*Written Sunday, April 14, 2019:

“You needn’t worry about not feeling brave. Our Lord didn’t – see the scene in Gethsemane. How thankful I am that when God became man He did not choose to become a man of iron nerves; that would not have helped weaklings like you and me nearly so much.” ~ Letters of C.S. Lewis (1953)

Lilyan’s “fever-free-ness” lasted thirty-six hours! We were so thankful, but we were also sad when she began to run fever again around midnight last night. She is fighting a serious infection in her back, so I know we shouldn’t be surprised. But it was still a disappointment.

The good news is that it was only a fever — no headache, no elevated heart rate or respiration, no chills. And the fever wasn’t as high, and it responded pretty quickly to Motrin. So it’s safe to say that improvement continues.

And that was confirmed in surgery today.

We all got up really early this morning since we didn’t know what time they would be coming to take her to surgery. After we got ready, we waited for Transport and went back to our coloring with Mr. Sinatra serenading us in the background.

When they did come for us a little after 7:30 am, Lilyan chose Alistair as her surgery buddy today. He has never been to surgery, yet, and he was pretty excited. Lilyan was not, but as usual, she was very brave and sweet.

Alistair, would you like to come to surgery with me today?

Waiting for her Versed – again

After the procedure, our plastic surgeon spent some time talking to us. It was pretty much all good news. She said that things looked much better inside Lilyan’s back this time, and that she saw the happy sight of a lot of granulation tissue (“new connective tissue and tiny blood vessels that form on the surfaces of a wound during the healing process”).

Also, she said that the bone grafts done during the surgery three-and-a-half weeks ago also looked really good. Things looked so good, in fact, that there was no need for another wound culture, and she even began the process of closing up the wound just a bit.

The wound VAC is still in place, but she wants to take her back to surgery on Wednesday or Thursday, and if (if) things have continued to heal this well, she hopes to actually remove the wound VAC, close the wound completely, and after a couple more days here, send us home with one small drain in place and probably a PICC line for “long-term” antibiotics. (She did not elaborate on her idea of “long-term.”)

Everyone here keeps telling us that this is pretty surprising; our understanding is that they were expecting several weeks of the wound VAC and wound cleanings, and then another surgery somewhere down the road to close the wound. That seems to be the more typical healing timetable for wound infections like this one. We are so, so grateful for all of the prayers that have been said for our little girl, and we also feel like the Juice Plus products we have been using for our family over the past three years have to be, at least partly, responsible for this healing that seems to be faster than expected. These products insured that Lilyan was in optimal nutritional health going into this surgery, and we already know that they have been proven to improve the immune system’s ability to fight infection and inflammation in the body.

While we are truly thrilled with the scenario we seem to be facing, compared to the one that everyone, including us, seems to have expected, we are also very, very tired. Our kids are nearing the end of their limit to keep holding things together back at the house. I still have more school I need to get finished before the end of this school year. And at this moment even six of seven more days here sounds like a really long time. Our bones and muscles are screaming at the thought of so many more nights of sleeping on this parent sleeper. If we manage to go home next weekend, that will mean that we will have spent twenty-three of the last thirty-two days in the hospital. We do feel like such weaklings right now and not at all brave about this next week we are looking at. But as we face the probability that we will be coming home from the hospital over Easter weekend instead of finally returning to church on Easter Sunday as we had hoped, the quote at the beginning of this blog is encouraging. God will continue walking this road with us and with our kids in spite of our tired hearts and bodies. Jesus knows and understands our lack of courage.

So we will keep doing our best to do this one day at a time, trusting God for the strength we don’t have within ourselves. We will remain here on A3-N for the coming days, hopefully healing more until the next surgery. Then we should know more and can pass that news on to you.

If you are one of those who has asked about a way to help, we can tell you that we will need about three or four more meals now for the kids at home, based on what we know at the moment. Please let us know if you can help with this in any way. Thank you so much to all who have already stepped up to help us this way during this long adventure. We are so grateful.

After Lilyan’s head had cleared from the morning’s anesthesia, she had some special visitors.

A few siblings and one niece headed to the hospital

Lilyan was so much more able to enjoy her visitors today than she was earlier this week when she had fever. They brought her a huge book of Highlights Hidden Pictures, and a Minnie Mouse doll. (I love Michael’s curious little face peeking out from under the tray.)

We ended the afternoon with a good hair-washing, thanks to the help of one of our favorite nurses. And a manicure, which loved more than the hair-washing. Doesn’t she look amazing tonight?

We hope to know more tomorrow about the other bacteria they found growing in her wound during Friday’s clean-out, and maybe a few more details about what our daily routine will look like once we do get to go home. And I guess we will color some more. Thank you all so much for the continued prayers.