Sorry I left everyone hanging again after our update on Friday night.

On Saturday morning, as Kathryn was waking up, she looked up at me and said in a strong voice, “Can you help me sit up?” It was a good beginning to what turned out to be a good day.

She was very close to her normal self all day. She was super excited to change from a hospital gown into one of her favorite nightshirts; she sat up in her wheelchair and played for much of the day; her youngest nephew visited and blew bubbles with her and danced for her to the sounds of the Moana soundtrack; and she put on her braces and reached that all-important milestone of standing for the first time post-operatively, with Daddy’s help.

Her much-loved Eeyore nightshirt

Coloring with Mommy

Trying to help her nephew learn to blow bubbles

Standing with Daddy’s help 

Late in the afternoon, she heard her urologist say that she might be able to go home on Monday as long as her fever didn’t come back. We sometimes forget how much Kathryn catches of what goes on around her. She turned to me, flashed this smile, and said, “Soon I sleep in my own bed.” Look at the way her eyes are glowing. If we had any doubt that she was missing home . . .

Then, the day got even better when they discontinued IV fluids and told her that her PICC could be disconnected from the pump except for her every-six-hour antibiotic infusion. She also caught this news and was overcome with joy, as you can see! She threw her now-freed right arm into the air and cried, “Mommy, look!”

No longer tethered to her IV pump!

Then we hit another little bump last night before bedtime. Her nurse came in to check her temperature, and it read 101.5. Kathryn was smiling and talking and showing no signs of being sick, so we were certain this was a mistake. We asked the nurse to check it again, and she did. It read 99.1, which is not considered a fever. Unfortunately, she recorded the first number in spite of the fact that we knew it was mistake. We went to bed not knowing where this would take things

This morning, Kathryn woke up, and one of the first things she said was, “Tonight my last night here.” (She is somehow actually keeping track of what day it is and when she is supposedly going to leave!) We told her maybe, but she insisted that it would be tomorrow.

Then her incision was uncovered for a check. And it looked even worse. It actually looks really terrible. So terrible that I won’t post a picture.

We talked to the urologist on call today, and he assured us that this would not keep us here, but that the “fever” from last night might. We will have to see what the Infectious Disease Team says tomorrow. They will make that call.

As far as her incision, we have made the decision to request a consult with Wound Care. We went through this with Nathan last year, and after many months, we finally consulted with Wound Care. They were able to heal the wound in a few weeks. We don’t want to wait so long this time, now that we know what kinds of things Wound Care is able to do. However, we are seeing, one more time, what a tricky thing hospital politics can be. We are meeting some resistance concerning this decision, so would you please pray that everyone will listen to what we have to say, and that the best decision can be made for Kathryn without damaging any relationships with those who care for our kids. We have great respect for our children’s doctors, and we also have some experience with how delicate things like this can be (even though this should not be the case.) But we also know that our children’s needs will always be our first priority. We will know more tomorrow.

In the midst of these simmering frustrations, Kathryn has been super excited all day and kept telling everyone, “I see my house tomorrow.” “I sleep in my bed tomorrow.” “I use my own toothbrush tomorrow.” Etc. We have given up adding the maybe. 

God loves child-like faith. This doesn’t mean that we always get what we ask for, but it does mean that we trust that He wants to hear our hearts’ desires; that He loves to answer our prayers; that we can always trust Him to make the best decision for us; and that we rest peacefully and like a child in His arms.

As we wait for a definite discharge plan, I thought this seemed like a very good quote. Our prayer is that we won’t ever waste any of the minutes of our lives, no matter where God places us.

“Whenever God puts is in any place, He does so intelligently, with some purpose of good for us. We should be satisfied that we are never in our place by accident, but that God has placed us where we are for some good reason. He is always setting us lessons to learn. The lessons are not always easy, either; sometimes they are very hard. But if we accept the divine teaching and take up the duties which He gives to us in our hard place, we shall always find the best blessing and the sweetest comfort. While we cannot, therefore, change the life conditions or circumstances of our lives, we can sometimes work a little more bravely, live a little more sweetly in the hard conditions.”
J. R. Miller (1840-1912)

I’ll close with a few sweet pictures from our good day today. We don’t know what tomorrow holds. Our kids at home are really struggling hard, as of tonight. We believe we need to be with them, and that Kathryn needs to be home again. We feel that she is in a place emotionally that will prevent her from healing any further physically if we don’t go home. We are asking God to bring us home tomorrow. But if He doesn’t, we will still trust Him. He always has a plan; that plan is always for our good. We will be deeply disappointed, but we will look to Him to get through that disappointment and believe that He has some reason for keeping us here.

Kathryn loves her balloons

A friend sent Kathryn a card with some money to use in the hospital gift shop. She was very much up to this outing today, and chose this baby doll and bottle.