Friday, October 24, 2008


Today has gone fairly well. Ethan is having a hard time with swelling and fluid retention so he is on Lasix (Spelling probably wrong) and they just gave him a second, but one time diuretic a little while ago. These are helping, but he is now on fluid restriction...basically 45 cc's of breastmilk every 3 hours. His is still on adavan and morphine for pain, as well as tylenol for headaches. He is uncomfortable but stable. Last night his central lines prevented us from holding him to help comfort him, but the nurse had me snuggle him in bed whild kneeling on a chair to help calm him. This worked until about 2 this morning and then he was able to have more of his pain meds and rest fairly well. I was able to catch a couple hours nap downstairs this afternoon to sort of make up for loss of sleep last night. I'm looking forward to seeing my older kiddos tomorrow. I miss them terribly. I am hoping to surprise Elise with a movie run to see High school Musical. And we are going to try to take everyone to the zoo at some point this weekend. This has gotten long and we are trying to take time to help the kids deal with everything being up in the air. With surgery over there is a light at the end of the tunnel, but it is still way down the tracks. I'm just ready to be home with everyone. I haven't been home for a month now and I miss my bed, cooking, my own washing machine, driving...the list could go on for a while. I am so thankful to have been here though...Ethan would be much worse off without this surgery. It's just hard to see him in pain. One day at a time right??? I think the days are getting longer. Time does not fly in the CVICU... Hoping for Ethan to have a better day tomorrow... I tought the stress level was sky high before it is 10 times worse...

On the bright side, he is down to only one arterial line that is placed in his neck, so they let us carefully hold him for most of the day. It was much easier to comfort him but we were constantly watching that line to make sure it was not pulling. His IV failed in his arm so they will have to stick him again to catch another vein before they can remove his arterial line. After that is out he is going to be much easier to hold and love on.


Barbara Rees said...

Amanda I wish there was a quick fix for your little one. I put his name on the Houston prayer roll yesterday--I'm certain it's already there, but hey, can't hurt right.

I'd love to come visit you sometime--is he allowed visitors? When would be a good time?

Kathy said...

I miss seeing ya! and just hanging out. I wish I could take some of your pain and trails away....but until I can find away too...just know that I love ya! and praying for you and your family! You have a great love for each of your children and all of your have been a great example to many with your love and caring and yes even tears! keep hanging in there! I know it is tough