Sometimes God sends us little unexpected gifts out of nowhere. He did that this afternoon.
All of our doctors talked together and decided that we can take Lilyan home for a little break this weekend! Even though she ran her typical 36-48 hour post-op pop-up fever at midnight last night. It’s a big deal to make this all happen because of her PICC line and her wound VAC, but everyone here knocked themselves out getting home supplies lined up insurance approval for everything. They really wanted Lilyan’s family all together for Easter. So sweet!
There are some stipulations:
- We have to back in on Monday for another surgery.
- We had to agree to get her straight to the ER for blood cultures if she runs any fever at all over the weekend because.
- Each team took turns stopping by to tell us, over and over again, just how precarious her whole situation is, how things could turn dangerous very quickly, and stressing all of the things we need to watch for.
But we feel like we have developed a much better understanding of what we are dealing with now as we’ve walked through these last two weeks.
So after we get our PICC line refresher course late this afternoon (it’s been few years since we went home with a PICC line in place), we will head home and meet another PICC nurse at our house so we can prove to her that we know what we’re doing.
It’s not much time together, but Lilyan will be able to dye eggs with her siblings tomorrow, do another little party tomorrow night (because having a party is always a good idea!) and we can all spend Easter together. We are indescribably grateful for this little break in the middle of this ongoing drama.
We don’t know anything past surgery on Monday. We’ll have to wait until we hear what they see during surgery that day before we know where plans go from there. We will return with packed bags, prepared for another stay here, and keep taking things one step at a time.
The kids have a meal coming to them Monday night, and some of you have asked if we need more. We will let you know as soon as we hear the plan after surgery that day. Thank you, thank you for even asking! Our hearts are full.
One new item for prayer. Scott has pulled a muscle in his back during all of the lifting of Lilyan over the past month. We need Dad in top-notch condition because this isn’t over yet, so please pray that some TLC at home this weekend, where we have older kids to help out, will provide healing time for his back.
Happy Easter to you all! It’s a beautiful weekend for the surprise of being able to celebrate together the most beautiful gift ever given to the children of God.
“No scene in sacred history ever gladdens the soul like Calvary’s tragedy. Light springs from the midday-midnight of Golgotha, and every herb of the field blooms sweetly beneath the shadow of the once accursed tree. In that place of thirst, grace hath dug a fountain which ever gusheth with waters pure as crystal, each drop capable of alleviating the woes of mankind. Thus Calvary yields us comfort rare and rich.
We never should have known Christ’s love in all its heights and depths if He had not died; nor could we guess the Father’s deep affection if He had not given His Son to die. The common mercies we enjoy all sing of love, just as the sea-shell, when we put it to our ears, whispers of the deep sea whence it came; but if we desire to hear the ocean itself, we must not look at every-day blessings, but at the transactions of the crucifixion.
He who would know love, let him retire to Calvary and see the Man of sorrows die.
~ Charles Spurgeon
“And when they had come to the place called Calvary, there they crucified Him.” Luke 23:33