to the doctors here, getting him off the ventilator on day 2 is fairly aggressive but they are still very optimistic that he will be successful.  Honestly I don’t think it could be going any better than it is. Today is a huge step toward him getting out of the ICU which is a huge step toward getting home. God has answered all of our prayers in a mighty way.  There is still a long way to go, and we still have no idea when we will be coming home, but if he continues to progress at this rate it will be quicker than we anticipated. 

So as you walk through your day please pray that Patrick will “fly” as we get him off the ventilator, and that he won’t be too overwhelmed by the chest tubes, IVs, etc. He didn’t care for those when he woke up from his heart cath.  Who would?    Thank you in advance for the prayers.  We are eternally grateful.  

“Because he holds fast to me in love, I will deliver him;
I will protect him, because he knows my name.
When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
With long life I will satisfy him
and show him my salvation.”                                                                                                

Psalm 91:14-16

Well it’s been quite a day.  We arrived at the hospital at 6 am with Patrick, and gave him to anesthesia around 730 not knowing what the day might hold or exactly when we would see him again.  Fast forward about 14 hours, and we finally got to stand at the bedside in the ICU.  Ok maybe I shouldn’t fast forward through all 14 hours.  That might leave out a few of the important details.  Patrick had a successful biventricular repair.  His current oxygen saturation is in the 90s.  His blue feet are pink.  So are his hands.  It's truly a miraculous sight.  If you read the last blog, the opening between his ventricles was closed, the graft was used to connect his right ventricle to his pulmonary artery, his pulmonary veins were opened up, a small amount of work was done to his mitral valve, and his Glenn shunt was reversed.  His surgeon was pleased.  His cardiologist was pleased.  Because of this Mommy and Daddy are pleased.  He did not require a pacemaker which was a risk, and his chest was completely closed in surgery.  Assuming everything progresses well he won’t require any more trips to the OR for years to come.  The next 24-48 hours are critical, but as of now he is doing fantastically.  God is good.  (Amen)

Now that we have cleared hurdle number 1 we set out on the road to recovery.  We have a baby boy full of lines and tubes, all of which are in use right now.  We are thankful for the team of doctors and nurses who are working hard to use the right mix of meds to keep him stable.  He will definitely stay on the ventilator tonight and maybe several days.  We pray that those lines and tubes are gone quickly as we long to see his smile and hear his giggle.  All in His timing of course. 

I would say that all things considered it has been a good day.  We snuggled our baby this morning.  We are back with him tonight.  We have been able to communicate with friends, we’ve laughed, we’ve cried, and I’ve consumed entirely too much caffeine.  Did I mention we had to go outside of our hotel because of a fire alarm?  Another blog post I guess.  We have a long way to go before we get back to Gadsden, but I can’t help but breathe a deep sigh of relief following today’s events. 

I can’t say strongly enough how thankful we are for all of your prayers and messages that got us through this day.  You have all shown us the love of God in a mighty way.  As I sit here typing I can’t help but reflect on the grace and blessings that God has showered on my family.  He has also used the heart defect of a 3 year old orphan from China to draw each of you to His throne in prayer!! Crazy how He works sometimes isn’t it?   I have had several wonderful verses shared with me today, and all have spoken to me in different ways.  I think one however sums up this day perfectly.

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen. Ephesians 3:20-21.

From the CICU...Good night!!

Jason 

Surgery day

Well it is Monday afternoon around 1 as I type this.  Patrick has been in the OR for 5 ½ hours and on the heart-lung bypass machine for 2 hours. I suspect that his surgery is less than halfway though.  We will watch many families come and go from the waiting room.  I imagine after we leave they will turn the lights off.   Many have asked what they are doing to repair Patrick’s heart.  The next few lines are a little technical but I will try the best I can to explain what happening.  So the problems with Patrick’s heart are many.  He has two ventricles but the septum that should be between them is essentially nonexistent.  Also the pulmonary artery that normally would come off of the right ventricle doesn’t.  It doesn’t exist.  The two valves that normally separate the atria and the ventricles are combined into one valve that doesn’t work exactly right.  He only has one coronary artery.  Some of his pulmonary veins are poorly developed and did I mention his heart is on the right side?  (For those of you who want to look it up on WebMD the medical terms for these are dextrocardia, double outlet right ventricle, partial AV canal defect, and large ventricular septal defect).  So the procedure to correct all of this will include creating a septum between the right and left ventricle so that the blood goes to the aorta only through the left ventricle, not both ventricles.  Then a piece of donated aorta with a valve will be run from the right ventricle to the pulmonary artery so that blood can get to the lungs.  The stenotic pulmonary veins will be opened up, and finally the surgery that was done in China will be reversed.  He may require some work on his mitral valve but that is unclear as of now.  All of this will give Patrick a fairly normal circuit of blood and a normal blood oxygen level. Following his surgery Patrick will be taken to the ICU on a ventilator, possibly with his chest incision not completely closed.

If I lost you in all of the details here are the Cliffs Notes: He has a bunch of defects, lots has to be done to repair said defects, complications are a distinct possibility, and we are going to be here for a while. 

I’ve seen a lot through medical school, residency, and my practice, but being part of this gives me a whole new level of understanding and respect for academic doctors who are so superspecialized.  I once thought that plastic surgeons had to be ultraartistic to do their jobs, but I’m beginning to think that these pediatric cardiovascular specialists need to be gifted in the art of medicine more than any other specialist.  For anyone who has to go through this in the future so far we couldn’t be more pleased with Boston Children’s, Dr. Emani, and Dr. Marx. 

Currently Lauren and I are doing well all things considered. The next few days, weeks, or even months are going to be the most challenging we have faced as parents and as a family.  Fortunately we serve a God of grace and mercy who has planned every step in advance.  We are relying on that more than ever right now.  We have been overwhelmed by the number of messages, voicemails, social media posts, and cards to let us know that you are praying for us.  All I can say is thank you and please keep it up.  It is humbling to know that people on multiple continents are praying for us.  Even more humbling to know that the God of the Universe hears every one of those prayers.

We will do our best to give updates as frequently as we are able. 

 

Jason And Lauren