We are learning we are on the Lord's time and Ethan's time. After a few setbacks, today has been a quiet day with some baby steps in the right direction. We will take it! They had to put him back on one heart med that he had been off for a few days. But it is the smallest dose possible and it has made a huge difference. His blood pressure has been pretty stable since last night. He has had a few concerning moments which he resolved himself. The surgeon explained that a lot of babies who receive the "Sano shunt" on their heart struggle with fluid balance and blood pressure. That was reassuring to hear. I was starting to think it was an abnormal struggle we were having.
They have started the lasix again. This helps pull the extra fluid and swelling off his body. He needed lots of extra blood and fluid over the weekend. And to keep his pressures up they had to stop the lasix. So he now looks like the PILLSBURY DOUGH BOY! We thought we would snap a picture of him looking all chubby and compare it to what he looks like when his swelling is gone!
The other good news is they have lowered a lot of the ventilator settings. He is doing most of the breathing on his own. His chest is also clearing up. Another step in the right direction. He is also looking and moving around a little more. They had to keep him very sedated during the last couple of days. We pray for a continuation in the right direction. Patience has never been my strongest virtue! The Lord knows what I need to learn.
Much love and gratitude-
Heidi
4 comments:
But what a cute little marshmallow man!
Braden was on Lasix for 11 months. Luckily it is easy to give if he does have to stay on it. But be warned, if he comes home on it- DOUBLE UP your diapers. Cause when he pees he will PEE! What I wouldn't have given for a cath when he would pee all over in the night!
Oh, Heidi! It is a rollercoaster, but it sounds like you are handling it well, and Ethan is a CHAMP!! He will continue to get better, with baby steps! We definately learned it wasn't on our time, but the Lord's. Very humbling. I know these photos might be hard to look at, but you will like them later, even the hard ones. We will keep praying!!
What a blessing that he is mostly breathing on his own. He gets all the practice of taking his own breaths, yet the added benefits of enhanced breaths from the vent from time to time. He'll be off before we know it.
Patience certainly is a difficult virtue to master, I am confident you have shown sufficient patience and faith! I know I am the worst, and it is especially hard when it comes to our children.
Sending Love, Hugs, and Prayers,
Wendy
It is so hard to be patient in there!! Everything moves slower than you'd like it to. You're definatley compelled to learn A LOT when you're up there.
He looks wonderful to me.. I think everything he's been going through are all normal after surgery things. Can't wait for you to get the tube out!! That is a wonderful day, hopefully it is soon! We will be up on the floor tomorrow to place a G-tube in Bela's tummy so we'll get to meet you and little Ethan. We'll keep praying for your little guy and we'll see you tomorrow!
Post a Comment