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.