Written Thursday, April 25, 2019:
“We do not expect to travel through this wilderness exempt from its thorns and briers; but it is well when we feel Jesus is with us, and we can lean upon His arm, and often repose our weary heads upon His loving bosom, while He speaks to us and says, ‘Take courage! It is I. Don’t be afraid.'” ~ Mary Winslow (1774-1854)
So sorry I left everyone hanging again. Today turned out to be unexpectedly packed. We have quite a bit of good news but also some hard news from today’s surgery.
The good news first: Lilyan’s back continues to heal, and they let us come home after surgery this morning! Oh man! That was wonderful! In fact, they are planning to try doing surgical wound cleanings about twice a week now, but as an outpatient each time. As long as things continue to go well. Her surgeon commented that her tissue is gradually healing – at a pretty great rate, in fact – and, again, we are thankful for the good nutrition she has been getting through her Juice Plus capsules and the Juice Plus protein shakes. Protein has been proven to speed up the healing process, and these shakes make it easy for us to keep that going in healthy quantities, even though we aren’t able to put healthy meals together very often right now.
The bad news: There is still lots and lots of healing to go, and we’re still facing such challenges as we try to stay on top of the infection. Some of the bone at the site of the graft didn’t look great, so our surgeon took a piece of that for culturing, and it still showed quite a bit of yeast. It’s so, so hard to stay ahead of that yeast, and apparently, the E. coli is very aggressive, too. She said we are looking at “weeks,” of surgeries, and possibly even “months.” We can’t let ourselves go there, yet. We are being forced to live very much in the moment every minute of every day.
We have also realized in talking with our doctors that we have to continue in our long-term state of being mostly in quarantine. This has been very hard to accept after so many months of this. Lilyan’s body is just fighting so, so hard and is so compromised by all that’s going on inside of it, that we can’t risk exposing her to anything else that would require it to work any harder. She continues to run a fever about once a day, which shows us how hard her body is fighting. She has to be kept as healthy as possible for all of these surgeries and the required anesthesia, so we will be confined mostly to home except for appointments that we absolutely have to keep. Some of kids are pretty far overdue for some of their routine follow-ups with specialists, and we can’t postpone those any longer.
A number of other big things have been going on here that not many people know about.
Our son Colin, who was born at 26 weeks gestation (lost his vision due to retinopathy of prematurity) and adopted from Bolivia in 2000, seems to be having some fairly significant seizure activity. I would’ve said, before all of this, that he has never had seizures, but we are now thinking that it’s possible these have been going on for quite awhile as we look back and put some pieces in place. But during these many weeks of Lilyan’s hospitalization, things seem to have gotten worse and he has had some pretty concerning episodes here at the house, witnessed by the kids. He has no memory of any of them. The longest lasted about five minutes and happened right in the middle of a conversation he was having with a couple of his siblings. Once the episode ended, he picked up the conversation where he had left off, as if nothing had ever happened and had no memory of anything except the conversation. We have contacted our neurologist, but can’t get Colin in until May 16, and even scheduling anything right now is really hard because of Lilyan’s unpredictable surgery schedule. He seems stable for now and we are watching him very closely, but please pray that he will remain stable until we can get some answers.
Kathryn has been so healthy since her very serious problems all through late 2016 and most of 2017. But she had a pretty serious urinary tract infection while we were in ICU with Lilyan. With our daughter Kristie’s help, we were able to get that confirmed and treated, but she is having some problems again. We were able to get home from Lilyan’s surgery today early enough to get confirmation that Kathryn does not have another infection, but it seems that the Botox they injected into her bladder back in 2017 has worn off and will have to be repeated. This is a procedure that can be done as an outpatient, but does require a trip to the OR under anesthesia. We have testing and a clinic appointment scheduled over the next couple of weeks to start getting pieces in place for that as soon as possible.
We have had some regression with some challenging behaviors with one daughter in particular who is still working through the hard stuff that our kids come home with. This isn’t a surprise. In fact, the surprise is that she managed to hold things together as well as she has in the midst of these really, really hard past five weeks. Please pray for her heart. She is trying. Pray for us. We need wisdom and patience — both hard to find when we are so very tired and “used up.”
Lastly, our beloved dog Godfrey has caused us some worry. He is an older dog who is at least eleven or twelve years old, and he seemed to be showing some signs of possible congestive heart failure. These symptoms kind of came and went, and we couldn’t do anything about them because we were trapped at the hospital. Again, because we got home so early today, we were able to contact our vet and get him in for a check-up. We were very relieved to hear that his heart and lungs sound good. He did some blood work to test a few other things that might explain the symptoms we are seeing. But he also felt that it’s possible this is just Godfrey’s way of reacting to the anxiety caused by our coming and going. He is very attached to the two of us, but especially to me, and he hates it if I’m gone for any length of time. We knew he was an old dog when he came into our lives two-and-a-half years ago, and we knew that we might not have him for a long time. But in this place of such fatigue and heightened emotions, I just felt like I couldn’t bear losing this dog-love of mine right now. We are thankful that things seem to be stable for now. God cares even about these kinds of heart-pains.
We clearly know that we have so, so much to be thankful for. Most obvious is the fact that we didn’t have to plan a funeral for our little princess, Lilyan. Tears still come easily as we remember how close we came to losing her. We also know that she could be much sicker than she is, and we are so grateful to see her slowly healing and to be spending more time at home now. But honestly, parts of these past few weeks (months, actually) have been very, very hard. We really are so very tired.
But we truly have felt God’s presence by our sides through so much of the hard stuff. And we have experienced that rest that can only come from leaning upon His arm, and reposing our weary heads upon His loving bosom, hearing Him say to our hearts, “Take courage!” This is something that is impossible to explain, but it has kept us going when we thought we couldn’t take another step.
We have also been so blessed through so many of you. I’m so sorry I have not managed to answer your comments on my blog posts and Facebook posts, as I have longed to do. I haven’t even thanked most of you who have sent money to help offset some of the expenses for Scott’s and my food at the hospital, gift cards, meals, and money for feeding the kids at home, and cards and gifts that made Lilyan feel special. We are so very grateful.
The only picture I have tonight is of home.
I love this home of ours, and as we drove away this morning to take Lilyan back to the hospital, I looked back at it through the car windows, streaked with the dreary rain, and it just looked like such a beautiful haven to me. So this isn’t a good picture, but I love this house. I’m so glad to be here tonight where I spent the evening surrounded by my kids and dogs, and where I’m about to climb into my own bed.
Goodnight all! From our home to yours.