Baby Maverick

A bad gas was the way the morning started. The vent rate was increased to 30. His white count was actually down a little (29), but he spiked a temp in the afternoon. Cultures were drawn, but I think it's probably just more of the same infection. All I can say is at least I was prepared. Dr. G had written auto-wean orders yesterday (to wean his rate by one breath every 6 hours) and normally I would be thrilled. However, yesterday I asked him to stop. I told him I knew he would get sicker after the line was pulled and was worried it would be too much for him. So he d/c'd (stopped) the auto-wean. I was expecting today to be worse than yesterday, because that's just how Maverick responds. I remember a day back in December when I went in to see Mav in the morning in Dallas and they had increased his vent rate by 2 breaths per minute and I started bawling. I guess I've just gotten to the point where I realize he needs support when he's sick and he'll wean when he feels better. Hopefully that will be in a few days. It's gotten to the point where I sometimes feel like an observer watching all that's going on, but hardly believing this is my life. I know that God is good and he doesn't give you more than you can handle, but come on now...

They are only getting CBC's (blood counts) on Mondays and Thursdays, so I won't be able to tell how he's doing number-wise until Thursday. That's always been something that's helped me feel better about his progress (or has made me apprehensive when it's not going down). So, I'll just keep a close eye on him (but I always do that, anyway) and pray for the best. Speaking of praying, thanks for your thoughts and prayers - whoever you all are. I know a lot of you, but I'm curious who some of you loyal readers are. There are places listed on the web-tracker that I've never been and don't know anyone who lives there. I'd love to hear from you - you can do an anonymous post and sign your name in the text (that way you don't have to create an account). If you want to keep your anonymity, that's fine, too. It seems like Mav has quite a few people pulling for him.

I was talking to one of my friends the other day and we got on a subject that I'd like to share. I just want people to know that we're not blind to this entire picture of what's going on with Maverick. I've done countless hours of research on all his conditions and have searched for treatments for them all. We're prepared for the battles we'll have to face knowing that much of his future is uncharted territory. No one has ever heard of a baby with PLE, no one has ever heard of a baby with critical illness polyneuromyopathy, no one knows why his kidneys quit working. All I know is God gave him to us for a reason. He knew his momma was a hard-headed find-the-answer optimist and his daddy was the perfect one to get him moving again. When I look in those big blue eyes (with the longest lashes I've ever seen), I know he's a fighter and he's here for a reason. He's a smart boy and knows who we are and knows what's going on around him. His nurse and respiratory therapist said he smiled at them the other day when they were retaping his tube (see, I'm not making it up), and he's getting more movement every day. It's him and God that keep me hopeful. One of the cardiologists asked me the other day if the GI doctor gave me a prognosis for the PLE. I respectfully told him, "No, but I didn't ask. I've done all the research on it, but the truth is any one's prognosis is just their educated guess and my educated guess is just as good as theirs because no one has seen it in a baby." Then I asked him "What chance of survival would you have given a baby to make it through all that Mav has been through?" He just smiled, nodded and said, "You're right."

When we found out we were expecting, the thought never entered my mind that we would have a baby with a heart defect - or any defect. I somehow thought I was immune to those types of issues since I took care of sick babies on a daily basis. What was the chance? To have a baby with a heart defect is one out of 125. To have a baby with TGA the prevalence is 20-30 per 100,000. When we met with Dr. Mendeloff before Maverick was born, I remember him telling us that the survival rate for arterial switch operations was 95% with the 5% mortality coming from difficult coronary artery anatomy. I know I didn't expect our baby to have a difficult coronary artery anatomy. My point to all of this is that statistics mean nothing to me now. For an individual, it's just as easy to be in the 5% as it is to be in the 95%. I haven't asked anyone statistics since that day.

Enough for tonight - more tomorrow. Love you all - jc

PS The memory on my phone is full. I need to delete some stuff so I can take some more pics and send them to the blog. I'll send one tomorrow.