First of all, Bodie is contining to improve, praise God! Thank you so much for all of your sweet emails and posts - so sorry I haven't had a moment until now to update. I was waiting to process all of the information we were given so that I could give a complete update (and this one is long - sorry!). He is now completely off the epi (a HUGE step in his recovery considering how dependent he was on it just a couple of days ago) and has come down considerably on the 02. They're no longer paralyzing him, but just putting him on a painkiller/sedative instead. Yay!!!
We've definitely had some big breakthrough moments in the last 24 hours. The biggest is that we're not just dealing with Hypoplastic Left Heart Syndrome here. After Bodie had such a horrendous day on Tuesday and left all the doctors scratching their heads (we've had 3 separate doctors tell us they've never had a patient with ALL of these things at once), the electrophsyiologist sat down and really reviewed the file. Nothing seemed to fit into a typical HLHS kiddo. He finally reached the conclusion that, in addition to HLHS, Bodie is very likely dealing with a genetic issue of some sort causing electrical current issues in his heart (heart arrythmias, a ridiculously low heart rate, etc.). Since Dusk has a really low resting heart rate and a left ventricle issue, they're thinking that Bodie may have inherited something genetically that is causing these other issues for him. They didn't really think about it before since literally, the chance of a kid having both HLHS AND a completely unrelated rare genetic issue affecting the heart is like 1 in 5 million or so. Yep, looks like Bodie may have hit the crappy jackpot. Crazy stuff. Anyway, it's sort of an academic question since the treatment of his low heart rate and arrythmias is the same regardless of whether they have a genetic causation or not, but it's interesting nonetheless and I think we're going to start genetic testing specifically of Dusk's cardiac condition. If it comes up with anything, then we will also have Bodie (and also possibly Sierra) tested.
The other big breakthrough has been that, while in the past Bodie was able to tolerate the arrythmias and lower resting heartrates, he can no longer tolerate them. (Just as a background, when he was in the hospital, his resting heartrate was in the 80's (but they opted not to treat it since it didn't seem to bother him), the first week home from the hospital it dropped to the 70's and then to the 60's and by the time we were admitted to the ER, it was down in the 50's - crazy low for a baby, let alone a single ventricle kid). Since his heart function is still great but his heartrate has been dropping, they're leaning toward thinking it's a genetic thing. And Bodie's body definitely does NOT like it anymore. Since he's been on a pacer and then on a drug that speeds up the heartrate, he has substantially improved. He really had a miraculous recovery over the past 2 days since they brought his heartrate up. Bringing his heartrate up brings his pressures up, which improves everything overall for him. So there's really no question that he's a great candidate for a pacemaker.
They've also realized that he just isn't getting enough bloodflow to his lungs. Although his lower heartrates haven't helped his situation any, they don't think it's the only contributing factor to why he has always struggled with oxygen saturations. They believe his shunt, although working great, just isn't getting the blood flow that he needs to his lungs. There is a different kind of shunt they can put in called a BT shunt (he currently has a sano shunt) which allows for a greater bloodflow to the lungs. They want to go in and put a BT shunt in to help Bodie out (they're not sure what they'll do with the sano shunt - they may narrow it or take it out entirely at the time, depending on how Bodie responds). The BT shunts typically last a bit longer than the sano shunts (kids with sano shunts tend to need their 2nd surgeries (the Glenn) between 4-6 months, sometimes a bit earlier, while kids with BT shunts can typically make it 6-9 months). The Glenn surgery significantly increases bloodflow to the lungs, so the lungs have to be mature enough to handle that. Since Bodie still struggles with pulmonary hypertension and somewhat immature lungs, he would not be a good candidate for an early Glenn. So, switching him to a BT shunt gives the short-term advantage of helping get a little more blood flow to his lungs while buying him time for his lungs to mature enough and the pulmonary hypertension to settle down enough for him to be ready for the Glenn.
SO...they're planning to let him recover for a few more days and then take him in for surgery to put in both a BT shunt and a pacemaker on Monday. Generally speaking, these 2 procedures are nowhere near as risky as his Norwood surgery was. However, the fragile condition he's in as a result of everything he's gone through over the past 2 days makes the surgery riskier for him. So, he needs lot of prayer over the next few days. He needs prayer that his body continues to heal and at lightning speed so that he is as strong as possible for his surgery on Monday. Both the BT shunt and the pacemaker will really give Bodie the best shot possible at making it to the Glenn in good shape, so we really need to do the surgery. We didn't expect to be putting our son back into God's hands for another open heart surgery just yet, but, well, God had other plans. Please pray that we can continue to place our faith in Him and have peace that all will be well.
Thank you ALL so much for all of your prayers. I know for a fact that's the only reason Bodie is alive today. Several things happened over the course of the past few days that could only have been God's hand:
1. Me taking Bodie to the ER. He really wasn't in bad shape at all and it was just very minor changes in him that made me take him. It is clear to us now that had I not taken him in when I did, he would not have made it.
2. The doctor deciding to try to pace Bodie on Tuesday night. On Tuesday night, Bodie started spiraling downward very quickly. I was in the room as his pressures, sats and heartrate were dropping. They kept pushing epi and he would stabilize for about 5 minutes and then start to drop again. They had him maxed out on the epi and were still pushing additional boluses and fluid and it was clear nothing was working. They really didn't know if Bodie was going to make it at that point. Dr. Rivera, the attending on that night, walked in and suggested that perhaps we try pacing Bodie. No one actually expected it to work, but it did, and very quickly. Given that the entire team had been trying to stabilize Bodie all day and that thought hadn't occured to any of them, but just happened to occur to Dr. Rivera, can be nothing short of God's hand on her mind. God used Dr. Rivera to save Bodie's life Tuesday night - of that, there can be no doubt.
3. The electrophsyiologist piecing everything together and realizing that something else besides HLHS was going on. Had he not figured this out, they would not have been able to come up with the plan that they have. God was clearly working to enable him to come up with that kind of solution.
All of these things have only happened because you have all been petitioning on Bodie's behalf. Please do not stop - his fight is clear from over. We know God has big plans for him - please continue to pray that we get to see those plans!!!
Amy, You don't know how relieved I am to read this!!!! My pillow is tear stained, I barely slept on Tuesday night. God is merciful! You better prepare Bodie for public speaking, because he is going to have the most amazing testimony. God has big plans for this little guy, I have no doubt. Now I have tears of joy! Thank you to the Doctors that didn't give up! Love you all! ErinReplyDelete
So good to get an update about precious Bodie. It's been hard to think about much else. PRAYING! PRAYING! PRAYING! Felt so blessed to get to meet sweet Bodie last week with his big sister giving him kisses and his sweet (but tired!) mom making him smile like I'm sure only she can! My heart pours out to you as parents Dusk and Amy, for the exhausting roller coaster this must be. Now that you have been an example to us all in faith, trust, and hope. Know that hundreds of people, friends and strangers, are standing with you and for Bodie. God is touching us all through this and we will pray, pray, pray, for your sweet, sweet boy. xo, Katy & the Barnes FamilyReplyDelete
Such good news! I have been refreshing this blog all day long. I will continue to keep Bodie and your family in my prayers.ReplyDelete
INCREDIBLE, GOD IS SOOOOOO GOOD! I am so glad of this report and will continue to pray as well as updating our church. Love you! (((HUGS)))ReplyDelete
Praise God you were prompted to take Bodie to the ER. And praise God for using Dr. Riviera to save Bodie's life. She is truly an amazing doctor! We are praying for Bodie to gain strength and for the surgeons to have wisdom in treating him.ReplyDelete
oh, amy - what a relief that he's doing better today! thanks for taking such time and effort to keep all of us posted. you are, and will continue to be, in my thoughts and heart. stay strong!ReplyDelete
We will continue o pray for sweet Bodie and all of you. We LOVE him! He is already such an important person in our lives... in our family. God Bless You. We pray you'll have a peaceful and uneventful night. Much Love,ReplyDelete
You all are in our thoughts and prayers. Miracles abound with our heart babies and Bodie is yet another example. Praise God!ReplyDelete
I am so happy to hear that they have likely found the cause, and that they have a plan in place. I will continue to pray! I hope that one day Bodie will be doing something no one ever thought possible, and you can look back and say "remember when we weren't sure he'd make it through the night?". That's my prayer for Bodie man!ReplyDelete
Although I don't know you guys(I'm friends with Missy in Colorado), I've been following your blog and praying for Bodie whenever God puts him and your family on my mind. As you have stated, sometimes God has other plans and I'm touched by your courage and faith when He takes things in a direction you were not planning for. Continue to rest in Him!ReplyDelete
We are continuing to pray for Bodie and he is in God's hands. I'm also praying for you Amy (as well as Dusk, Sierra...and the extended family) that you will be held so close to the Lord right now and that amazing peace will be upon you. You are an amazing woman and your love for God and your family is so evident in how you live. Love, Bonnie and the KerrsReplyDelete
The Grace Bible Church Deacons asked me to tell you that a legion of saints and even more the Spirit Himself prays on Bodie's behalf.ReplyDelete