Let’s begin by saying it’s been a good but difficult day. We woke at Lebonheur to the nurse telling us we were ready to be discharged whenever we were ready. I realize they didn’t have to do extensive surgery but telling us were ready to go less than 12 hours after having her head cut open didn’t sit very comfortably with us. It felt like they realized they didn’t have the answer for her so we should just move on. Yet, there we sat, with a child that woke up even less responsive than yesterday, in need of care, unable to do so many things with out assistance, lethargic, feeling completely unequipped to care for her, and being told to just take her home.
Thankfully, our nurse was kind and told us we didn’t have to rush out. So, we emailed her St. Jude doctor and nurse practitioner and let them know our concerns. The were also very concerned by Kayleigh’s deteriorating condition and made plans for us to come straight tonSt. Jude and be admitted. At least that way they could monitor her, make sure she is comfortable, and help us get a handle on how best to take care of her.
The biggest shock of the day was being told that we needed to decide if we wanted to sign a DNI and DNR orders for Kayleigh. Do not intubate… do not resuscitate… it is not possible to describe the grief those words brought over us. Overwhelming, all encompassing, and completely debilitating. Neither Tim nor I could hold it together. That was one moment I was very thankful that Kayleigh slept so deeply. It was time for us to weep, and just hold on to each other.
We made our way to St. Jude by lunch time and they had us in a room before 2:00 pm. Given the situation we called in family to visit if they want to and had Grace and Cole brought over to be with us. I had a difficult discussion with both Grace and Cole to prepare them, not just for Kayleigh today but for what the future might hold. I don’t want them living in fear but I also don’t want them wondering what’s going on or wasting precious time they could have with Kayleigh.
This evening we had a lovely time with Tim’s parents, my parents and the kids. Kayleigh enjoyed having everyone here until about 8:00 pm where she promptly told everyone she was tired and they needed to go. Even with everything going on she’s still quite a funny little bird.
One thing we learned today is that it is possible that a medicine change that was made a few weeks ago could have been impeding one of the chemo meds. I can’t help but hope that now that we’ve changed the meds back, that it will start working again. Tomorrow we meet with her oncologist to discuss options. Please pray with us for the perfect doors to be open and for God to be the orchestrator of our plan.
2 Corinthians 3:5
It is not that we think we are qualified to do anything on our own. Our qualification comes from God.
Our devotion today was perfectly tailored to our needs. It is from Every Day In His Presence by Charles Stanley
