My 1.5 mths old baby boy has been diagnosed with CHD right after birth. Medium secundum ASD and large perimembranous VSD - 6mm.
We have seen few paeds and cardiologists and all are giving same opinion - early OHS.
He is currently on furosemide and spironolactone due to CHF. Poor feeding. Currently on NG tube.
We're put on waiting list for the surgery and future is very uncertain. There's no fixed timeline when the closure is targetted to be done. Dr just asked us to wait at home. I'm quite worried on his growth and chances to lead a normal a life ASAP. The heart hospital has long queue and I'm not sure delaying the surgery is actually more beneficial for the baby than rushing it through.
I am truly sorry for your predicament at this time. It does sound like your son requires surgery reasonably soon. It also sounds like your health system has some limitations on it that may be causing the delay. There are other medications that can be added to help with his congestive heart failure symptoms and that may be able to help him tolerate his wait. You may want to further discuss this with the cardiologist and see what else can be done. Alternatively, you could try to get a second opinion in another country, which, if you can afford to do so, may be able to have his surgery sooner.
We just got a confirmation of the surgery date on 29 May. His heart failure is under control with medication. However, feeding is an issue. How can we do without NG tube? we need to make sure weight is optimum and general health too.
Without evaluating him, I cannot tell you what the right thing to do is for him at this point. However, if your cardiologist felt that NG tube feeding was important to increase his weight, I would definitely coordinate that with your doctor and not just do things independently. Replacing an NG tube is not without risk.
Thanks Dr Boris. So far he has been pulling the tube almost on daily basis and we got it inserted again from nearest clinic or hospital. That's the biggest challenge of coming home with tube. Dr wanted to give him a week without tube to observe the weight. If we can get his weight up with oral, then we have green light to off tube permanently. Otherwise he'll be on tube again. What are the risks of using NG tube? I'm getting worried on his frequent self removal of tube.
The risks include nasal irritation and trauma as well as the risk of getting the tube down his trachea and into his lungs when it is reinserted. That said, if your and your doctor have discussed this, at least you are working together on this and have a plan for his care.
Thanks for the info. Feeding via NG tube has never been a pleasant experience for baby. So I bet he's been traumatised. He seems happy and comfortable this week without the tube in his throat. I'm definitely working hard to maintain his weight so that he doesn't need to go on tube again.
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