We have decided to start a Facebook page so that more people can keep up with our sweet baby boy. It’s under Huck’s Heart and this is the link – https://m.facebook.com/hucksheart/
We have also decided to do shirts in honor of him. They will run from now until June 25, then they will ship direct to you from Bonfire. https://www.bonfire.com/hucks-heart/
Last night our brave little guy took a slight turn for the worse. Yesterday, after all of the chaos from the night before, things had started to calm back down – they let him start eating again, and they had taken him off the ventilator down to an oxygen cannula, and then even down to room air by the afternoon. They wanted to monitor him in CVICU overnight before sending us back down to step down unit. This was blessing #1. Nolan and I fed him last night and got him settled for the evening and then we left to go get a little bit of sleep. About 12:30 AM my phone rang and they told me that Huck had started to code but they were able to catch it in time and they intubated him immediately. They said he was very sick, not quite sure what was going on, and that we needed to get there quickly. I think we made it there in less than 5 minutes. We found out later that basically what happened was that he got very mad and instead of his heart rate going up like it should and then coming back down to normal once he was calm, his heart rate just plummeted and his oxygen dropped dangerously low. They were able to avoid chest compressions because they were in the room when it happened and able to intubate so fast. Blessing #2. They were able to do an echo last night and ran extensive labs to check all of his other organ function and check for infection, but everything looked good and his heart and shunt are all functioning correctly. So currently their theory is that this “crash” was possibly related to one of his medicines. Thankfully they have him stable and although he’s still intubated, he’s breathing above it a little. And they have a plan to adjust his meds and get him “well” again. It’s so crazy to think we weresupposed to go home yesterday and this crash would have happened our first night at home if they hadn’t caught the previous malfunction and if they hadn’t been in the room when it started to happen, we could have lost him. Blessings #3 and #4. Again, we are so thankful for where we are and the wonderful nurses and doctors at TCH. Please please continue to pray for our little love!
And this was posted Friday morning.
Huck had a good calm day yesterday and a good calm night for the most part. He’s starting to wake up quite a bit which irritates him when he realizes he’s intubated. The problem they were having when he coded was that his heart rate wouldn’t accelerate properly and then normalize, it would just crash. So they made the decision yesterday to basically start from scratch. They took him off all of his blood pressure and arrhythmia medication and let his body reset. Throughout the night, he had a few times where he would get mad, but his heart rate actually went up and then back to “normal” like it should have, which is a great improvement! He also had his repeat echo this morning and they all agree that function looks great and has improved from the last echo that had landed him back in the CVICU to begin with. The plan for today is to extubate a little later today, after the echo is formally reviewed and they make sure the rest of the team agrees with the plan. They’re watching him super close while they keep him off the meds so they can see where he’ll settle out naturally after they extubate. This picture is from last night when Huck started to wake up more and he just stared at me and his daddy for the longest time. We are so happy to see his sweet face awake again!
Thank you so much to everyone for sharing and commenting on our page and for purchasing tshirts. I would love to be able to comment back to every one of you but I’m doing good just to get an update posted. 😊 Just know that we appreciate every prayer, every well wish, every thought! Huck’s army is the best!!