Ethan got his trache yesterday. It went well. It is nice to see his face, even though it is a sumo wrestler face. They already lowered his sedation a little hoping it will increase his blood pressures. . . then they can wean the dopamine a little. So far the theory is working, except he is a bit uncomfortable. They think they have not been able to wean the dopamine because his sedation and withdrawl meds have kept him too comfy and kept his blood pressure too low. I hope we can make headway on the dopamine. I was starting to feel discouraged. I really want to get him on the carvedilol (heart failure med) to see if it will help.
And even though I hate that he is a bit uncomfortable, he looks better on less sedation. He keeps looking at Greg or I, or his nurse, and telling us a sob story (babbling)! You can even hear him a little because the doctor put in a trache that is too small and air gets past the trache to his vocal chords. The docs on the unit are going to make the ENT come back and put in a bigger size. But for now we love the air leak!
We have had a range of emotions as we have begun to research our options (if it comes to transplant). We feel so bad that Ethan has been through soooo much already and yet we are back at the drawing board. They have begun running a few tests just in case it comes to transplant, they want to have everything ready to send out. The final item will just be another cath. But we are still hopeful the heart failure meds will break the cycle and we can put off transplant for awhile and get him home. We never thought we would hear the T word this early, however all HLHS babies will eventually have to have a transplant because eventually the "half a heart" gets worn out from doing ALL the work! So its not a completely new concept to us.
A wonderful nurse practitioner on the unit came in last week and told us she had a dream with Ethan in it. She said she has been doing this 15 years and has dreamed about procedures and mishaps, but never specifically about one of her patients. She said Ethan came to her in her dream and said he was going to get better. Of course I bawled like a baby! That it what I want as a mother. But my first question to her was, "Did he mention if it was going to be before or after transplant?"
He is a major fighter. But then there is a part of me that is more guarded, and as Greg calls pesimistic. I prefer to call it being a realist! I don't want to put him through anymore, and I wonder if all of this is worth it. We have decided to do as they have told us, and take it day by day. All I know is that it is nice having his sedation lowered. He is acting more like a baby. I do feel slightly guilty that I am getting joy from watching him suffer a little. I just love that he is looking to me for help, giving the pouty lip, and babbling. So cute.
5 comments:
Don't feel like your being negative. I think exactly like you do and I think it actually helps us handle the hard times better. For what it's worth, he looks absolutely adorable in this pic. I hope the kids' first couple of days at school were great and must be nice having a little regular schedule now.
I'm bummed that I missed hearing his voice yesterday! (Even if it is a sad one.)
I too am a realist and Ryan is the eternal optimist! He thinks that we're going to make it until Taylor is 3 before she needs surgery (which is what they originally told us would be the ideal goal). Maybe it's a male/female Mars/Venus thing?
I wonder if you can think about your future options too much right now & may be feeling the weight of those decisions before they they need to be made and who knows- maybe when the time comes, the Spirit will direct you and the choices will come easily and you'll be at peace. So do your research, but don't spend too much time worrying yet. Easier sad than done, right? :-)
I hope he makes quick improvements and can get on that carvedilol!
You are not a pessimist, just a realist. I totally agree. I see how much jax has been through and wonder if this huge heart surgery he needs that is so risky is indeed worth it.
I was reading your sweet blog about your baby and my heart goes out to you. I will keep your baby in our prayers. It brakes my heart what he has to go through. I hate seeing babies in pain. It's hard sometimes to be optimistic through hard times.But Heavenly Father is watching over him. I wish the best for your family. I hope your sweet little guy gets stronger. By the way this is maren bloomer (cadiente). Keep you in our prayers.
Poor little puffy guy. He really is so handsome, puffiness and all!! I bet he even liked that he could get some sounds out. I'm sure he loves hearing his voice out in the world.
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