Post-Op Day One

Jack had a fairly uneventful night last night. He woke up every 20-30 minutes but would fall back to sleep pretty quickly. He slept for a solid 3 hours from 4-7am. Dr. Dabal came by this morning and said everything was looking great and that Jack was doing really well. Physical therapy came by pretty early and asked Jack if he wanted to get out of the bed. He had been wanting to get out of bed all morning so he was more than willing to go with her to the bathroom. It was a rather big undertaking considering all of the tubes and wires that are connected to him. They had to get him hooked to a portable oxygen tank and cap off all of his IV’s and tubes to get us to the bathroom. I stood in front of him and held his hands while the physical therapist, the nurse, and Josh all lifted him off the bed and onto the floor a little at a time. He walked with me then, holding both hands, all the way to the potty. He pee peed really good and then walked all the way back. By the time we made it back to the bed he was exhausted and needed to get comfortable and rest. 

His pain has been rough today. He is really struggling with the chest tubes. He hasn’t mentioned his actual incision one time… Its all about those tubes. Several friends told us to expect that. The tubes are very painful and once the tubes come out, your baby will come alive again. The problem is that the tubes are for the fluid that is draining and Jack has a TON of drainage. Dr. Dabal told us that we could expect to stay 2-3 weeks just waiting for the draining to stop because most Fontan patients experience a significant amount of fluid drainage. Basically, the tubes will be the last thing to go before we can take him home. Yuck. 

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At around 3 this afternoon we got the green light to move to the step-down unit. You can’t imagine how surprising and overwhelmingly amazing that felt. Jack stayed in the CICU for over 3 weeks last time around. To leave the CICU after one ONE DAY this time has been unreal. We don’t know how to act! When we got to our new room we realized that here Jack doesn’t have to be attached to so many monitors! He has his two chest tubes, his main line in his groin, another line in his hand, his oxygen, his sat monitor, and his heart monitor. We got rid of his arterial line before we left and got to say goodbye to his oxygen shortly after getting to the new room. And he is satting a BEAUTIFUL 90 on NO OXYGEN! Praise Jesus!! 

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Since getting to the floor Jack hasn’t been able to keep anything down. We’ve tried milk twice and he threw it up both times. He has thrown up about 4-5 times total, sometimes just dry heaving because there is nothing in him to throw up. Tonight he is holding down a few sips of gatorade. BUT he has been pee peeing pretty consistently so he’s not dehydrating just yet. We’re going to keep pushing the gatorade slowly and hope that it stays down! 

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In the grand scheme of things Jack is recovering perfectly. His saturations are holding strong in the low 90’s. His color looks amazing. He got to come off of oxygen and his IV drip. Right now its a waiting game. We’re just watching the fluid drain and hoping that it slows down. It’s beyond hard to watch him in all of this pain but ultimately the pain is temporary and will go away. The bottom line is that our baby is done. The surgery that has been living in our thoughts and dreams for the past 4 years is over. Day by day he will get better. Before we know it he will be back to running and playing and this time he won’t get winded as easily and he will be even harder to keep up with! And, God willing, it will be YEARS and YEARS before we have to face anything like this again! 

God has really shown up and shown out this time. I can’t even really wrap my brain around it. Before Jack’s Glenn surgery when he was a baby I used to sit in the floor next to his cradle with my hand between the bars holding onto his little foot and crying and begging God to save him. I was so scared of that surgery. I didn’t know if we would ever get to bring him home again. And let me tell you friends, it was a long hard road. God didn’t let me go in expecting it to be easy. Because He knew it wasn’t going to be. He prepared my heart. 

And this time around in that same way He prepared my heart again. But this time, I had peace. I can’t even explain it. After what we went through last time I should have been terrified. And I would be lying if I said that I wasn't scared. I cried my fair share of fearful tears. But something in my spirit was there. Holding me together. Telling me to let go of my fear. That it was all going to be ok. So much so that when I was praying about the surgery there were times when I couldn’t even find words to say. I just found myself telling God that I needed Him to help me trust Him. I wanted to just lay it at his feet and I needed SO MUCH GRACE to be able to do that. And y’all, He gave it to me. Seriously. He did. I can’t explain it. I just felt so much peace and assurance that this time would be different. Not because we deserved an easier road because last time was hard. Not because Jack was older and stronger. Just because God was telling me. I could feel it in my bones. This time would be different. 

There is no time when you will find yourself closer to God than when you face the unimaginable. So many people tell me that they can’t imagine what we’re going through or how hard it must be. That’s true. If I had two perfectly healthy boys I would think the same thing. But God just gives you what you need when you need it. He doesn’t even wait for you to ask for it. That’s what grace is. Its God moving inside you, giving you comfort and peace and strength when you didn’t even know you needed it. I can’t credit the strength and the peace to myself. I’m a human, a mom no less. I’m a mess over my kids. Jack stubs his toe and I fall apart. No, this is ALL GOD. None me. And the way that He works within us, pouring his grace over us and then doesn’t even demand the credit. I mean, I could take all the credit and be all, look how strong and brave I’m being, and he probably wouldn’t even zap me down with a lightening bolt. I mean, I don’t know for sure but I don’t think He does that usually. He just fills us up with whatever we need in the moment and then watches us walk in peace because He loves us so much. He wants to see us at peace. I guess that’s where grace began.

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PS- Brother came to visit us today and we finally got our first sort-of smile out of Jack. I knew H would be the one to bring his smile back! They love each other so much! <3