Finally Something Different

On March 20th, we started a risky journey with Lilyan. We knew it would be scary, and we knew that it might be long. Yet this afternoon, 164 days later, we are still feeling like we almost can’t believe all that has happened.

164 days.

That’s almost half of a year.

I’ve said before that all these many weeks (23 1/2) have felt so much like the movie Groundhog Day. Day after day; week after week; month after month of the same thing. And these last few weeks have been so hard as Lilyan’s healing stalled awhile back, and we have seen virtually no changes in her wound during each of her weekly wound debridement surgeries.

But, finally, we have a new plan. It’s a scary plan, but at least it’s something different.

Although we know it’s not really true, we are tempted to say along with Bill Murray at the end of Groundhog Day,

Anything different is good.”

It feels almost like that, and the truth is, these new plans might turn out to be very good — exactly what we need to finally get us moving forward again and bring this long saga to an end.

But they could also result in setting us on a path that could reverse everything and send us back to the beginning.

All of the doctors involved in Lilyan’s case agree that there is no reason to continue what we are doing. It’s not working now.

So. New plans.

This coming Thursday morning, September 5th, Lilyan will go back into the OR with both her plastic surgeon and her spine surgeon. They will open up her back and do one more very thorough cleaning. They will also remove one small piece of the hardware. They feel (hope!) that this one piece, which is the most anatomically distal (from the spine  — closest to the skin surface), is part of what is causing her healing to have stalled. Their hope is that removing it will allow her body to finally heal completely.  Then to address what they continually refer to as “that deep place that won’t fill in,” they will add some Bone Morphogenetic Protein to hopefully promote bone growth that will bring the healing we need there.

Then they will close up everything.

This is the scary part.

If there is any lingering bacteria in the wound, or if any new bacteria should accidentally be introduced during this surgery, infection could begin growing again quickly, and could even cause us to end up back where we started.

The things we have going for us, though, are that everyone will be watching for any hints of infection. Our awesome Infectious Diseases team will be checking blood regularly to catch even the first sign that things are changing, and we will all be watching her incision for any signs of redness or opening.

We are a little scared, but we also agree that there is no other choice, and we know we have a great staff walking alongside Lilyan and watching out for her. And we are ready to move forward.

And just to keep things interesting, other medical issues have continued cropping up almost daily to the point that next week has turned into a medical nightmare.

Caelyn, who is eighteen now, had multiple major surgeries done throughout 2011. It was a really hard year for her. Last week, she suddenly began having some problems related to the work that was done back in 2011, and we ended up back in the hospital. Thankfully, they didn’t admit us overnight. They sent us home on a pretty grueling home treatment plan to hopefully stabilize things as they made more plans for her. It was determined that they needed to schedule a time in the OR to do a scope and gather more information about what’s going on inside her body, and tests also revealed that she has, once again, developed multiple stones in her bladder. This time a much greater number than ever before. These have to be removed asap. Everyone jumped into action and began making plans to have both of these procedures done at the same time, and as of yesterday, we have everything all lined up.

This is what next week looks like:

Monday: Another Rosenow moves out into his own place. Nathan will graduate from his Industrial Welding program at Butler Tech on Sept 9. He has been working full time as a welder for quite awhile and saving and planning, and it’s time for him to leave the nest. We are all feeling lots of “feels” about this step, but it’s good and right, and we celebrate this son’s next step into independence.

Tuesday: Appointment for one daughter that morning; appointments for two other daughters in the afternoon.

Kathryn and Shannen have had earaches for months (Shannen since June!), and no one can get the fluid out of their ears. It’s all very strange because they haven’t even had colds or allergy symptoms, but this fluid will not drain or resolve. We will see our ENT about where we should go from here.

Wednesday: It’s time for Jaden’s regular lengthening of the titanium rods in his back. That surgery will take place Wed, morning.

While Jaden is in surgery, a doctor involved with the scope Caelyn has to have done, will see her for a required pre-op appointment, and we are just praying that this appointment will move quickly enough that we can be back downstairs in time to talk to our spine surgeon after he finishes with Jaden. It will be a tight squeeze.

That afternoon, we will bring Jaden home and get him settled as he begins his recovery from this surgery. That usually takes about a week. Then we will dash out the door with Lilyan and take her to see her PT and our medical equipment guru for the first training session with her new high-tech wheelchair that was approved by insurance and delivered in Cincinnati much faster than anyone expected. If you’d like to know more about this amazing chair, you can look here.  It’s an awesome video.

We do have one problem, though. This chair weighs several hundred pounds, so there is no lifting it up a few steps into the front door like we do with the kids’ traditional wheelchairs. We must have a ramp into the front of the house. We are in the process of trying to get an estimate for having an attractive ramp built on the front of our house. Would you join us in praying for the needed funds to have this done as soon as possible?

Thursday: Scott, Caelyn, Lilyan, and I will all need to arrive at the hospital at about 5:30 am. Both girls will be in pre-op together, and then they will each go into separate OR’s with different teams for their surgeries. We expect each of these to last a couple of hours.

Once they are done, our daughter Robyn will head to the hospital (after she finishes running other critical errands for us that morning) to bring Caelyn home. Caelyn will have an abdominal drain in place as part of her recovery, and she will join Jaden as they spend the next week recovering together. We will have more info about future plans for Caelyn once we know what they find during her surgery and scope.

Scott, Lilyan, and I will be admitted, where we will all watch Lilyan very closely for a few days as they decide when it will be safe to send her home where we can continue watching for any signs of new infection. But we know that we will be in the hospital at least through the weekend.

For those of you who keep asking for a way to help, meals or food gift cards would still be so greatly appreciated as we tackle this next week. So many of you have saved us more times than you know with these kinds of gifts over these many months. I don’t know what we would’ve done without them. Thank you with all our hearts.

All through this, life has continued. I’ve miraculously been able to get some really productive school days in; and Kathryn has continued fighting with UTI’s (she now has her sixth one in six months); and we’ve continued looking for ways to keep fun and connection a part of our family life in spite of the isolation and monotony.

Here are a few pictures of life here over the past couple of weeks. Thank you for all of the love and prayers. We’ll let you know what we find out about everyone after all of the appointments and surgeries in the coming week.

Walk Around VOA Park 8-24-29 #1

During the cool snap last week, we took everyone out for a walk around the lake at VOA Park

Walk Around VOA Park 8-24-29 #2

Granddaughter Jhannel with her cattail

 

IMG_7665

One of our favorite family traditions, dating back about 35 years, is our evening reading time. “The Chronicles of Narnia” will always be one of our favorite series. It’s such a joy to introduce it to a new group of kids every few years, and this past week, we started it with our final group of kids. Our last first time. There’s definitely something kind of sad about that.

IMG_7691

We had Turkish Delight one night as part of our reading time. If you’ve read the Narnia books, you will know why this particular treat.

Surgery #25 (Week #23) - 8/28/19

Lilyan’s 25th surgery this past week.

33D7D64B-EE03-470A-9474-A52C62CCEB78

As I said earlier in this post, Nathan will be moving out to his own place on Monday. Scott just happened to walk past the little boys’ room last night and spot this heartwarming sight. On the nights when he doesn’t have class, Nathan often stops by their room to read to the youngest boys just before they go to bed. There are only a couple more opportunities for this now. Bittersweet.

 

One thought on “Finally Something Different

  1. Hi Kathy,

    Thank you so much for the update. This will really help us pray more specifically for your family.

    Is Dr. Sally Shott one of your ENTs at Children’s? She did Bethany & Juliet’s ear tubes back in the early 1990’s, after I rejected the first ENT I was sent to. The fluid behind B&J’s eardrum’s had solidified, so what they heard was muffled and they had a 6 mos. language delay.

    Dr. Shott was recommended by my friend whose baby daughter would stop breathing & turn blue. Only Dr. Shott was gentle enough to examine the baby’s throat without making her cry. She found that the baby’s epiglottis would flop over her glottis and block her breathing. When I googled Dr. Shott, she also has a special interest in children with Down Syndrome.

    Dr. Shott worked with me to try every antibiotic in the book before automatically saying, “They need tubes,” as the first ENT had done. Six months after the surgery, B&J went from being 6 mos behind to 9 mos. ahead in language development. We serve an awesome God. She later removed B&J’s tonsils because they were were giant like Marcus’ tonsils, and trapped lots of germs & infection. My tonsils are nice & petite.

    I know you have teams of doctors, but if you didn’t know her, I wanted to tell you about her.

    To end on a humorous note, back when we saw her, her son was 5 yrs old. When she asked him if he wanted to be a doctor when he grew up, he said, “No way! Being a doctor is for girls!” 😂

    We continue to pray for your family every night.

    Blessings, Kim

    On Sat, Aug 31, 2019 at 1:13 PM Where Love Learns Its Lessons wrote:

    > kmrosenow posted: “On March 20th, we started a risky journey with Lilyan. > We knew it would be scary, and we knew that it might be long. Yet this > afternoon, 164 days later, we are still feeling like we almost can’t > believe all that has happened. 164 days. That’s almost hal” >

    Like

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