Friday, March 24, 2006

Maybe, hopefully...

Today might be the day to get Drew off of ECMO. The rumor going around is that he's on the OR schedule but we haven't had confirmation of that yet. He's doing fairly well, all things considered.

There's a theory by the nurses that the carbon dioxide issue wasn't the only, or even main reason, decannulization was postponed. They seem to feel that issue combined with Drew's fluid retention is the problem. They have been continually trying to pull off more fluid. At his highest, Drew weighed about 13 1/2 lbs. (last week). Yesterday he was 10 lbs. 9 1/2 oz. and this morning he was down to 10 lbs. 3 oz. We're hoping that's down far enough for the surgeon to feel comfortable taking him off of ECMO. I've had some conflicted feelings about waiting to take him off but I now feel that it's best to be conservative (as they are).

We just have continuous ups and downs right now--things change so quickly. We're told one thing, then the course of action has to be changed. I'm learning to adapt to that. I detest stuff like this in "normal, everyday" life, but this is our new "normal, everyday" life.

Honestly though, Drew is looking pretty good. The nurses keep telling us that and also tell us that they would NOT be telling us the stuff they are if they didn't think Drew looked good. He's done well on ECMO and there's no reason to think he won't do well off of it...but it's hard (for me) to get my hopes up in case there's disappointment, if that makes sense. I guess it just comes down to me being terrified of anything bad happening (well, worse than has already happened) to my baby.

The good thing is that when we get him off of ECMO, we can move him a lot more and his poor little head and torso won't be so flat and misshapen. I mean he's FLAT, poor guy. Two weeks on your back with very little movement takes a toll.

Anyway, not much else has changed with Drew. He's not on any oxygen via ECMO, the lung is on and the pump is low. He's still doing much of the work himself and maintaining all of his numbers. He's such a strong boy. He loves to hold on to his tubes--be it his chest tube or his vent tube. Luckily he doesn't jerk on them, just holds them, so they don't have to paralyze him.

His nurses like to play with him and he'll just follow your every movement with his eyes, they are so expressive. He got a roommate a couple of days ago who has some pretty serious issues (not CDH) and has had surgery, so please keep that little boy in your thoughts and prayers as well. They are the only two back in their room, what I think of as the "really, really critical room." It's really the ECMO room but Drew's the only one on ECMO right now. I'll be so happy the day that he's out of that room and in one of the NICU nurseries and doesn't have to have 2 nurses assigned to him 24/7.

Enough rambling from me for now, all of this just to update and say that Drew MIGHT be off of ECMO by tonight.

This morning:


Jennifer said...

Sounds like good progress!! I'll be praying for y'all!

Liz said...

Encouraging news, we are praying for 'our Drew baby' and will add the other little guy to the list. Our hearts are with you.

Anonymous said...

Oh Jana he is just beautiful!

Anonymous said...

This little guy will always be in my thoughts and prayers. He is just gorgious Jana!

Anonymous said...

I will be praying for you. He is so beautiful.

Anonymous said...

Encouraging news today. Thanks so much for updating so often. I continue to pray for you.

Lisa said...

That sounds like some better news and some definite progress. He is soooooo cute, he really is. I am keeping him in my prayers. Hang in there! (((HUGS)))

Lisa, Zach and Emily

Crystal said...

Drew is just a doll, I am still praying for your family daily.

God Bless

Lisa M. said...

Oh He is beautiful. I am so excited for you. When our son was on ECMO some of the biggest hurddles he faced were gettting the "volume" off. He was engorged and at one point was 17.9 lbs.

My Ethan was paralitically sedated and his eyes were quite literally swollen shut. I didn't see any movement from him for so long it was terrifying.

Drew looks fabulous. I think to err on the conservitive side is by far the best. Especially with ECMO.

I too, looked for the days when we could be out of the "ECMO" room. It's funny, because even now, they refer to it as the ECMO room, even when there isn't anyone on ECMO in it.

Does the hosptial you have, employee a family support cordinator? for the NICU? I found it was really benificial to me, to mingle with the other NICU parents over lunch once a week. It was so nice.

You know, I think you hit the nail on the head... When you said that this has become "everyday" life for you.

Looking back, I think those days were so mushed together, and it seemed like once you walked into the NICU all time stopped, and it was a different world. Shift changes, and nurse boards and words I had never heard before. But.. over time, I did find a comfort in my new world. I hope you can too.

THe continuous up and downs are really hard.

I really do hope the trial off goes well. I will keep your beautiful one in my prayers, and Mom and Dad too.

The pictures are just lovely.

Jeanene said...

I've been following all your updates, and have enjoyed looking at Elizabeth's pics as well - so cute about the Nemo shirts :o) I'm glad to hear baby Drew is doing better and that surgery is over. I will continue to pray for him and your family and keep reading the updates. Hang in there - sounds like you are all very strong and handling things well. Drew and Elizabeth are both beautiful. I can't wait to hear that you are all home and on the road to recovery one day soon.(((((((HUGS)))))).


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