Friday, September 6, 2013

The Fontan

When we were first introduced to Caleb 4 years ago we had no idea that Hypoplastic Left Heart Syndrome even existed. We have gotten quite the education in all things heart related over the past 4 years and knew that part of his condition included 3 open heart surgeries in his first 4-5 years. His first surgery was before we had him, his second came at about 6 months old and now that he's a big 4 year old, it was time for the third one, The Fontan. 

The Fontan is basically a procedure where his Inferior Vena Cava is taken and routed directly into one of his pulmonary arteries. This happens because the pulmonary artery goes directly into his lung which allows the blood from the Inferior Vena Cava to receive oxygen before it is sent to his little half a heart and then into the rest of his body. Sounds easy, right? :)  We had been told by his cardiologist that this procedure is one that is pretty hard on their body and so to expect a longer hospital stay. Initially we were told 4-6 weeks and then told 2-4. We liked the 2-4 week option the best and began to pray for a "best case scenario"whatever that looked like for Caleb. 

So, here we are the morning of surgery. God has been so gracious to us, and Caleb, in that he is not a "sickly" child and really you'd never know that he had medical issues if you didn't see him without his shirt off. He plays and acts just like a normal kid. He had started to slow down some with his playing so we knew that this surgery was becoming more necessary for him. 

after a VERY long surgery day, we were allowed to see him.
There is something so terrifying about seeing your kid laying on a hospital bed like this. 

but he had a great hospital staff for the overnight and an even greater Healer who was working on him and by the next morning he was able to be held. This was much needed for both him and his mama!
Less than 24 hours after surgery, he was up and going for a walk to a snack room!  (Levines is FULL of snack rooms and Caleb loved all of them!) We were so amazed at how well he was doing and even in lots of pain was willing to get up and do what we asked of him. Of course, it never hurts to have Mickey with him....

Post-walk to the snack room. He was exhausted and needed a nap :)
another day of rest and we thought it would be good for the siblings to come for a visit!  and boy did they pick the right day. There were firemen visiting the playroom!  Creed was so excited and the rest did the best they could to get excited too. 

Levines is such an extraordinary hospital with how great they are with entertaining children and families. The staff was unbelievably friendly, helpful and accommodating. and there was so much variety of things to do with all of our kids. We are so blessed to be in an area where sick kids are so well taken care of! Caleb had a tricycle in his room that he rode all over the place (literally!) He would take people on tours of the hospital  - at least as he knew it - and that usually included a trip to the snack room, the play room, the 3rd floor to look over the glass balcony, the rooftop play area, and a trip to the cafeteria. 

this was Caleb's falling asleep position one afternoon after his siblings left.
it's exhausting to do that much entertaining!

We made good use of the rooftop play area! There was a HUGE movie screen with movies playing all the time, and this ramp which Caleb used as his own race track :)

These pictures were taken when Daddy was in charge because Caleb is running the hospital in his "bear shirt"  Mommy preferred Caleb to be dressed if he was out of his room :)
THe bulbs hanging off his shirt are drainage tubes from his chest. The thing with the Fontan is that it takes a long time for their lungs/chest to quit draining after the procedure. So, while his O2 levels were great and his heart was functioning well, the drainage is what we waited on. So, we would just clip his bulbs to his shirt or belt loops and get on with our day!

This is another Daddy excursion where he got to go outside of the hospital to see the jumping water!
Everything is more fun with Daddy. 

You can see that the drainage is much lighter in these pictures. That's because as the drainage got less, it also changed color. What started as straight clotted blood in CICU went to a reddish but see thru liquid and then when it turned clear/white we had a problem. It's technical term is a Chyle Leak and it basically means that his body can't process fat after the trauma of the surgery so that's straight fat coming out of the tube. It got him put on a low fat diet that we have to be on for 6 weeks. In his world that just meant no bacon for breakfast - which was a big deal :(

and then, 10  days after having surgery, his tubes were out!  The drainage dried up exceptionally fast and we were on our way home!  He was SO happy to not have the tubes anymore. 

and after 2 days of his body functioning well without the tubes, we were outta there!!
It's crazy think that this whole crazy thing is behind us now. 
We planned and planned and GiGi came and meals were made and schedules were rearranged and friends came to visit and then as quick as it started it was over - in less than two weeks!!  12 days to be exact. Since our initial prayer had been for "best case scenario" I would say that God certainly did answer that - as well as countless other specific things that we prayed for along the way. We are so grateful for Caleb and his HypoPlastic Left Heart because it has taught us much about the goodness and sovereignty of God and we wouldn't trade a moment of it for anything in the world. 

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