We have some really disappointing updates to pass on, and are feeling more and more worried about our girl again now.

Kathryn was continuing to progress, in spite of the issues that kept popping up and setting us back with recovery and threatening to prolong our stay here at the hospital.

First there was the fever (resolved as she responded beautifully to the antibiotics prescribed for her infection); then there were her ongoing PICC line issues (resolved now after a couple of dressing changes and multiple pump adjustments); after that, we were faced with terrible diarrhea, caused by her new antibiotic (resolved now by the re-introduction of her probiotics and by changing her to a different IV-only antibiotic); and finally, there was her partially collapsed left lung (also resolved now, we think, as she’s cooperated like a champion with respiratory therapy).

Then late yesterday afternoon, we noticed that her incision seemed to be opening up in one place. As they have continued watching that, it has gradually opened more, and we are now seeing a couple of other places beginning to open up. This is of concern for a couple of reasons: 1) the risk of infection caused by the open wound, and 2) the risk that the entire incision could eventually open.

They started a treatment today called “wet-to-dry dressing.” Gauze that has been saturated with sterile saline is placed over the open portions of the wound, and then that is covered with layers of dry gauze. As the gauze dries, it draws the dead/decaying tissue up out of the wound, forcing it to heal from the inside out.

We will have to continue this treatment at home because it will take about two weeks to heal the wound. But they want to make sure it’s responding well before they let us leave here.

And then this evening, after such a wonderful day, we noticed that Kathryn was withdrawing more, becoming increasingly fragile emotionally, and feeling hot to the touch. Sure enough, her fever is climbing again. We are so worried about her now. They have ordered blood cultures and are going to culture the open wound to check for infection there.

We had hoped to maybe be released over the weekend, but it’s clear now that we have no idea when we will be leaving. Certainly not before Monday for sure.

In addition to our worries about Kathryn, I also start to worry about the other kids at home after so many days. Some of our younger ones begin to regress with some of their more challenging behaviors when we are away from them for too long. But it really is taking both of us to care for Kathryn here at the hospital, so we will press on.

Would you please pray for our kids back home — the younger ones and the older ones who are caring for them? We would really appreciate that.

And would you please pray that we can find the reason that Kathryn’s fever has returned, and also that her wound will heal?

Up to this point, Kathryn had been becoming more and more like herself every day. She was beginning to talk to us a little more each day, and we were seeing a few more smiles each day. I’m so sad to see her slipping away from us again. I can’t even describe how heartbreaking this is.

A very dear friend surprised us yesterday by ordering an amazing and very special meal to be delivered to us this evening via Uber Eats. I am sad tonight, and tired and discouraged. But God had already put the pieces in place for this special gift of love even before we knew any of this would happen. How like Him to reach down and breathe His love over our sad and tired hearts before we even asked.

Incredible dinner tonight (you can see how sick our girl is in the background)

We will try to hold onto this reminder of God’s love and sovereignty in the midst of the uncertainty and fear.

Here are a few pictures from the past couple of days, showing you how much progress Kathryn was making before these setbacks.

Blowing bubbles yesterday to help with the lung issues – using a special bubble blower loaned to her by her niece who has Down syndrome and understands how hard it can be to blow.

A new puppy named Chloe who loves to snuggle in Kathryn’s gorgeous hair.

Playing with Gel Clings just this morning, sent to her by friends while Bella and Chloe watch (see that awesome smile?)

Coloring with Magic Ink

Our sweet Kathryn shivering under blankets as her fever climbs again tonight.

One of my favorite pictures of Kathryn – ever! She was so happy and being silly with me yesterday. She thought it was so funny to get this picture of her amazing hair. I miss this girl’s smile so much.