Oh Boy...

Tuesday, June 7, 2011

I spoke with the surgeon and his nurse this morning and I am trying to process everything that was said. They are happy with the amount of fluid that is draining from the tubes and also the amount that is around his heart. They will do another echo tomorrow and as long as everything stays the same or gets better they will pull out the chest tubes tomorrow. Four weeks of chest tubes and draining all comes down to this echo tomorrow. Lord have your way. They will then keep him overnight do one last echo on Thursday morning and then possibly send him home.

Like I said, I am not sure how to even process this. Do I jump up and down, do I take it with a grain of salt, how should we respond? My heart is leaping for joy right now and yet I am not 100% confident that everything will go according to plan. Mostly because nothing has gone according to plan in this place.

Inevitably it all falls back to trusting God and his plan. Amber and I know that He can get us out of here in an instant and we also know he could keep us here longer. We rest in his plan and his purpose.

Whatever the news is tomorrow, We will rejoice.

We believe, hope, and have faith for the miraculous, and in the same breath we know God has our best in mind even if it doesn't come back clear.

Just heard an amazing song that encapsulates the journey we have been on. It speaks to the pain of trials and suffering and recognizing we don't walk this road alone. It is called Never Once by Matt Redman, here are just a few of the lyrics.

Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

The Verdict

Monday, May 30, 2011

Well after being here in the hospital 18 out of the last 21 days trying to get fluid away from Griffin's heart the decision for surgical intervention is all but finalized.

Today we waited. We were told that he wouldn't have an echo today because of the holiday and only if it was an emergency would they have it done. Well this afternoon, his heart rate began to jump and after attempts to bring it down they decided to have the echo technicain come in and see if the high heart rate was caused by fluid around his heart. Sure enough there is a moderate to large effusion (fluid) that was seen by the technician. I am still waiting to hear from the cardiologist what the next steps will be. Will they need to remove the fluid before surgery or will they just closely monitor him until Wednesday morning? I should hear more in the hours ahead.

We are going to try and bring Flynn up to the hospital tomorrow so the brothers can meet and say hi before surgery.

I stumbled across this video as I was reading some blogs and it couldn't have been more timely and more clear about God's heart.

Oh and Eden got a tick in her hair today. Good times.

Waiting

Well this morning there has been no fluid that has drained. That means one of two things:

1. The fluid around his heart has dried up and is fixing itself or

2. There is a blockage in the tube not allowing the fluid to pass through.

I am praying it's the first one.

I spoke with the surgeon this morning and he mentioned that if the echocardiogram still shows fluid on the heart they will proceed with the surgery.

So here we sit.

Waiting.

Anticipating.

Expecting.

Praying.

I will keep you posted.

Griffin is better at waiting than I am.

Major Prayer

Sunday, May 29, 2011

Ok so now that you are up to speed. We have this nasty fluid problem in Griffin's heart. The source of the fluid is from the gore tex tube that they placed in his heart during the last surgery. Apparently they have only had 2 or 3 cases like this in the past ten years. What happens is that fluid seeps out of the tube and fills the sack around the heart. Sometimes the fluid dries up on it's own and other times they need to surgically repair it.

We have been waiting the past two weeks for it to drain and clear up on it's own. However it hasn't exactly cooperated. If it doesn't show significant signs of improvement in the next couple days they will be doing surgery on Wednesday.

Surgery would entail them having to open his chest up again. Then, depending on how bad it is, either repairing the existing gore-tex tube or replacing it all together.

We really do not want him to have surgery again. Please join us in praying, fasting, interceding for this to be resolved. We will find out Monday morning if any fluid has re-accumulated around his heart and that will be a big sign of whether they do surgery or not.

Thank you for partnering with us through this.

May 29th Griffin Update

27 out of the last 54 days have been spent in the hospital.

In case you haven't been caught up to speed, Griffin has had fluid accumulated around his heart that, if left untreated, would be very damaging to his heart and health. Twice we have gone in for "check-ups" with his cardiologists and twice we have been immediately transported to the Pediatric Intensive Care Unit (PICU). They then promptly insert a tube into his chest as an attempt to drain the fluid. At one point almost 16 oz was drained in 12 hours. This time, Griffin and I have been here since the 15th of May waiting to see if the fluid would stop draining. It has been an up and down roller coaster of thinking we are about to go home to being told he would be here for another week. It feels like there is no end in sight.

I went home for the first time last night to be with Amber and our other children. I held Amber in my arms as she was weeping. The physical pain that comes from our family being separated has become more than she can bear. It is a hard reality that our youngest son, Flynn, is a week old today and has never met Griffin and I have only seen him a handful of times. As I tried to comfort Amber I couldn't help but begin to ask "Why?"

Why is this happening?

Why is it dragging out for so long?

Why won't the fluid stop?

Why can't we just be together as a family?

God.... why?

I know I am not the first to ask that question and I certainly wont be the last. When we ask why it's because we don't understand. And in all honesty it is hard to understand when we go through hard times. The beauty of loving God who cares more for us than the birds of the air is that we don't have to ask the question why. He knows the plans for us even though we don't see it. I don't have to labor with the question, my "why?" rests in the hands of his infinite love and wisdom.

This takes faith. Faith is sometimes easier to talk about than to live out. Lord please give us faith to trust you with the why.

Good News!

Wednesday, April 13, 2011

Today Griffin got his chest tubes out. This was huge. A vital part of the process of him coming home. Now we wait to get his blood levels regulated with the blood thinner.

There is a light at the end of this tunnel!

Both Amber and I are feeling the affects of being apart and the physical toll this is taking on each of us. For Amber, being 8 months pregnant, it has been difficult physically and emotionally and for me my body is starting to fatigue and fall apart.

On the other hand we are so thankful that things have gone so well. We know that there are so many children and families who have it far worse. Reflecting on that, helps keep everything in perspective.

Here are some videos and pictures of the day:

about to get his chest tube out

Our awesome surgeon taking the tubes out

little man with his mommy

Hospital: Day 7

Tuesday, April 12, 2011

You may or may not have heard that Griffin didn't get his chest tubes out today. A little frustrating, however Amber and I have discovered that our timing is not always the best timing. God has the best timing and He knows exactly when Griffin needs to come home.

It sounds like they are going to remove the chest tubes some time tomorrow. They might even start him on the blood thinner tonight. It is hard to get any hopes up because we have thought for the past two days that the tubes were coming out and they haven't. Pray everything moves along smoothly.

As much as I love being with Griffin and helping him out, I am pretty sick of this hospital. Amber and I are eagerly awaiting the day when we can have our family all back together again. Thank you again for all your support and prayers.

Here are a few pictures from the day.

they removed the dressing on his incision today,

you can see his scar.

we have had some great father-son time

probably his favorite thing to do:

play with the remote and push the nurse button

we had a sweet skype session with Amber and the kids before bed

this is how he fell asleep

From Bad to Better

Monday, April 11, 2011

Today started off pretty rough. Ever since we came in to the hospital we had anticipated a week long recovery for Griffin. So naturally, we were thinking he would be able to come home on Wednesday. Unfortunately, we had a minor set back today. Because of the fluid on his lungs they were unable to remove the chest tubes which means the date of his departure is moved further back. Why does this affect his departure so much? Well he has to get his chest tubes removed before they can start him on the coumadin (blood thinner). Otherwise he will bleed too much as they remove them. Once he starts the blood thinner we have to wait 48 hours before we can leave because it takes that long to be able to regulate it in his system. If everything goes well he will get his chest tubes out tomorrow and we will be able to come home on Thursday or Friday.

Although we received that news this morning the day turned out to be one of the best days we have had. In order to get the fluid off his lung they encouraged him to get out of bed and start walking around. At first he was quite resistant, but as time went on he took more and more steps and eventually looked at me and said 'Daddy..., run?' I had to remind him that running was out of the question but we did do a few laps around the PICU hallways and were able to hang out outside the crib.

Griffin sitting on the couch

Getting a sweet gown

Best mom ever

So although the initial thought of being in this place longer was quite daunting, seeing Griffin come to life today was amazing. And the other great answer to prayer was that they took another x-ray of his chest and said his left lung was 30% better than what it was in the morning. He is now resting in bed and Amber is rubbing his trying to help him get some rest.

Pray that everything goes well and he is able to have the chest tubes removed in the morning. Thank you so much to all of you who have sent encouraging texts, emails, comments, and facebook messages it shows the amazing dynamics and community in the body of Christ.

Here is one verse that really encouraged both Amber and I today Romans 4:17-22.

Great Visit

Sunday, April 10, 2011

I was blessed to have a Ron & Jody Zappia stop by the hospital today. I am so thankful for their leadership and friendship. They took time to pray for Griffin and listened to all the details of what he is experiencing. Griffin was happy for the most part, but started to get a little irritable by the end. Thanks Ron and Jody.

Hospital Day 5

Well it's Sunday morning and it feels a little strange to be in a hospital and not at church. However, I am committed to being here with Griffin throughout his recovery. I love him so much and it is great to see him start to recover and act more like himself. The first few days were filled with pain, confusion, and anger for our little man. Now he is starting to communicate again and interact a little more. I shot a quick video of him this morning that I thought I would share with you. Thanks again for all your prayers and support.

Saturday Night

Saturday, April 9, 2011

I am so thankful to my brother in law Donny, who came out to sit and talk with me tonight. He even brought some chocolate shakes from portillo's. It has been a long past four days. I have lots to say, but with Griffin asleep i need to get some rest so that I don't get sick.

Here are a couple big things that need to happen for Griffin to get home:
a) the fluid on his lungs needs to be gone.
b) he needs to have his chest tubes removed. (they are there to drain the fluid in and around his lungs)
c) begin taking blood thinners
d) regulate the right dosage of blood thinners (can take a couple of days to do this).

We are looking at another 3-4 days here in the hospital if everything goes according to plan.

Pray that everything moves along quickly.

Thank you.

Video Update

Friday, April 8, 2011

Hey everyone, just hanging out with Griffin tonight so here is a video update.

Reflections

A couple of days before Griffin was born I decided to do a search on what his name actually meant. The search kept showing that a griffin was a legendary, mythical beast that had the body of a lion and the head and wings of an eagle. At first I thought, 'that's a pretty cool animal, who wouldn't want to be half lion-half eagle?' Then I realized that wouldn't work as a viable name meaning when Jody Zappia announces it for the parent-child dedication at Harvest. (that was an inside joke to all you harvesters out there). So I searched a little more and discovered that the name Griffin had a Welsh meaning and thanks to the wonders of modern technology I discovered that his name meant strong in faith. I found a great verse on faith and wrote it in my journal and prayed for him. The verse was from 1 Cor 16:13-14 it says "Be watchful, stand firm in the faith, act like men, be strong. Let all that you do be done in love." A few days later he was born and little did Amber and I know that it would be our faith that was going to be tested.

It has been a long journey with Griffin. As I sat and thought about this I decided to look for other verses on faith. I compiled a few and thought I would share some to encourage you in your faith as well.

Isa 7:9 - If you are not firm in faith, you will not be firm at all.

Heb 11:1 - Faith is the assurance of things hoped for, the conviction of things not seen.

Heb 12:2 - Jesus is the founder and perfecter of our faith

2 Cor 5:7 - We walk by faith, not by sight.

Gal 2:20 - I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

1 Tim 6:12 - Fight the good fight of the faith.

1 Peter 5:9 - Resist him (Satan), firm in your faith

There are many more but I thought I would just start with these. My faith has been challenged and I hope yours is too.

Griffin Update

amber giving him his first sips of water.

Griffin's heart function is great. The doctors are excited about his progress and say that he is on track with the recovery timeline. However, in the midst of his heart doing well he is in a bunch of pain and discomfort. From yesterday afternoon until now he was up coughing and screaming. Needless to say he didn't sleep much at all (and neither did I). He isn't interested in food at all which for him is a big deal. Food is always a motivation for Griffin, but he doesn't want anything. He is also on restricted fluids, so even though he is thirsty I can only give him little bits otherwise he might get fluid built up in his chest.

holding him for the first time

Thank you so much for your prayers. I had a moment last night of overwhelming emotion. I was trying to console Griffin as he was crying and nothing was working. So I started a slideshow of all our family pictures for him to watch. He wasn't interested, but it hit me hard as a father watching my son in pain and seeing pictures of my other children and missing them. It made me reflect on God the Father and it blows my mind to think of the depths of anguish He must have felt seeing his son suffer and die. It doesn't matter what we go through in life we have a Father who understands our hurt and pain and knows what is best for us. That is what i place my hope in.

Here is a clip of Griffin finally falling asleep this morning.

surgery recap

Wednesday, April 6, 2011

yesterday was a long one. we were up at 4:00 and on our way to the hospital by 4:45. the hospital was a ghost town. nobody in sight. we registered and they showed us to the pre-op room. he was prepped for surgery; weight, height, and a lot of ID checking. they gave him something called versed. it knocks him out a bit and causes temporary amnesia, i like to call it 'liquid courage.' it allowed him to be able to go into surgery without screaming at us or at the nurses carrying him. he was in surgery for about 4 hours. everything went really smooth with surgery. the procedure is called a Fontan, and he now has a Gore-Tex tube connecting his IVC to his pulmonary artery. Griffin will never have a normal heart, however now his heart can function in a way to allow him a life that is like everyone else's.

now we have to wait over the next week to get his chest tubes removed and get him used to being on blood thinners. i put together a video of all the things that went down yesterday you can watch it here.

thanks for praying and supporting amber and i through all of this. we can't thank you enough.

Getting Ready...

Monday, April 4, 2011

Well things are in full swing here. We finally made it through John being gone for a week and now are trying to wrap our head's around Griffin having surgery on Wed. For John and I we keep going back and forth between being happy that the surgery is finally here and wanting to take Griffin and run away from it all.

Today we took Griffin in to get his chest x-ray, labs done, and a meeting with our surgeon's nurse. I tried to ask all my questions so I could be prepared for anything. My nurse Natalie is always the best at setting my mind at ease and walking me through it all. So thankful for her. Griffin did great, didn't love the blood draw or as you can see the x-ray, but besides that he was is crazy life filled self.

The plan...

We will be taking him in on Wed morning. He has to be there by six and will be first in line for surgery. The surgery should last about 4-5 hours (depending on how much scare tissue they have to go through). They will put him on the ECMO machine (heart long bypass machine) and then will be detaching his inferior vena cava and then reattach it to pulmonary artery (which will feed straight into his lungs). Which should make it so his blood oxygen levels should be in the 90's (what a normal person's levels are).

After surgery the first day will be tough. He will be out of it and probably in a lot of pain. Then hopefully each day he will get stronger and a bit more back to himself. For the first few days he will have to keep the chest tube in which can be quite uncomfortable. But our nurse told us that after a bit he will be able to get out of the bed and actually play on the floor or get up and move around (even with the chest tube still in). Knowing Griffin he will want to get up and be everywhere!!! Then the big thing they need to do before he can go home is regulate the blood thinner that he will be taking. They told us to plan for him to go home in about a week.

I won't even go into what we are preparing for as we go home until I know exactly what will be happening.

Our sweet Griffin.

That is about it from here. John's parents get in late tonight and then we will be preparing and having some good family time tomorrow. Please pray for peace and strength as we prepare for it all.

Round 3 of Surgery

Thursday, February 24, 2011

After 20 months since his last surgery we are right around the corner from Griffin's final heart surgery. Everything has been going so well with his development and his heart over the past year and half, that it is hard to believe we are re-entering the world of labs, procedures, and operations. Looking at him you would never know that he has a heart defect. The only indicator is his shortness of breath from all the running around he does.

As I write this, Griffin is having a cardiac catheter. It is a 3 hour procedure where they will run two or three lines through his neck and groin and allows the doctors to have an accurate blueprint of his heart when they perform the next surgery. The recovery will be difficult because he has to lay flat for six hours after the cardiac cath. Anyone with little children knows this is a difficult task. Pray that the procedure will go smoothly and that the recovery will be quick.

Here is a little video and some pictures of him before he went in.

finding joy

Monday, December 7, 2009

this was a video that our church (Harvest Bible Chapel) put together to tell a small part of our story. We are so thankful that God has given us the opportunity to share with others what he has done in our lives. enjoy.

"Joy" Harvest Bible Chapel from Arcane Productions on Vimeo.

life at home

Tuesday, June 23, 2009

i have realized that it is a lot harder to update the blog when you're not sitting around for hours a day in the hospital. now i have responsibilities that i have to take care of.

it is pretty exciting to see how griffin has progressed since we have brought him home. he has still been in pain and is not quite back to his normal self, however it hasn't even been a full week since the surgery. some moments you'd never know he had heart surgery and others it is quite evident he was in the hospital last week.

here are some pictures of life here at home




and a video that is about 30 seconds of griffin playing with a toy, with his foot.

almost there

Saturday, June 20, 2009

well griffin and i are waiting for the surgeon's nurse to come around and tell us we can go home. so we will wait patiently (not easy to do after 75 hours). this is us hanging out at some ungodly hour this morning.