*Written Wednesday, April 10, 2019:

“Do not expect that God will ever permit you to live by sight. If in the course of your wilderness journeyings, He has brought you into great difficulty, yes, to the very margin of the sea, still, at His bidding, ‘Go forward,” though it be into that sea. Trust Him to cleave asunder its waters, making a dry passage for your feet, and causing those very waves which threatened to engulf you, now to prove as cloud, canopying you above, and as walls of strength fencing you in on every side.”
~ Octavius Winslow (1808-1878)

Today has been a little stressful as we have all tried interpret the sometimes-confusing signals Lilyan’s body is sending.

Last night, after I posted my update, Lilyan very suddenly became much sicker. Her temperature went up again, and she was in tears because of a bad headache. Her heart rate and respiration were both very high, and her blood pressure began to drop a bit. For the first time since this setback started eight days ago, she acted like a very sick little girl.

Getting sicker

This morning she seemed better, although she still had what I call “sick baby eyes” all day. She said she felt okay, although she told us multiple times that she was “really, really tired.” She ate and drank normally, her heart rate, respiration, and blood pressure looked good, and her fever stayed down. But just before noon, her heart rate and respiration began to climb again, and she just started to look sicker to me again. She ate lunch and said she was just really tired, but everyone was pretty concerned about the numbers on her monitor.  Because there was no fever, this was all mysterious to everyone caring for her.

By about 4:30 this afternoon, her temperature was back up again, and her numbers still looked bad, her headache was back, and for the first time, she said she didn’t feel like eating anything for supper tonight. This is not a good picture, but it at least is one that makes sense.

Here’s what we know for now and where things stand at the moment:

• She definitely has an infection in her spine incision. They believe it happened either during surgery, or soon after. This is also probably why the incision began opening up last Tuesday.
• They have identified the bacteria but don’t yet have sensitivities, which means they don’t know, for sure, which antibiotic is best for fighting this.
• She also appears to have a urinary tract infection, but we’re waiting on confirmation of that.
• The plan at the moment is to take her back into surgery on Saturday and take a look at the wound, possibly clean it out again, and change the wound VAC dressing, But we have also been told that, if her fever should go back up again today (as it has now), they might take her in sooner than Saturday. There is still no talk of when she can go home, but certainly not until that surgery is done, and not until this infection is responding better than what we’re seeing now.
• They are going to take more blood this evening to culture that again and make sure she is not becoming septic.

As of about an hour or so ago, her left foot and lower leg have started swelling. She needs extra fluids because of the fever and infection, but we have vivid memories of the terrible swelling her body had to fight while in ICU, so we are a little worried about finding the right balance for her body, which seems to be sensitive to extra fluids. Specific prayers about that would be great.

We don’t like the unknowns, and we don’t like the open-ended-ness of this hospital stay. It’s hard on Lilyan, hard on the kids at home, and honestly, hard for us, too. It was especially hard today as our Robyn turned twenty-one. We will celebrate later, but the kids at home have done their best to make her feel just how loved and special she is today.

Some pampering for our new 21-year-old

But even though we don’t much like the path we’re on right now, we don’t have any choice about that at the moment. So we will continue moving forward one step at a time, drawing our strength from the One guiding our steps and “canopying” us.

Today’s high point: My dear friend Sue who has been doing some art classes/projects with the kids at home, helped them make an amazing gift for Lilyan, and our oldest daughter, Kristie, delivered that to the hospital for her this afternoon.

They all made hand-heart art for her.

How incredibly fitting that it would be delivered to her today — on National Sibling Day.

I love this so much! And seeing my “babies'” hands sure makes me miss all of them.

If you zoom in, you can see each sib’s name

Hanging on her hospital wall where she can see it from her bed

Lastly, we now have meals through Sunday for the kids at home. Thank you, thank you all who are helping us in such tangible ways. We feel your love!

Will continue to update as we know more.