So Ethan is what one cardiologist likes to refer to as the most bizarre hypoplast left he has ever come across. And they wish they could find one similar to him in research, because then they would know what to do! Hmmmm- that makes me feel better:) I know what he means though. It was just funny to hear.
What we do know is we need to start some heart meds and get his right ventricle to be able to relax and open up more when it is filling with blood. So we are backing off on some of his lung meds and starting the heart meds: Digoxin and Carvedilol. Hopefully this cocktail will make his heart and BNP happy. We are going to tweak his antibiotics a little as well. Once we get his heart meds working and in a therapeutic range, then they will bring back the lung meds and diuretics and hopefully be able to find a happy balance. If we can find a happy balance then they want to do the heart cath on him. Dr. Cleveland said maybe we can even get him well enough to go home and thrive for awhile before we do the cath. He wants to get him in a good place so that when we do the cath we know if what we are doing is enough. If it isn't, then we can evaluate what the next step needs to be. More meds, a procedure, or transplant. But that is weeks out.
For now the focus is to get over infection, start heart meds, get kidneys recovered, and trache him. As mentioned they are also going to trache him (maybe next week). It will be much easier to manage him medically and get his lungs healthy. It will also be easier to hold him and do therapy with him so he can strenthen. Especially if we can't find that right balance for him soon and he ends up staying in the hospital for awhile. I have already asked the staff. . . they are not okay with me setting up a bouncy house outside his room for his first birthday party. . . so I said "then we better be home by then"!
5 comments:
I love that you have already been through so much and still have a sense of humor about the situation. You are a great example.
Oh, he better be home by his first birthday!! I'm sorry he needs a trach, but if it gets him home, then so be it. Hopefully his new cocktail of meds will do the trick.
I love how you find humor in anything.. I can just picture a bouncy house in the hall.. He WILL be home by then! Hoping that plan goes just like it should and the meds help his little heart. Lots of prayers..
Ha! We spent a first birthday there and the funny thing was is that I realized that the people who worked at the hospital were the people who knew her the best! Sad huh? Still not ideal and she was completely drugged in all the pictures! I hope Ethan starts playing by the rules soon (and more consistantly)... Hang in there! We're thinking about you always!
You're such a strong heart mommy. Steel Magnolia (laughter through tears). I'm going to be down there tomorrow for a modified barrium swallow study. Scarlett & I will stop by and say hi to you two. :)
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