These are the latest pictures of Ethan. . . The two are from pre-op before they wheeled him away. Love the arms blocking his face just as I said "smile". He is such a guy. The first one is right after surgery.
Ugh. . . They are back! At least they came early and were caught early. For those that don't remember, chylous is the fat his lymph system absorbs and then dumps into his pleural spaces. So we are onto the nasty, low fat formula again. So once again I am appreciating the G-tube. At least he doesn't have to drink it orally.
Unfortunately his right chest tube isn't draining well (did I mention I HATE chest tubes). Its a relationship of can't live with them, can't live without them (literally). They have tried repositioning him to get it to drain. We'll see if that works.
The docs don't want to extubate (take breathing tube out) until they get more fluid off his right pleural space. His oxygenation is struggling a bit and they think thats why. Hopefully we can get extubated tomorrow. Another we'll see!
On a very happy note an eccho was done today and Ethan's heart function looks really good. That is the most important thing right now. The effussions we can fix/control within a matter of time. Heart function. . .not such an easy fix. So for this news we are extremely grateful. His heart seems to have tolerated the transition to the Glenn circulation!
7 comments:
Oh that picture of Ethan with all the wires just makes me want to cry. These babies are just so precious, aren't they? I wish I was there in Arizona to give you a big hug. That's definately good news that the heart seems to be functioning well. Will continue to pray for your family.
Hang in there, Ethan! There's only a small company of people who hear "chylous" and immediately know of all the terms that get thrown around with it: chest tubes, tolerex, octreotide and pleural spaces.
Peace to you all this weekend. We know all about waiting for chyle to stop. No fun, but we try to find comfort in the fact that seasons of waiting are usually easier than some of the other stuff that one has to deal with on the HLHS journey. So, do you have the Atrium drains with the bears on them?
http://rudysbeat.wordpress.com/2008/10/14/the-definitive-word-on-the-polar-bears/
Rolf
I can't believe he covers his face to avoid pictures, already?!! I thought that only happened when they are 1.5-2yrs old. Those little wise eyes. He is such a handsome little guy!!! Excellent ECHO news! :)
Oh I love him covering his face! Such a boy! Hang in there!
Oh that first picture of Ethan all pinned down to the bed makes me so sad! I am sure seeing him like that just pulls at your heart strings. Hang in there ... you (and Ethan) are so strong!! Thinking of you!!
I am not going to lie it makes me tear up to see those pictures. My Greer isnt much older and I just dont know how you and Greg are doing it. We are praying for Ethan and you guys and please let us know if you need something!!!
Our thoughts and prayers are with you and your amazing family. Your example and strength is a true inspiration to all. We send our love and prayers always. Ethan is beautiful!
Love, Lisa and Charles Maxwell
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