So we moved out of the PICU yesterday - and we had a bad day. She coughed and fussed all day I would have to say I was feeling a little discouraged after our great day Sunday. It felt like we had taken a giant step backwards - but that's where we for that moment, and all we could do was love our girl and give her has much comfort as we could, pray and stand on the knowledge and belief that this too would pass, and it did.
With some help of some medicine she slept overnight for 6 hours straight without coughing once. Today she has played and smiled. We got a big mat for the floor and she rolled around and grabbed for her toys (you know - papers). She hasn't done this since we were in China.
It is hard to not be moved by what we see, to doubt so quickly when our circumstances seem to turn to the negative. Our God doesn't change - He is our rock His promises remain no matter how our situation changes around us. This is a lesson I feel I am continually be tested on - when will I get.
I wanted to share about the next steps for Lily. We need to see her gain weight and get stronger. We are scheduled on September 2nd for her to get her cardiac cath, she will be sedated for this procedure. They are doing this to look for pulmonary hypertension, and subsequently to determine her risks for surgery. The plan is for her to receiver the Glenn procedure then in 2 years she will have surgery again. If she has severe pulmonary hypertension she will be unable to get the surgery, and we will have to consider other options - this would not be the optimal choice.
Right now we are just trying to take one day at a time
-first get her over this infection
-second have her gain weight
-third have the cardiac cath done
-fourth look at all our options
Today has been a good day. It brings joy to our hearts to see our girl more like herself.
Tonight I am going home to spend some much needed time with my other 3 precious kids - especially my boys who have been so understanding and so willing to share there momma with a sister the have not even had a chance to bond with yet. Chris will stay with lily tonight, I think he is looking forward to hanging with his girl - in China he was with her 24/7.
We are all longing for the day when will be under one roof again as a family, but for now this is our knew norm (although a temporary norm).
Got to run - lily just pulled her feeding tube out - she must be feeling better :).
1 comment:
Young or old, they love to pull those feeding tubes out as you know! LOL! Glad to hear she is having a better day and slept last night. So sorry she/you had a rough day yesterday. Glad you 2 get to flip flop tonight and spend time with the other kid/s. Our Lord is an awesome God. Thank you for sharing your heart and journey with us. We will continue to pray for Lily's healing, for you all and for peace for all and for guidance/wisdom for the health care team.
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