Painful progress

Well we have made it 48 hours post surgery and everyone is mostly pleased with the progress of little G, cardiac-wise. 

On Saturday, her face acquired some new battle scars - minor surface abrasions because she is a stealthy quick little monkey and ripped the oxygen cannula right off her face taking the top few layers of skin with it. Of course she did. Then she had an odd reaction to a medicine called Thorazine which caused rigid muscle tightening in her shoulders and neck. It looked very scary but some benedryl helped in a hurry. 

I'm learning that her stats are all a delicate house of cards and rebuilding is sketchy after the cards fall. The benedryl slowed her heart rate but we need her heart rate high so her blood pressure stays high and pumps all her blood and fluid the way it should. The weaning of the sedatives helps her be more alert but it also makes her alert enough to be royally ticked off at her current state of affairs. Her temperature climbing affects her respiratory rate which affects her oxygen and so  that has to be tweaked and then there's her funky trachea to make everything even more crazy. 

I'm also learning what it means when they say "practice medicine". It's especially obvious during the night when there's a pulmonary specialist, a respiratory specialist, and an a still learning cardiologist standing in a trio staring at the monitor looking dazed and confused at 1, 3:30, & 4:45 am. Meanwhile our awesome nurse and I exchange looks of "anybody got a idea here? Seriously..." So they try something and then hours later a full grown doctor mentions "yeah that wasn't a good move". 

Grrrrr....

Then they try something else. This time it's a painful something else that "should" work. Except it doesn't. 

Next, in order to cope and not react poorly after three sleepless nights - I start to envision them was Larry, Curley, and Moe. This was around 5:45 after the last idea failed. Oh, and meanwhile her temperature was heading toward 104. 

Finally comes in a grown up doctor who tells me "She has pneumonia. She will always have chronic lung disease. Her trachea won't ever be in good shape. This will set her recovery back days."  

An hour later an equally grown up doctor comes in and says: "I'm confident it's not pneumonia. She has fluid around her lung. It's common after surgery. This will resolve - she will be fine." 

A half hour late, the surgical PA decides to come and visit and says "hey! Her chest tube is hardly draining and we'd like to take it out since she's doing so well". 

That's when I ask if someone has sedated me and I'm on a bad trip. For real. 

You see, they all have a song. One sings one song - another sings a totally different song and I'm standing there spinning wondering who is singing the song I need to listen to. 

None of them. That's my final answer. 

So, I demanded to hold my baby and we had a little church in her room and sang our way through my worship play list. The song I need to listen to is God's song. Songs like:

"You hold my every moment, you calm my raging seas. You walk with me through fire and heal all my disease, I trust in you. I believe you're my healer. I believe you are all I need. I believe you're my portion. I believe you're more than enough for me, Jesus you're all I need. Nothing is impossible for you, you hold my world in your hands." (Healer - Kari Jobe)

I also decided that I need to come up with maybe a more polite way to say what I really want to say to the "team" of people practicing medicine on my daughter. Here's what I'm feeling today:

 "I know you all think you know what's what. Here's what I know: each of you need to slow your roll, put your gigantic egoistical God complex in he back seat, go grab a healthy dose of humility and find people more experienced than you -wherever they may be and decide on a plan. One plan. One working plan. I don't even care which plan it is. Pick a plan and make it work. Fix this baby.  Or else I'm going to start googling and come up with one myself while you each work against each other and this child pays the price. She's been through enough."

Whatcha think? I'm open for suggestions. I'm sure many who have walked this road know what I'm saying and are saying a big fat AMEN. 

They are kind, they are gentle, I believe they are doing the very best they can. Little G is a huge mystery in a very tiny package. She's is in the exact place she's meant to be and so am I. So while I vent - it's mostly for my own sanity's sake and for our mutual humor because laughing is the best medicine. 

Please continue to pray that she turns the corner and drains, is fever free, and can start ridding her body of tubes and lines. She needs to laugh too and I really miss her laugh. 

I really really miss her laugh.