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 21, 2009

Frustration

Here's our precious boy today. His white count was up to 26 and he's had a fever. The culture from his ET tube (breathing tube) had a moderate growth of pseudomonas which is what he's on antibiotics for right now. His peak pressures on his ventilator are higher than they were in the past few days - in the 30's and he's needing a little more oxygen at times. His blood gases aren't quite as good either. All that said, I'm not a doctor, but I think his pseudomonas has become resistant to the ceftazadime. The problem is I'M NOT THE DOCTOR. No one here is convinced that's what the problem is, so they're waiting on the sensitivities to come back before they change his antibiotics. I understand this in theory, but this is OUR BABY. He doesn't have a big window of time where you can sit back and mull over the options. I just want them to give him the strong stuff now until the results come back. So, the doctors in the PICU turf the call to the infectious disease doctor who I'm told says that it would be unlikely the pseudomonas has become resistant to the ceftazadime. Ok - we're talking about Maverick here, and this has happened to him before. If I am wrong, I will post a formal apology here on the blog. I'm just so frustrated right now and that's the only thing that makes sense to me. I don't want him to get so sick that he starts getting edematous again, and has blood pressure issues again, and, and, and.

Enough about that - I have to throw in some good news. Focus on the good. His lymphocyte count is up to 4. I know that's not even close to normal, but it had been 1 or two the entire time we've been here. One of the problems with the PLE is that you lose lymphocytes - I guess through your stool. I'm encouraged that the number is starting to rise.

Well, enough for now. Hopefully the sensitivities will come back tomorrow. Keep saying your prayers. Love you all - jc

1 comment:

Dejah Quinn said...

still paraying for Maverick...I know it's hard but hang on!
Love ya!
Dej