I just wanted to post a little update to let everyone know how all of the kids’ surgeries, etc., went.
We were able to get Nathan moved into his new apartment on Monday, thanks to lots of help from his siblings.
Jaden’s rod lengthening on Wednesday went as expected. He came home early that afternoon, and has just rested and taken regular doses of Tylenol and Motrin to address his back pain. He is beginning to improve today, and he should be back to normal in a few more days.
Once we got him home and settled, Scott and I headed out with Lilyan to see her physical therapist and our medical equipment guru, Craig. We began the process of getting insurance approval and the constructing of her new amazing wheelchair months ago. We were shocked to get insurance approval with no battles at all, and much faster than we ever dreamed we would, and her new wheelchair arrived in Cincinnati two months ahead of schedule. We are still just completely blown away by the blessing of this chair and the ways it will change her life once she is healed. I’m attaching a couple of pictures and a couple of short, and not-great-quality, videos so you can see for yourself just how amazing it is.
Very early the next morning, we arrived at the hospital with Caelyn and Lilyan for their surgeries. That whole day turned out to be way more stressful and challenging than we ever thought it could, mostly due to trying to coordinate all of the pieces involved with doing two surgeries with four different teams while also trying to oversee Jaden’s pain control back home via texts with the kids. But I’ll spare you all of those details. I’ll just sum it up by saying that we got through it, and thanks to help from our daughter Robyn we managed to get Caelyn home and Lilyan settled in a room on A-3 North.
Caelyn’s surgery didn’t go exactly as planned. There were just so many stones in her bladder this time, and they were bigger and more difficult to remove than in the past. After her surgeon got about 70% of them out, her body temp dropped dangerously low. They tried to warm her up, but it didn’t change anything, so they finally had to just stop the surgery. Once they stopped the surgery, her temp began to slowly rise. She stayed really cold for a couple of hours after the surgery, even with multiple warmed blankets piled on her in recovery, but she gradually returned to normal.
They had a cancellation in their OR schedule for Monday, so Caelyn will return very early that morning so they can remove the remaining stones. They left an abdominal drain in place while they wait for that date. Nothing like this has ever happened with her before, and it was a disappointment, but we are so thankful that things turned around for her and that this cancellation opened up just when we needed it. She is very sore and also just resting and treating discomfort with analgesics.
Lilyan’s back is closed! And her wound VAC is gone! They removed that one small piece of hardware, as planned, and the hope is that, along with the bone protein they added inside her back, the removal of this piece will promote the elusive healing we keep waiting for. She is still not allowed to try crawling for a month, because her spine surgeon is a little concerned about the stability of her spinal fusion now that he’s removed that piece of hardware. He wants to see her again in a month, get a new X-ray, and decide if she can start using her upper body then. That will be almost 7 months of no upper body usage. I’m sure she has lost a lot of trunk strength, but we believe she will regain that in time. Her plastic surgeon wants to see her in two weeks to remove her dressing — unless we start to see drainage through the dressing, which would be a bad sign. And our ID doctors will check her blood weekly for any early signs of inflammation.
As we have said, her surgeons have all made it clear that this could result in her finally healing completely, or we could end up back where we started. But we are happy to be here now, and ready to walk this slightly-shifted path as we trust God to show us His plans for Lilyan and our family.
Once we were settled in Lilyan’s hospital room yesterday afternoon, we were surprised by the profound silence in the room. We hadn’t even realized just how much a part of our lives the sounds of that wound VAC had become over the past almost-six-months. It is wonderful not to have that attached to her body anymore.
And — wonderful news! — they let us come home! We are all home already as a family, and we are thrilled to all be together, caring for these three. And even though we don’t know for sure that her wound VAC is gone for good, it’s gone for now!!! So we have decided to have a little “Wound-VAC-Is-Gone” party! When we asked Lilyan what special treat she would like to have for her party tonight, she said Little Debbie Cakes. Haha! If I was told I could choose anything I wanted to celebrate a big moment in my life, I wouldn’t choose Little Debbie Cakes, but . . . it’s not my wound VAC that was removed. So, Little Debbie Cakes it will be.
Thanks so, so, so much for all of the gifts that have provided meals for our family this week (and even for a couple more days while we rest up and care for the ones recovering). This helps so much more than we can ever even make anyone understand.
We will keep you posted as the next few weeks pass and we see where things go with Lilyan.