*Written Monday, April 8, 2019:
Lilyan is suddenly and unexpectedly back in the hospital and will be going back into surgery tomorrow morning. This is definitely not what we wanted. We were warned, though, to be prepared for such things, so we weren’t caught totally off-guard.
I’ll quickly update things since her homecoming and then share details about what’s going on now.
Lilyan did come home on March 29 as we hoped she would, and it was such a happy day. Everyone was so thrilled to be together again. The kids worked hard to get ready for her homecoming, and then the next day, they decorated the house for a big party. She wanted to watch Mary Poppins Returns and eat doughnuts for her homecoming party. So we all made it happen. Here are a few pictures of those first couple of days.
Over the next few days, surprises arrived in the mail for Lilyan as people poured out love for our girl. She also got a letter and a picture drawn for her by a little girl named Willow, but somehow we didn’t get a picture of that one.
Then last Tuesday, we noticed that her incision was opening in a few places. We took a quick trip back to the hospital to see our plastic surgery team, and they sent us home with supplies and instructions for caring for her incision. We were comfortable with this because we went through something similar with Kathryn after her bladder reconstruction surgery when her abdominal incision opened up pretty badly.
Unfortunately, though, things began looking much worse over the weekend, and then last night, Lilyan began running a pretty high fever. We contacted our spine surgeon and our plastic surgeon this morning, and they made the decision to have us bring her back to the hospital, knowing they would need to take her back to surgery.
There have been a number of discussions throughout the day about what will happen now. Surgery tonight or surgery tomorrow? How many days in the hospital? Exactly what would happen when they did do surgery?
It’s still a little up in the air, but we did get a few decisions made tonight. Surgery will not be tonight for sure, but is scheduled for tomorrow morning with her spine surgeon. Other details we won’t know until they get her into surgery tomorrow and get a good look at what’s going on inside the gaping wound on her back. They will also start a culture from this wound to try to determine where this fever is coming from. That fever has continued throughout the day. She also has developed a new cough, so that is being watched closely, too, and they started a blood culture today, as well.
The most probable plan at this point is that they will do some some irrigation and some debridement of the wound in the OR tomorrow, then leave it open with a wound VAC in place. (“A wound VAC – vacuum assisted closure – is a device which allows people to conduct negative pressure wound therapy (NPWT). The device consists of a dressing which is fitted with a tube and attached to the wound VAC. Negative pressure wound therapy is most commonly used with chronic wounds which are not responding to other forms of treatment, and sometimes with surgical wounds which have reopened.”)
This would be used until she is stable and they feel enough healing has taken place for her plastic surgeon to take her back into the OR a third time and try to find a way to more successfully close this wound.
There is some discussion about whether we have to stay here the whole time, or whether we can go home with the wound VAC and return for the third surgery. They are pretty protective of her and not willing to do anything that might be at all risky. So we will have to see what they decide after tomorrow’s surgery.
They will take her in at 9:15 tomorrow morning and expect it to take 2-3 hours. We’ll update when we know more.
We are so, so thankful for dear friends who are, once again, coming to our rescue. We have three friends lined up to provide meals for the kids at home for the next three nights, and one dear friend brought craft supplies to our house today to keep the kids distracted for the next couple of days.
There were a number of tears and many sad, worried faces when we told everyone that Lilyan had to come back to the hospital. Please pray for our kids. Our older ones are getting tired, and our younger ones miss us and the normal stability of life. The older ones carried a pretty big load during and after Lilyan’s surgery, and we have since spent the past 10 days working on our seasonal clothes switch-out, which means no rest for anyone.
Lilyan was initially devastated when she heard the news. This picture shows her heart most clearly. Her first words were that she didn’t want to leave “the kids” again, and next, she said she was scared to have surgery again. It really was almost more than she could face at first, and she closed her eyes and tried to find the strength she needed to press on.
After a little while, she and her baby hippo, Tina, were ready. So we are here now, and after an IV stick that took three VAT nurses, and then finally two PICC nurses a full hour, she is finally settling in for the night to wait for her surgery in the morning.
We will update again tomorrow. Thank you for all of the love and prayers.