Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Wednesday, January 28, 2009

Just sleeping with his monkey

Ahwww, isn't he sweet? Well, sorry for no posts. I've been at the hospital since Monday morning. Those of you from Oklahoma know the weather here has been terrible - lots of sleet and ice. I just camped out at the hospital with little Mav. I'm back home now and it will be nice to sleep in my own bed. It's kind of hard to sleep up there. Greg told me when I left Monday to take some extra clothes just in case, and I'm glad he did.

So, we've had some good days. Maverick is now down to 10 on his ventilator rate! That's as low as they go. His pressure support is at 14/5. They usually wean by 2 to 10/5, then they'll start some volume support trials to see how he does before they pull the tube out. If all goes well, my conservative estimate for extubation is Monday. That's very conservative - it could be much sooner. We'll just have to see how the little guy does. He was pretty tired when I left today. I'm not sure they'll be able to do much more weaning today, but he may surprise me.

It really ended up for the best that I stayed in OKC with Mav for the past few days. God knew I needed to keep an eye on him. I was able to be with him constantly and figure out some of his little issues of late. A few days ago he had an episode where he started breathing fast and looked a little panicked. They increased his vent rate to 15 that day. Turns out he does that like clockwork 1-2 hours before his methadone dose is due. His methadone had been weaned from every 8 hours to every 6 and I guess he just didn't like that too much. They changed it back to every 6 hours today, so hopefully that will work better for him. He's on it because he was on the fentanyl (narcotic pain med) drip for awhile.

The nephrologist changed the dialysis volume to 100mls yesterday with two hour cycles. It was an attempt to get Mav a little closer to a home-friendly schedule for dialysis. It started yesterday evening. His gases last night and at 0400 this morning were worse and he was breathing fast, so Dr. Turman changed him back to the previous volume and his gas this afternoon was much better.

I spoke with a GI resident today about some of Maverick's feeding issues. They're supposed to come back tomorrow morning and hopefully have some better ideas for his feedings. Right now he's on continuous feedings, but over 1/3 of his feeding volume comes out through his NG tube. If the tube isn't in, then he vomits. His triglycerides have been high, too. So, we'll see what input they have tomorrow.

Mav's little bottom is still pretty raw and sore. We just keep trying new things to protect his little bottom as much as possible.

His white count is still high, but is coming down (20). His CRP is getting lower, too (4).

All in all - good news. Keep praying for no set-backs. We're getting closer! Love you all - jc

1 comment:

Anonymous said...

hi juli,
i'm glad to hear that maverick is making progress and improving daily. i know it must be a blessing to see improvement from one day to the next. i hope you will all be at home very soon. you are all in my prayers daily. we wish you all the best,
karlin and family