Hope we get some answers today

Since my last post on Monday not much has changed. Mila is not making any progress.  If anything things are going downhill. Her pain is increasing and she's to the point where she doesn't want us to touch her or even hold her hand. I know along with the doctors she needs time to heal however it's obvious something isn't right.

Her surgeon talked with us yesterday (tues) and decided to do another CT scan. Even though it was clear just the other day, things like hydrocephalus don't always show on these scans and things can change pretty quick. He also decided to do a spinal tap. As much as I hate to put Mila through any more, I knew this was coming based on Mila's condition and actually thought it would take some convincing to get the doctors to press more and do these test but I didn't have to. All of Mila's doctors, nurses, team of surgeons and epilepsy team agree that this needs to be looked into and it's time that we get some answers. 

The Surgeon is doing the spinal tap to check for infections, mainly aseptic meningitis. She doesn't have all the symptoms of this but I'm relieved to get the test done even if just to rule some things out. The surgeon thinks Mila has some blood and fluid build up and hoping this will also relieve a little bit of pressure. 

Another doctor that's been keeping a close eye listened to my concerns and agreed that she needed better pain management. They've tried different pain meds and some work a tiny bit or for a short period of time but Mila moans in pain most of the day. It was getting pretty bad yesterday and luckily he came in during a time she couldn't take it anymore. He decided to start giving her small amounts of Valium to relax her muscles and settle her down a bit. I felt like that's exactly what she needed. She doesn't want her neck to be touched at all and doesn't want to move her head plus she's in agony and irritable. It has worked so far and we all finally got a little bit of sleep. Rick and I are trying to convince them to give us some everytime she gets some. ;) 

In addition to all of this poor Mila has been poked for blood work and ivs so many times we've lost count. The last time being at midnight last night. It's never fun but it's always that much worse when we have to do it in the middle of the night. The time before that it took 3 times (again) before they could get it. It's torture, my heart breaks everytime. Please pray we find answers soon because Rick and I know Mila can't take much more.

We will update you with results when we can. Once again thank you #teammightymila, I just can't say it enough!!!