Like a Boss

Tuesday he was flat on his back for ~6 hours, chest sliced open, a machine was breathing for him and pumping all his blood for him.  They patched his heart like a bicycle tire, added some stuff from a corpse, and took out the one item that had kept him alive this long.

Here's a photo sequence of what he was doing on Saturday...

I used to think open-heart surgery was a big deal...

Surgery Day +4 - 1230

Everybody is home, prayers answered.

Surgery Day +3 - 1600

More tests, everything is looking good.  His heart has a few sounds that most "normal" hearts don't have (a gallop and a rub).  This isn't alarming on account that he doesn't have a normal heart, he has a repaired heart.  So anyway, as long as he continues as he is I think we'll be going home tomorrow.

He's spent most of the day today walking up and down the halls and riding the various toys that they keep here.  It's strange to walk more than 10ft with him and not hear him breathing hard.

Now he's napping because he's all wore out.

Surgery Day +3 - 1100

I came back to the hospital this morning to find Jacob sitting is mommy's lap with zero wires connecting him to outside machinery.  He still has 2 IV's in but otherwise is fully disconnected.

He's been eating and drinking, we walked around a bit and he's been watching TV with us.  He's a little clingy and cranky which I think is mostly just a function of the fact that he's done being poked and prodded.  Getting him home will do a world of good.

Speaking of, it looks like we will come home tomorrow in all likelihood with a slim possibility of going home today.  Tuesday his chest was spread wide open and foreign objects were in his heart, by Friday we're talking about going home - truly a wonder.

This is what I walked into this morning.  No wires!!

We were walking down to the cars.  We took a little ride around the floor.

844 > 843

Today was also a very special day for another reason.  Today, Joshua has been a Shanks for 844 days.  When we got him he was 843 days old.  Which means (for all of you who are slow with numbers) that as of today, Joshua has been a Shanks for over half his life.

A few days after we got him.

A couple weeks ago.  See a difference?

 

Surgery Day +2 - 2000

Jacob is doing better and better.  He's been a bit more grumpy but I think that's the drugs, discomfort, and tiredness working.  He stood up once and this evening he got the chest drain tubes removed.  Everybody keeps saying how well he's doing and are giving us optimism that we'll be able to bring him home sooner than later.

I came home this afternoon.  It was nice to see the kids and spend some time with them and my mom.  I'm now looking forward to a shower and my own bed.

Surgery Day +2 - 1100

Jacob is out of the ICU and into a regular room!  They continue to pull more tubes and items off/out of him - he now has only 6 items in/on him.  He's still very lethargic but I guess that's another way of saying that he's resting a lot.  Either way you slice it he's doing well and the fact that they moved us down here is indicative the everyone agrees that he's progressing.

Heather slept at home last night.  I slept in a chair in the waiting room this morning after she got here - it was like camping sans the hot-dogs.  Many nights spent on offshore dive boats, lay barges, and platforms have prepared me well for this experience.

Finally grabbed a few pics, you can see a clear improvement over time.
 

This is what he looked like when we first saw him after surgery.

Jacob getting a drink yesterday by sucking it out of a sponge.  He could only have 1oz of water so  using the sponge prolonged the activity, otherwise he drank it in 1sec and started looking for more.

Heather and Jacob taking selfies yesterday afternoon.

Resting is our new room.

Surgery Day +1 - 2320

Jacob gotten a bath, he's in a crib now instead of a bed, teeth brushed, he drank some water, and is generally doing great.  Every time we complete a task he wants to high-5 everybody and he even gave the nurse a thumbs-up (in his own unique way).  He recently received another morphine injection so he falls asleep any time we leave him alone for a couple minutes.  Right now the resp. therapist is here and is beating on his back - they're just weird.

I had a lengthy conversation with his nurse about adoption, how it works, why we did it, etc... It reminded me all over again why I'm sitting in a hospital room with a little chinese boy...of all things.  It's because he's my son, duh.

Surgery Day +1 - 1900

Jacob is getting better and better.  He's now eating and drinking and we've been able to hold him in our lap.  More and more stuff is coming off/out of him and he is generally doing great.  It's looking more and more like we will get moved to a regular room tomorrow.

Heather and I have been taking turns napping.  She has gone home to see our other little ones and see how Granny is doing (Granny has the other 4 by herself*).  She'll probably come back up here sometime early in the morning.

* - There are people coming to help her during the day and bringing food and transporting the older two so she's not totally on her own but she is the singular person that's there with them all day.

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At this moment, we are missing midweek worship at our church so this seems like an appropriate time to say this.  We have been so blessed by God through our church.  I love them dearly and they have loved us well.  But isn't this how it should be?   Follow my logic:

• Nobody has ever loved me as much as Christ loves me, nobody (John 15:12-13, Romans 5:8).
• The church is the body of Christ on earth (Ephesians 5:23, Colossians 1:24).
• Ipso facto, the church is the one group of people on earth that loves me more than anybody.  This is so much the case that if they fail to love me and my family, I should rightfully conclude that they are not really the church (Matthew 5:44, 1 John 3:14, 4:20).

So it's settled them, at least in my mind.  Northeast Houston Baptist Church is indeed the body of Christ and they are doing for my family what comes most natural to them, they are loving us well.

Perhaps you're reading this and you are wishing that someone loved you unconditionally or that your church experience was even remotely like mine.  My response to you is that you should start where my logic started - Christ.  Christ loves you so much he died for you, if you'll surrender yourself to him you'll begin to feel the warmth of his love no matter where you are.  If you're not ready for that, find a local church that genuinely has Christ as it's head, you'll experience Christ's love in that place even if you aren't a Christian yourself.

Surgery Day +1 - 1400

Just a quick note to let you know that Jacob is recovering well.  They continue to pull things off/out and it's looking like he may be moved out of the CVICU into a regular room tomorrow.

Surgery Day +1 - 1130

Jacob is more and more awake all the time.  He was able to drink a little water earlier.  He wanted to drink a lot more but he's on rations for right now.  Heather is hanging with him while I get a little rest.

A dear friend of ours came by about 10:00.  It was great to see her and thoughtful of her to come.  She brought donuts and kolaches, it was great to see those as well.

So far Jacob is recovering at an excellent pace.  If he continues then we can expect to leave the ICU and get into a regular room either late tomorrow or on Friday.

Surgery Day +1 - 0830

Since last update they've been pulling more and more things off/out of him.  Right now there are still 17 items attached/inserted.

They did pull the ventilator out around 0500.  He's breathing well.  The respiratory therapist (they're a shifty bunch, can't trust them) came by and checked his O2 saturation without any O2 running.  It hung around 94 which is even better given that he's still shaking off his sedation meds and he's living on pain meds for now.

At about 0820 they pulled the LA line (left atrial pressure, it's a pressure sensing hose that was still inside his heart, google it).

He's been awake a bit more but still sleeps more than anything.  He's clearly being kept comfortable.

Heather's sleeping a bit.  She came a did the second watch last night so I could go get some sleep.  We have a room in the Ronald McDonald house here in the hospital.  The bed was about 18" shorter than me, hard, it was freezing in the room and I didn't have enough blankets but I still woke up sweaty - it was just like being offshore.  And just like being offshore, a good shower made everything right again.

If only I could drink coffee in the CVICU.

Surgery Day - 2359

Jacob is still resting nicely although you can tell he's getting more and more ready to be awake.  Right now they're keeping him sedated until they're ready to pull the breathing tube which will likely happen early tomorrow morning.  He opens his eyes once in a while and will answer questions by shaking his head but then he goes back to his own little world of sleep.  He's basically on another planet still.

We're down to 19 items that are on/in his body, the only one that's been removed is the most inconsequential (blood pressure cuff).  More to come.

Surgery Day - 2120

Not much has changed in the CVICU.  Jacob is resting peacefully (mainly because any time he starts to move or rustle they push more drugs in and he regains his peaceful demeanor).  I'm covering the first watch for the night and Heather is getting some sleep downstairs.  I'm using the time to do some work and generally reflect on life.

Surgery Day - 1645

We have come back to the CVICU to see Jacob.  My impressions/observations:

• For the first time ever he is pink, like a normal kid.  No more blue fingers, toes, lips, etc...
• Also first ever, his hands and feet have a normal temperature.
• He has 20 "items" on him or in him.  Some will start to come out/off tonight but I'll keep a running count for you, cause that's what I do.
• There are 12 sources of liquids permanently "plumbed" to his body through a couple manifolds (it's interesting how much of what they are doing for him right now crosses over with my profession as a pipeline engineer).  He has another 3+ ports for temporary injections.
• He vitals and stats are excellent and he the perfect little patient.

People have said to us that it must be hard to endure this and see your baby in such a state.  In a way, yes.  But really, where else would I want to be?  I'm sitting by my child's side, the child that I hand-picked to be my son, witnessing him taste fully functioning life for the first time ever.  It's not hard to endure, it's miraculous and I have a front row seat.

Surgery Day - 1550

We met with the surgeon and he confirmed that everything went according to plan.  Jacob's oxygen levels are perfectly normal now and his heart is working as a normal heart would.  They'll finish closing him up and he said they would probably keep him knocked out until tonight or tomorrow AM.

My thoughts turn to Matthew 5:45 - God has been good to us with no consideration as to whether we are the righteous or the unrighteous.  His blessings fall upon us all.

Surgery Day - 1515

Jacob is off the heart/lung machine, his heart is working and blood pressure is good!  This is fabulous!  From here they are going to observe him a bit and then start closing up shop.  Our next update should be a visit from the surgeon to discuss how everything went.  Sounds like we're on the downhill side of the surgery.

We should get to see him by about 6:00-6:30 after they close him up and get him situated in the ICU.  Looking forward to seeing him!

Surgery Day - 1425

So....  The VSD is closed up, they've installed the new arterial valve/conduit, they've removed the shunt (installed in previous surgery).  While they were in there they found an atrial septal defect (more holes in his heart) so they are closing that up.  At our next update they should be out of his heart and have him off the life-support machinery.  So far so good...

Surgery Day - 1300

Measurements are complete and Jacob is going to get a cadaver valve put in his heart.  At the time we got the update, the surgeon was closing up the hole in his ventricular septum.  Jacob is stable on the heart/lung machine and doing great.

We were visited by some friends who were nearby and one that works in the medical center.  We were also visited by a couple of our pastors who brought us lunch (which is why this report is a bit delayed).  Today has not really been too difficult however the company was a very welcome distraction and a good chance to visit with some very dear friends.  We are very blessed to have so many people supporting us and praying for us and Jacob.

After our first consultation this morning I started thinking that eventually somebody, maybe even us, would get some bad news...After we finished eating a lady emerged from her consultation in tears and proceeded to sob in the waiting room.  I have no idea what her story is but it's a stark reminder that not everybody's day is going well, not everyone has such a great support network, not everyone has a sure foundation in their life.

Surgery Day - 1200

Jacob is now on the heart/lung machine and is stable.  The Dr. is measuring everything very well to determine exactly what repairs he can make and how he'll proceed.  Dad always said measure twice, cut once.  I think that would apply here.

Surgery Day - 1040

Latest update, they're still plowing through his chest to get him opened up.  Plowing is really the exact wrong word as they are going meticulously slow to get through all the scar tissue from his previous surgery.  It seems silly though to say that they are being very surgical about it...that would be such an uncreative way to describe a surgery.

He's doing well.  We're doing well.  Everyone else in the waiting room is doing well.

Surgery Day - 0920

Got our first update.  He went to sleep well and is resting.  They are presently making their way through his chest with an expectation that they'll encounter scar tissue from the previous surgery.  So they're going slow at it.  I guess I would too.

Next update will be 1030ish.

We met a nice couple in the waiting area.  Their son is 1 year old and having his 3rd open-heart surgery.  You might say a prayer for them and their son.

Surgery Day - 0730

Today, Jacob gets a new heart.  Who couldn't be excited about that?

They took Jacob back for surgery at 0700.  So far everything is a "go".  Heather and I have found the heart surgery waiting room which will be out campsite for the day.  We will be reunited with Jacob this afternoon or early evening, depending on how things go.

Popeye Arms

Surgery Day minus 1

We came to the hospital early this morning so they could do all the pre-op.  It's about 17:20 now.  Here's just a few of the more noteworthy events for the day.

• Had the following discussion with the social worker:
• SW: "Who is here with Jacob?"
• Heather:  "His mother and father."
• SW:  "Is he your biological child or is he adopted"
• Micah *with bewildered expression on his face*:  "Adopted."
• SW:  "Do you have any paperwork to substantiate the adoption?"
• The rest of this conversation spiraled further downhill....
• Once we got to Jacob's room for the night the nurse is doing is routine and mentions that they VAT team will come at midnight to start his IV.  They need to make sure he's well hydrated for tomorrow.  Heather explains that Jacob will NOT be getting an IV installed at midnight.  The nurse says that when they want to do it.  Heather engages "momma-bear mode" and the rest of this conversation heads south.
• The VAT team came around 5:00pm (Heather won).  They got him stuck well enough to draw some blood.  Then as the VAT guy was flushing the line he blew it out.  Now Jacob's right forearm is a balloon of saline.
• This afternoon Heather's phone rings.  I answer, it's the financial folks from the hospital.  They set about to explain the costs for his procedure and how much our insurance will cover and how much is left for us to pay.  She offers to hand me over to "Sarah" who can collect my portion over the phone.  I declined.  The lady then explains that they need to secure funding before they can perform Jacob's procedure.  And THAT was the end of that conversation...

All that aside, we've seen everybody for the day and we're just playing with Jacob in his room.  Got a long day ahead tomorrow.

Playing in the hallway after supper.

A New Heart for Jacob

On Tuesday of next week Jacob will have his heart repaired.  For the first time in his life, he'll have a heart that supports him instead of having one that is killing him.  What will they be doing in there?

• His pulmonary artery will be cut open (it's currently closed) or replaced.  If they cut it open they'll graft on some other "tissue" to close it over making an open vessel out of it.  If they replace it, they'll simply install a conduit made of artificial materials or some of his own tissue.  Much of this will be decided on-the-spot by the surgeon depending on what exactly he finds in Jacob's chest (likewise for everything else).
• He'll probably get a pulmonary valve, he currently doesn't have one.  It'll be an animal valve, human valve, or artificial valve.  I say probably because there's a chance they won't put one in.  Apparently you can survive without one...
• His overriding aortic valve will be put back where it goes.
• The hole(s) in his ventricular septum will be closed up using tissue from his own body or something else.
• The shunt that was installed in China will be removed.

After this procedure Jacob's heart will be practically normal and he'll stand a very good chance of living a vibrant life.

To the casual outside observer Jacob is a normal little boy, active and mischievous.  His problem isn't obvious to everyone.  There are visible symptoms but they are subtle and most people never notice them until we point them out.

Once people understand Jacob's desperate condition, there is universal agreement that an intervention is appropriate.  All agree that it is fundamentally impossible for Jacob to fix his own problem.  Someone with truly unique skills must slice Jacob open and fix his heart for him.  It's obvious to everyone, nobody objects.

Jacob on the other hand has no idea what is going on inside his body nor does he understand why he needs surgery.  To him, Tuesday will be a very unpleasant day full of unwelcome people doing unwanted procedures.

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The other day I met a lady on the bus.  She has the same condition as Jacob, her heart is defective and it's slowly killing her.  It's been that way since conception and just like Jacob, she is clueless.

To the casual observer, and in her own opinion, she is completely healthy and normal.  Her problem isn't obvious.  There are symptoms but they are subtle and most people miss them.  I noticed, so I asked her about it.  The ensuing conversation confirmed my suspicion that her heart is malformed.

Unlike Jacob she needs a complete transplant.  She needs a very special person to remove her heart and replace it with a new one,  I tried to tell her this but she wouldn't have it.  She was offended.  The irony, her defective heart caused her to reject even the notion of getting it fixed.  That's how her heart is killing her, it lies to her.  It promises the world while leading her into her own grave.

Imagine that.  If we refused to fix Jacob's heart for some reason and chose instead to just watch him die, there would be public outrage.  We would be jailed.  However, these same people take great offense if I even suggest that THEY have a heart problem.  They would prefer for me to keep my mouth shut and just watch them die.

I can't do it...  Jacob is getting his heart fixed whether he wants it or not, because I love him that much.  Likewise, I'll go to my grave warning others that they need to get their heart fixed too whether they like it or not, because I love them that much.  I love you that much.

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Perhaps you're reading this and you're not quite sure what I'm talking about, it's because you have a heart problem just like the lady on the bus.  It's OK, I get it.  I had to get my heart fixed too.  It's simple though, here's what you do...

• First you have to acknowledge the problem.  You have a heart of sin.  It separates you from the source of live, God himself.  This is how David did it - "I acknowledged my sin to You, And my iniquity I did not hide; I said, "I will confess my transgressions to the LORD"; And You forgave the guilt of my sin." Psalms 32:5

• Next you seek the help of a professional, In this case, Jesus Christ.  Call on him to save you.  Here's how it happened one night for a Philippian prison guard - "he said, "Sirs, what must I do to be saved?"  They said, "Believe in the Lord Jesus, and you will be saved" Acts 16:30-31

• Once you've done that, God does the rest - "I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh."  Ezekiel 36:26

I love you, get your heart fixed.