Sunday, June 5, 2011

Discharge Day

I still can't believe we are home already.  HOME!!!!  Home from Cain's 3rd open heart surgery.  This is a day that I've known about and prayed for since I was 20 weeks pregnant.  Driving home from the hospital was truly an overwhelming experience.

During rounds on Wednesday we learned that Cain would be discharged that day.  We were thrilled.  Cain was completely over being in the hospital and having people constantly touching him.  He was to a point where he would kick and thrash about any time someone came near him.  

Rounds took place around 9AM and then the rest of the morning was spent doing paperwork and other things necessary for Cain to be discharged.  We reviewed CPR, picked up meds from the pharmacy, etc.  

The thought that I would ever need to do CPR on my son scares me to death.  Hopefully that will never be needed but it's certainly better to be prepared.  I still remember sitting in my first CPR class before we took Cain home from the hospital for the very first time.  I remember sitting in a daze with other parents all learning CPR thinking I cannot believe this is happening.  At that time I was so scared to take Cain home from the hospital.  A lot has changed since then and thankfully reviewing CPR this time wasn't as scary.  

It was certainly bittersweet as we were leaving the hospital.  Vanderbilt Children's has been our "home away from home" several times now.  Everyone has been wonderful to Cain and to our family.  I know this won't be Cain's last time at this hospital (he'll most likely be back next year to close his fenestration hole) but leaving after this 3rd open heart surgery was very emotional.  I've known since September 22, 2008 that Cain would need 3 surgeries to survive.  Before Cain was born we were told how risky these surgeries would be and that 20% of the babies don't make it through all 3 surgeries.  It's on overwhelming feeling for Cain to be Post-Fontan. 

Cain still has a long road ahead of him.  He has been discharged from the hospital but he is still in a recovery stage.  We were sent home with many meds and we can't pick Cain up under his arms for 6 weeks.  

I was really surprised at how much I cried as we drove home.  I suppose the magnitude of the past several years hit me all at once.  

At the time of discharge it had been 10 days since Cain walked.  When we put him down to walk in the house his little legs were so wobbly.  We didn't realize he would be so weak.  He has always been a strong-willed little boy and he was determined to walk around and not let us carry him.  

It broke my heart to see his little legs not work and have to watch him keep falling down.  To be honest I was more than worried for a little while but as the evening went on he started walking better.  

I know all the pictures look like Cain was in a great mood this day and thrilled to be coming home.  Honestly, he was in a terrible mood all day and did more kicking and crying than anything.  I'm honestly surprised we have a few pictures with smiles in them.  It was very stressful once we got home not knowing what to do to pacify Cain.  

We finally decided that maybe Cain was just in a lot of pain and the only way he knew how to express it to us was by kicking, hitting and screaming.  We decided to make sure we stayed on schedule with his pain meds (Oxycodone) and give it to him every 4 hours.  Once we started doing this Cain completely became a different child.  He is much more like himself.  I'm glad we finally decided to stay on top of his pain meds and wished I had suggested that more when he was in the hospital.  

I wish this surgery had been the final surgery that would fix Cain's heart.  Sadly, his heart will never be fixed and he will more than likely need "tune-ups" though life.  The good feeling though is that we have NO SURGERIES lingering in our head.  We can start living our lives as "normal" as possible.  We are so proud of our little survivor and how far he was come.  


Carly said...

Its such a great feeling knowing this is behind you! I read that a hospital somewhere in the northeast if I remember correctly had done a few valve replacements in the cath lab, not having to do open chest/heart! Wouldn't it just be awesome if technology evolved enough that out boys wouldn't need another surgery.... EVER! :)

Hope's Blog said...

Amazing. He looks so good and I know it has to be a relief...even if his heart will never be 'fixed'. The last surgery seems so surreal to me, but I am looking forward to having it behind us too. I have loved reading the posts and getting an idea of what to expect...keep up the posts so we can feel how wonderful it is to be on the other side.

Katherine said...

Hooray for Cain! What a survivor in deed! I know he still has a lot of recovery to do, but I am glad he gets to do it at home. Stay strong! You and Brad are kick a#% parents!

Melody said...

Hey Girl! I have been praying for your sweet little man's recovery & finally took the time to read your blog to catch up on how he is doing. I am so glad that you are all doing ok. I will continue to lift Cain up in prayer for a speedy recovery!