Malachi is in recovery mode once again. The narrowing apparently wasn't that bad, so it wasn't anything too worrisome. Woo hoo! BUT they still went ahead and did the balloon angioplasty to take care of it since they were already in his heart. The good findings were that his lungs are fine and the veins and shunt are doing their job to get blood where it needs to be. The pressure in the pulmonary veins was adequately low--which is a good thing. They did the blood gas from the area directly AFTER the lungs and it was good. This blood is oxygenated to the point that it needs to be, so the lungs are doing their job. The flow from the aorta and the sano shunt were almost equally good, so the flow isn't a problem. However, the sano shunt isn't exactly one single arch from the ventricle to the lungs. Instead it comes out and then goes into almost a right angle before curving up to where it connects with the lungs. So there may be SLIGHT restriction or disturbance, but it's still okay for him--just not as ideal as they would like to see. Also, his right ventricle is all well and good. The cardiologist who did the cath today said if they can correct the rhythm within the next few weeks, then he will most likely need another heart surgery. Those are the "good" things.
The catheterization proved that he does not have pulmonary hypertension. The blood flow is fine. Also, there are no further structural defects from a heart standpoint that are causing his O2 sats to be low. So now, we focus on the rhythm problem. There seem to be two different schools of thought within the cardiology department regarding what to do if a happy medium with medication cannot be found to keep him out of SVT and also to keep him from having a slow heart rate (bradycardia). I think that pacemaker vs. no pacemaker will be the big debate in the next few weeks.
The "bad" thing is that we have no clue what is going on with his rhythm. It's never encouraging when you hear the cardiologists use the phrases "I have no clue" and "he just doesn't make sense." Thankfully, we serve a big God who does know the ins and outs of our child. We are praying that He gives the doctors wisdom to figure our baby out and clarity of thought and speech within their department, the NICU team, and John and I.
So we're back and recovery mode and this is where we are... for now.
Thanks for the updates. Will continue praying.
ReplyDeleteAs I drove in to work today, I was struck with the fact we serve a BIG BIG God. And that BIG BIG God loves you, John, Emma, and that little Malachi VERY much!
HI there! Been praying and reading for awhile :) Have you read about Stellan before? He also had svt and " didn't make sense". they tried everything to get him out of SVT and they were finally able to do a surgery and so far he has been svt free....she may be a good resource to talk to! her blog is www.mycharmingkids.net they ended up taking him to boston to a specific dr who was the only one they worked with who could "figure him out". Not that this is an answer....or that you want to hear about someone elses care, but I felt like I should share! Praying for you all and Baby Chi :) God bless!
ReplyDeleteChiming in to also ask if you have ever contacted Jennifer from My Charming Kids. Her son Stellan was also a little on that stumped the medical community. They found some excellent specialists and he in now SVT free. I know the details are different, Stellan had an extra electrical pathway into his heart. But maybe there could be some sharing of info.
ReplyDeletePraying for your sweet family everyday....
Just hear about your blog. Congraulations on the birth of your beautiful son. My daughter gets bradycardic but only at night when she is sleeping. She just had her third cath recently where they balooned the same stent a second time from 4 back to 7 mm. Her sats went down after that so we ended up with a transfusion and a presciption for Revatio (Viagra). It has brought her sats up. Only problem is even with insurance it is VERY expensive. I will keep my thought sna dprayers on malachi and your family. know that there are other heart parents out there that know soemwhat you are going though. You CAN do this.
ReplyDeleteMy thoughts and prayers are with you all, I am glad it went well and I hope you all find some answers soon. Its amazing what our kids can do and overcome.
ReplyDeleteHugs,
Crystal and Eva