Wednesday, March 15, 2006


Drew is one week old today!

I apologize for not answering e-mails and all of that right now, just too much going on. Even though we only live about 30 minutes from the hospital, Raymond and I are currently staying on-site at night because we feel better being close. Raymond is telecommuting from the hospital as well. I'm with E. and a grandparent most of the day, oftentimes not at the house. We have dinner as a family at home every night but leave after putting E. to bed. In other words, we're not home that much. If you call, please leave a message but I can't guarantee you will get a call back. I just don't really want to talk right now. I can't stress enough how much I appreciate all of the thoughts and prayers for our family, I just tend to withdraw in difficult situations. This is my primary way of communicating and probably will be for a while.

Drew is hanging in there. His swelling is very slowly going down thanks to the lasix (sp?) he's getting. He has not had to have the procedure to insert a catheter in his abdomen to draw off the fluid as his kidney output has increased. Let's hope that remains, even though it's a minor surgical procedure, with him on such high doses of heparin, it becomes kind of major.

People have asked if we know the percentage of lung tissue that Drew has. Right now, the surgeon won't speculate on that. He wants to do surgery before stating anything definitively. His x-rays are still just kind of a mess.

We walked in on the team changing his ECMO pump yesterday--that was pretty nerve wracking. We knew to expect mechanical failures, but having to change everything out and take Drew off the machine was scary. The "pump was clotting," nothing at all to do with Drew. He spent all day yesterday and will spend today just kind of readjusting to everything since the pump change stressed him.

His oxygen was dropped from 40% to 30% yesterday and he's maintaining all of his sats fairly well, so that was a positive. The surgeon will try to wean him off of the nitric oxide tomorrow, he just doesn't want to add anymore stress so soon after the pump change.

Poor little guy has not had a bath since birth, he's just not been stable enough. And he's been having daily head ultrasounds to check for brain bleeds so his hair is pretty icky due to the gel they use. His nurse told us that this afternoon, we can help give him a sponge bath and put Aquaphor (lotion) on him!! Since we can't hold him, this is the next best thing.

He's still not in good shape or anywhere close to being taken off of ECMO so please continue to keep him in your thoughts and prayers.

Many people have asked about my recovery. I'm doing ok. My incision does not hurt and hasn't for quite a while. It's the rest of my abdomen that's hurting. The nerves are reconnecting and that doesn't feel too great. I know that I've pushed myself too far, too fast but so far, nothing bad has happened. I've been picking up E. even though I try to limit it. My doctor just said the general rule is, if it doesn't hurt, go ahead and do it. He did a very good job stitching me up, I don't think I'm going to have much of a scar at all. Anyway, I'm doing ok.


kctwinmommy said...

Jana, Raymond, & Ellie... just a note to know that we're following Drew's progress and continuing to pray for the best news to come. Glad to hear some things are stabalizing a little bit. And good to hear that your own recovery is doing OK, that you're at least able to monitor it well, and your doctor understands that you have to do certain things right now. Kira, Christian & I are sending you all (((((BIG HUGS))))) ~ Cindy

Lisa said...

I just wanted to let you know that baby Drew is in my prayers every night. You are so strong and brave, both Drew and Ellie are blessed to have you as a Mommy.

Big hugs to you and know we are thinking of you.

Lisa, Zach and Emily