Seriously February

Friday, February 24, 2017

I think next year I’m skipping February. Seriously, raise your hand if you’re with me on maybe taking a long trek through Europe or disappearing into some beautiful mountain country and pretending real life doesn’t exist? Ok you, you and you – let’s do it!

Yesterday was full of X-rays and ultrasounds and blood work and disappointment. None of the tests showed anything new wrong with her. Nothing.

The first night in the hospital she slept but they also wouldn’t let me use her TPN from home and they didn’t have it together enough to have some ready there for us (even though they knew we were coming). Then last night she had three pain episodes in the night so thanks to those of you that prayed she’d show it to them.

So, the consensus is that her GI track is continuing to fail and is now to the point of causing her pain, even with TPN and not even using her intestines or stomach. Crazy. The doctors are out of answers and out of ideas on how to try to make her better. So…. now Laila is being treated under the care of a palliative care team. They are working with us to try to get her pain under control and manageable so we can all get some sleep. This will be a trial and error process and we have no idea how long it will take to get the right cocktail of meds, if ever.

Since this process could take awhile and since they weren’t doing anything more for her than I do at home I asked to be discharged. I will manage her meds over the phone with our new team from home.

She is happy to be in her own bed tonight and hugging on her daddy :)

This was honestly something I hadn’t even considered. I figured I’d fight and get tests and they’d finally find something and we’d fix it. I hate masking pain but we have to comprehend this reality that she is not going to get better. There nothing left to do to make that GI system come back around. Sucks.

Isaiah 55:8-9 For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.