It’s Today

Written Tuesday, April 23, 2019:

Winnie the Pooh: Christopher Robin, what day is it?
Christopher Robin: It’s today.
Winnie the Pooh: Oh, my favorite day. Yesterday, when it was tomorrow, it was too much day for me.

So although it didn’t go exactly like we had hoped, we did get home for part of Easter weekend. The very beginning was super bumpy, and we were way, way too tired to cope with it well. It went like this:

We didn’t manage to finally arrive home Friday until about 6:30 that evening, and within about fifteen minutes, Lilyan was running fever again. We came through the door, kissed the tops of all our little ones’ heads, said quick hellos to the older ones, tried to assess Lilyan’s condition,  and then our home nurse was at the door for our final PICC line refresher course.

The fever continued to climb a bit, and at that point, our fatigue was so great that we just couldn’t bear the thought of having to take her back in to the hospital again immediately.

The good news was that we had a nurse in the house so they allowed her to just assess things there and determine that Lilyan’s back wound and her PICC line were both fine.

The bad news is that all of this took hours, and this very kind and patient nurse didn’t leave our house until close to 9:30. So we never really even got to talk to our kids at all that night, and we were up until close to 1:00 am getting Lilyan all settled and completing her final antibiotic dose, which had to be done through her PICC line.

In the middle of the disappointment that we had completely lost our first evening as a family, and the mental and emotional fog resulting from our fatigue, the world felt very black and the future looked really hopeless. I remember my weary, cloudy brain processing on some level that I shouldn’t pay too much attention to those feelings under the circumstances, but when we finally fell into bed and drifted off to sleep, I didn’t see how I could muster the energy to do one more day. And especially not with an upbeat attitude for our watching weary and needy kids.

But that was Friday. Lilyan’s fever went down that night and stayed down all through Saturday.

And Saturday was a wonderful day filled with healing and laughing and hugs and connection and fun.

I’ll wait and let the pictures below tell that story more fully in a minute, but we ended that night with pizza and a movie – “Christopher Robin,” starring Ewan McGregor. At one point near the end of the movie, Winnie the Pooh and Christopher Robin have a little conversation. That’s where my opening quote is from. And it struck me, during those lines of the movie, that this was exactly how I had felt on Friday — before Saturday had become today. It was just too much for me, but I had no idea what a wonderful day was waiting for us once Saturday became today.

And then I thought about Jesus’s disciples as they moved through that sad weekend after their dear friend — their Lord — had been so brutally killed. The future was just too much to even think about because they didn’t understand how the whole world was about to change when Sunday came. And it all seemed, somehow, so poignant to me in that moment. In front of our TV. Surrounded by my precious, precious family. Listening to Winnie the Pooh speak words of wisdom.

Sunday was also a wonderful day. Well . . . initially anyway.

There was no way for me to pull together our typical Easter dinner this year, so, after a warm and intimate Easter worship service in our family room, we chose to use a generous and unexpected gift from dear friends to order Chinese to be delivered to our door.  It’s probably not an Easter dinner we’ll ever forget.

Sadly, as we were eating our dinner, Lilyan complained of a headache and just generally not feeling well. We checked her temperature, which was 103º, quickly repacked our only-partially-unpacked bags, and headed to the Emergency Department at Children’s. We were still very, very tired, and definitely disappointed that our time together had been cut short. But we were also feeling refreshed in spite of still being tired, and the main thing we all kept feeling was thankful. We were all so grateful that we had been able to have those very special times together before having to head back to what is beginning to feel like a home away from home.

After sitting in an exam room in the ER for four and a half hours, they finally admitted us, and there were some familiar faces waiting to greet us on A-3 North.

Once again, Lilyan’s fever came down with Motrin and Tylenol, and stayed down all night. She had surgery the next morning (Monday, April 22). Although everyone expected, after Sunday’s high fever, for things to look a bit yucky inside her back again, it looked surprisingly good. Not good enough to close the wound, but also not bad enough to explain the high fever.

There have been a couple more fevers since then, lots and lots (and LOTS!) of back and forth discussions between the teams caring for her, but the bottom line is this

  • All players involved in her care are completely perplexed about these random bouts of fever, but they have checked and re-checked everything they know to check for now.
  • Everyone is a bit nervous about the fevers because of how critical it is to protect the hardware in her back, but agree that she is healthy and normal in between the bouts of fever and that her back looks relatively good at this point.
  • She is scheduled for another wound clean-out in the OR on Thursday.
  • Because they know that we will watch her closely, that the Liberty Children’s campus is only ten minutes from our house in case of an emergency, and that we will get her in immediately if she should ever have a fever that doesn’t come down with the combination of Tylenol and Motrin, they have agreed to let us go back home and monitor things from there. We should be leaving sometime this afternoon.
  • We will come back on Thursday for surgery, more bloodwork, and close reassessment of everything.

We will try to post an update after surgery on Thursday. For now, though, the (many) pictures and captions below paint a much better picture of how great our day-and-a-half was at home for Easter weekend.

Lilyan Home for Easter Weekend #1

An exhausted and feverish Lilyan patiently waiting while our kind home nurse cared for her PICC line Friday night when what we all really wanted was to just spend time together.

Lilyan Home for Easter Weekend #2

Saturday morning dawned with new hope and energy, and we all enjoyed some egg decorating, using a whole new method that involves Cool Whip and food coloring.

Lilyan Home for Easter Weekend #3

Kathryn was so, so happy to have the whole family together again for awhile

Lilyan Home for Easter Weekend #4

Granddaughter Jhannel thought this new way of doing eggs was so great because it’s also tasty

Lilyan Home for Easter Weekend #5

Lots of cute pictures of all of the kids, but I’ll limit it to these few. I thought this one of Nolan was super cute

Lilyan Home for Easter Weekend #6

Success!

Lilyan Home for Easter Weekend #7

Our Saturday evening viewing of “Christopher Robin.”

Lilyan Home for Easter Weekend #8

After the younger ones were in bed Saturday night, the older ones helped fill the eggs for hiding the next day, and . . .

Lilyan Home for Easter Weekend #9

. . . helped us fill baskets for morning

Lilyan Home for Easter Weekend #10

Once ALL of the kids were in bed, Scott and I got the table ready for morning. This included boxes of very special chocolate for our awesome older kids, along with the baskets for the eight youngest

Lilyan Home for Easter Weekend #11

Sunday morning, and here they come!

Lilyan Home for Easter Weekend #12

Lilyan was so, so happy to be home for this!

Lilyan Home for Easter Weekend #14

After our home worship service, Lilyan got a good hair-washing, followed by some sister-love from sisters who have missed her so much.

Lilyan Home for Easter Weekend #15

Then it was time for an indoor egg hunt since it was so muddy outside. We learned, from a friend, of this great idea for children in wheelchairs. Helium balloons tied to eggs make it possible for kids in wheelchairs to grab the balloon strings and get their own eggs. Owen and Jaden opted to crawl through the house looking for harder-to-find eggs, but this was great for Kathryn and Lilyan.

Lilyan Home for Easter Weekend #16

Pure chaos reined for awhile as they all hunted for eggs, some of which had been hidden in some pretty creative places by our older kids.

 

Those sneaky sibs even used tape sometimes!

Lilyan Home for Easter Weekend #16

More “hidden” eggs with balloons

Lilyan Home for Easter Weekend #17

Jhannel had so much fun

Lilyan Home for Easter Weekend #18

Kathryn was so proud of herself when she grabbed her first balloon/egg.

Lilyan Home for Easter Weekend #21

Those guys even hid one inside a balloon!

Lilyan Home for Easter Weekend #22

Nolan found one behind a photo

Lilyan Home for Easter Weekend #23

Carlin helped Lilyan find her last two

Lilyan Home for Easter Weekend #24

All of the balloons gathered on the ceiling after the hunt was done

Lilyan Home for Easter Weekend #25

Our non-traditional Easter dinner, served on disposable plates

Lilyan Home for Easter Weekend #26

Oh no! Fever! Back to the hospital.

Lilyan Home for Easter Weekend #27

Four-and-a-half-hour wait in the ER before finally getting a bed on her normal floor

 

 

 

Amazing Surprise Gift

Sometimes God sends us little unexpected gifts out of nowhere. He did that this afternoon.

All of our doctors talked together and decided that we can take Lilyan home for a little break this weekend! Even though she ran her typical 36-48 hour post-op pop-up fever at midnight last night. It’s a big deal to make this all happen because of her PICC line and her wound VAC, but everyone here knocked themselves out getting home supplies lined up insurance approval for everything. They really wanted Lilyan’s family all together for Easter. So sweet!

There are some stipulations:

  • We have to back in on Monday for another surgery.
  • We had to agree to get her straight to the ER for blood cultures if she runs any fever at all over the weekend because.
  • Each team took turns stopping by to tell us, over and over again, just how precarious her whole situation is, how things could turn dangerous very quickly, and stressing all of the things we need to watch for.

But we feel like we have developed a much better understanding of what we are dealing with now as we’ve walked through these last two weeks.

So after we get our PICC line refresher course late this afternoon (it’s been  few years since we went home with a PICC line in place), we will head home and meet another PICC nurse at our house so we can prove to her that we know what we’re doing.

It’s not much time together, but Lilyan will be able to dye eggs with her siblings tomorrow, do another little party tomorrow night (because having a party is always a good idea!) and we can all spend Easter together. We are indescribably grateful for this little break in the middle of this ongoing drama.

We don’t know anything past surgery on Monday. We’ll have to wait until we hear what they see during surgery that day before we know where plans go from there. We will return with packed bags, prepared for another stay here, and keep taking things one step at a time.

The kids have a meal coming to them Monday night, and some of you have asked if we need more. We will let you know as soon as we hear the plan after surgery that day. Thank you, thank you for even asking! Our hearts are full.

One new item for prayer. Scott has pulled a muscle in his back during all of the lifting of Lilyan over the past month. We need Dad in top-notch condition because this isn’t over yet, so please pray that some TLC at home this weekend, where we have older kids to help out, will provide healing time for his back.

Happy Easter to you all! It’s a beautiful weekend for the surprise of being able to celebrate together the most beautiful gift ever given to the children of God.

“No scene in sacred history ever gladdens the soul like Calvary’s tragedy. Light springs from the midday-midnight of Golgotha, and every herb of the field blooms sweetly beneath the shadow of the once accursed tree. In that place of thirst, grace hath dug a fountain which ever gusheth with waters pure as crystal, each drop capable of alleviating the woes of mankind. Thus Calvary yields us comfort rare and rich.

We never should have known Christ’s love in all its heights and depths if He had not died; nor could we guess the Father’s deep affection if He had not given His Son to die. The common mercies we enjoy all sing of love, just as the sea-shell, when we put it to our ears, whispers of the deep sea whence it came; but if we desire to hear the ocean itself, we must not look at every-day blessings, but at the transactions of the crucifixion.

He who would know love, let him retire to Calvary and see the Man of sorrows die.
~
Charles Spurgeon

“And when they had come to the place called Calvary, there they crucified Him.” Luke 23:33

All Done - Let's Go Home for a Break 4/19/19

Just finished her little sewing project, so let’s take a short break and go home!

 

Fifth Surgery is Behind Us

Written Wednesday, April 17, 2019:

Lilyan started running fever again just a couple of hours after my last post. Just like with her fever on Saturday night, it didn’t really knock her down like her previous fevers had done, and we were inclined to think that maybe they were just her body’s response to surgeries — Saturday night’s fever to her Friday surgery, and Monday evening’s fever to her Sunday surgery. Most of the doctors agreed with us that this was probable, so no one was overly worried about them. But things changed a bit yesterday.

We had just started to hear some whispers about possibly sending us home on Thursday if all went well in her surgery today (Wed). But very suddenly around 6:00 pm yesterday, her heart rate began to climb, and then her fever started going up. She ended up with a headache again and curled up in bed, feeling miserable. It was like we had backed up about five days, and it was so very disheartening. And worrisome.

She is still being treated with an antibiotic for the original organism found back on April 9. They identified two other organisms in her next surgery two days later, but one of these never grew anything in the culture and turned out not to be a big deal. The other is a pathogenic yeast (which means it can cause infection — and it has in her case), and it has turned out to be a much bigger concern. They are treating this with an anti-fungal medication. These organisms are fast-growing and really tough to fight.

Some of her doctors had already been to our room to talk to us earlier in the day, to help us gain a clearer picture of this new world we find ourselves in now. One of the things we are learning is that a wound infection is a big deal. A wound infection with metal hardware in your body at the site of the infection, is a whole different dimension. One of the biggest concerns about this is the possibility of the organism that is causing the infection attaching itself to the hardware. If this happens, it can form a film or a kind of barrier that allows it to seal itself off from any antibiotics or anti-fungals, making it almost impossible to fight the infection. This can become very serious very quickly, and if the infection can’t be gotten under control, it can become necessary to remove all of the hardware in order to clear up the infection and then try to start all over again with new hardware at a later date. And of course, the worst fear is that the infection will enter the bloodstream, which can result in death in 40-60% of cases.

So when she got so much sicker yesterday, there was immediate concern that this yeast might’ve started attaching to the hardware in Lilyan’s back. We were anxious for her surgery this morning so that we could, hopefully, get some answers.

There was good news and bad news. The good news was that there doesn’t seem to any thing attaching to her hardware at this time. Apparently, the surgeon should be able to  see a kind of sliminess to the hardware if this is beginning to happen, and she didn’t see anything like this.

But there also wasn’t as much healing as she had hoped to see, and quite a bit of dead tissue and just general “yuckiness” in the wound again. They did a more aggressive cleaning out this morning and took more samples, but they couldn’t close her up yet with things looking like they are. These samples showed quite a bit more yeast in spite of the treatment she is getting, and we feel like all of this explains her steps backward yesterday.

So where does this leave us? That’s the big question.

Everyone agrees that we can, at some point, go home even with the wound VAC in place.  They also placed her PICC line yesterday so that she can continue to get her IV  antibiotic treatments at home. Her antifungal is an oral med. They want her to start by taking both of these for about a month, but they have warned us that sometimes it takes, weeks, months, and even years of medications to get kids through an infection like this where there is hardware involved.

But these fevers are worrisome, and the Infectious Disease doctors are especially concerned about letting  her go home until they feel like they have them under better control. They will be back to talk to us again in the morning about where we should go from here. If she runs another fever this evening or tonight, they want to order blood cultures again.

Surgery is planned again for Monday, and this pattern is likely to continue about twice a week until things are healed enough to close her wound. So we will keep trying to take this one step at a time, while also continuing to pray that God will soon bring our family back together where we can all draw strength and comfort from each other as we face what we are beginning to understand is probably a very, very long road ahead of us.

A couple of pictures from today. Lilyan woke up this morning, not looking forward to surgery again, but she was excited to take her new Minnie Mouse with her this time. And she is definitely not as afraid as she used to be now that she has had so many of these shorter surgical procedures.

Surgery #5 4/17/19 #1

Early morning, pre-surgery bed-hair

And late this afternoon, a package from a Sunday School class at our church was delivered to our room. Lilyan was visibly touched by this sweet, sweet gift. We are continually aware of just how blessed we are by such a loving support system. Thank you all.

Surgery #5 4/17/19 #2

Post-surgery hair bun and package of love

 

Quiet and Blissfully Uneventful Day

Written Monday, April 15, 2019:

We are feeling more physically tired, but less emotionally spent than we did yesterday.

I spent the morning searching for some spring/Easter craft ideas, and reached out to my artsy friend again. She and Robyn have taken those ideas, communicated with each other, and managed to coordinate a couple more fun craft days with the kids at home. This has brought so much comfort to my mind and heart as I try to divide my attention between hospital and home. Now that I know they have these fun things to look forward to doing over the next few days, it has made it easier for me to just relax into hospital life and settle into a routine here with Lilyan as we move through what we pray will be our final days here.

Lilyan didn’t run fever again last night or today, and she seems healthier practically by the hour. This is so, so great to see and brings us such joy. Her next surgery is planned for Wednesday, but we don’t know what time, yet. We continue to pray that things will have healed enough for her doctor to close up her wound and remove the wound VAC, but they have assured us that, even if she can’t, they will be able to send us home with a wound VAC in place before much longer now that she is doing so well. It will mean more trips back here for other surgeries, but we can do that.

Lilyan’s final post-adoption report for China is due, and Scott spent the day working on that. As we filled out forms and went through old photos for this report, it suddenly occurred to us that this will be our last post-adoption report for anyone — forever. This is the official closing of a really major and precious chapter of our lives, and as much as I hate doing post-adoption reports, this brought a lump to my throat and a few tears. What an amazingly beautiful and agonizingly tough two decades this journey of adoption has been for us. I am amazed as I look back at those years, and it makes me anxious to finish our next book and share “the rest of the story” that follows our first book. Maybe soon. God truly does write the most incredible stories!

Lilyan spent the day learning to sew some simple stitches. She loved this little kit we got from the gift shop downstairs, and it was so fun to just have the time to enjoy doing this with her. What a blessing. I’ll end with a few pictures of her experience and, unless something unexpected happens tomorrow, I probably won’t update again until after her surgery on Wednesday.

Blessings to all!

Learning to Sew 4/15/19 #1

Getting started

Learning to Sew 4/15/19 #2

She took to this pretty naturally

The Faces of Concentration Collage 4/15/19

Her facial expressions as she worked and thought so hard were so fun to watch – “The Faces of Concentration”

 

 

Feeling Grateful but Not Brave (and fourth surgery behind us)

*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.

Waiting for 4th Surgery 4-14-19 #1

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.

Waiting for 4th Surgery 4-14-19 #2

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

Waiting for 4th Surgery 4-14-19 #3

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.

Day of 4th Surgery 4/14/19 #1

A few siblings and one niece headed to the hospital

Day of 4th Surgery 4/14/19 #2

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?

Day of 4th Surgery 4/14/19 #3

Day of 4th Surgery 4/14/19 #4

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.

A Fever-Free Day!

*Sometimes WordPress gets the date wrong, this post was actually written Saturday, April 13, 2019:

Groundhog Day has always been one of my favorite movies. But this week in the hospital has reminded me too much of that movie. Almost the same day over and over and over again. But today, something was different!

Lilyan never ran any fever during the night last night, and she never ran any fever today! In fact, it has been almost 32 hours since the onset of her last fever episode. This is definitely something different! And definitely something good!

It’s also a little confusing, though, because the early results of her wound culture started from yesterday’s surgery seem to be indicating that there are at least two other bacteria growing in her back. We won’t know much until there is more growth — hopefully tomorrow — and until they go back in during tomorrow’s surgery and see how things look now. But a couple of the possibilities are pretty scary.

However, the fact that she seems better at the moment, instead of getting sicker, seems inconsistent with these findings. So we continue to wait, and we rejoice in the good moments (or hours like we had today).

The only negative thing to report today is that since her first surgery three and a half weeks ago, her hair has been falling out. A lot. And today we noticed that she has a pretty significant bald spot on the back of her head We’re not sure what’s causing this, but we hope it will stop soon. I’d love to not have to keep her hair up all the time, because I think that would help, but it has to be kept up and away from her incision, especially with all of her trips to the OR at the moment. It may sound silly, but prayers that this balding would not spread would be very appreciated.

No-Fever Day #3

They are telling us that surgery will be very early tomorrow morning. We will let you know more when we do.

I’ll wrap up with just a couple of pictures from today. It was a quiet day with way less traffic and fewer interruptions here in the room, so Lilyan and I spent a relaxing afternoon coloring together in a coloring book she bought with Christmas money from her Grandmother, using an amazing set of gel pens that one of her sisters and one of her nieces brought to her here in the hospital. And then this evening, the three of us watched some old Full House episodes.

No-Fever Day #1

No-Fever Day #2

Watching “Full House” with all her buddies

 

 

Third Surgery is Behind Us

*Written Friday, April 12, 2019:

Lilyan’s pattern of waxing and waning fever has continued pretty much the same. After her fever yesterday afternoon during her visit with five of her siblings, we expected the next one around 10:00 pm or so.

Here is a picture of her during her non-fever time yesterday. We’re so, so thankful that she gets these breaks for several hours each day, but it sure makes us long to see her healthy all the time again.

Third Surgery Blog Update 4-11-19 #1

Her next bout with fever didn’t happen until 11:30 pm, but it did happen. I was already in such a dead sleep that I never even knew about it until Scott told me when we were both awake later at around 4:00 am. I somehow slept through her alarms as her heart rate and respiration increased. And through Scott getting up to help the nurse turn her and get her temperature, which was back up to about 103º again. And through him standing by her side until things began to settle down enough that she could fall back to sleep. I think this has only happened to me two or three times during all of the years of our kids’ hospitalizations and surgeries. I usually can’t sleep through anything that involves their care or problems with their healing, and when I do, it always means I’ve reached a serious level of sleep deprivation. I’m so thankful that we are both able to be here to spell each other and take turns caring for her when needed. It’s also very, very helpful to have two sets of ears as we try to make our over-tired brains process the details they give to us as they try to figure out what is going on with our girl. This isn’t a blessing that all families have, and we never, ever take this gift for granted.

This morning, I started the day trying to figure out how to get all of her hair out of the way for her surgery today without using anything metal, which isn’t allowed. It took a little creativity and a combination of ponytails, braiding, twisting, and wrapping, but we  did it!

Third Surgery Blog Update 4-11-19 #2

At about 12:30, the OR called our nurse to tell her they would be coming for Lilyan soon. Unfortunately, this was also right when she began having chills and increased heart rate, and sure enough, her fever went to 103º again before they got here for her. Her headache was so bad that she was in tears, and because of this, she was very emotional again about having to go back to surgery. Thankfully, her IV Versed worked wonders again, and things went very smoothly as we kissed her and handed her off at the OR doors.

Third Surgery Blog Update 4-11-19 #3

Lilyan chose her pony, Max, to go to surgery with her today. He was very happy to be her escort this time. She looked into his face and tried to hold back the tears as she waited for her Versed.

Surgery took just over an hour, and we were called back to Recovery to be with Lilyan before she even woke up. This was much better than on Tuesday when, somehow, her Recovery nurse didn’t get the message that we needed to be there with her as soon as she began to come around. She was distraught, in tears, and in a bit of a panic when they finally called us back to be with her. This is so, so important for kids from backgrounds of trauma. We are her source of safety in situations of uncertainty and/or fear. Frankly, I think this is true of all kids — even those born into stable homes. It’s something that I believe hospitals need to understand better.

Third Surgery Blog Update 4-11-19 #4

Still sleeping peacefully, snuggled with Max, when we got to her after her surgery

We were back in her room by about 3:00 pm, where a post card had been delivered for Lilyan and was waiting on her pillow. She was super excited to get some actual mail. She also loved her e-card that another friend sent her earlier this week.

Third Surgery Blog Update 4-11-19 #6

Third Surgery Blog Update 4-11-19 #7

Surprise mail on her pillow — such beautiful timing for its arrival

Third Surgery Blog Update 4-11-19 #5

After we got settled back into our room on A-3N, one of the plastic surgery doctors came to talk to us. She said things looked pretty much the same as they had on Tuesday, and that in spite of that clean-out, they felt the ‘murkiness” of the fluid in her wound indicated that there is still active infection there. They are going to take her back to surgery again on Sunday to clean her out again. We are very thankful to have what we all think might be an explanation for the continued fevers, but this was really, really discouraging news. It’s also discouraging that no one can be certain that this is definitely the source of her recurring fevers. It’s hard not to have definite answers.

Now, we just have no idea how long we will be here, and that uncertainty is so hard for Lilyan and very, very hard for some of our kids at home — especially Kathryn. It just seems like there is no end in sight.

Please continue to pray for healing and that we will be able to go home. Scott and I start to face the making of a difficult decision when we get this far into a hospital stay and have no clear idea how much longer it will be. We both do our best to stay here whenever our kids are admitted for anything difficult. As I said above, this is a blessing as it allows us to spell each other, and helps as we both try to process all of the info coming at us and make decisions together.

Another reason we both usually stay here full-time is that Kathryn has a terrible time if either of us comes and goes. Every time she has to tell one of us goodbye, she loses even more ground emotionally, and that extra stress puts her at higher risk for seizures. She actually does better if we both just stay gone for a stretch of days. On the other hand, there does come a time when they all, including her, need to have at least one of us back at home with them. This is especially true when we can’t give them a clear idea of how long this separation is going to last, and it means that we have to carefully weigh the pros and cons, the needs of each child, the risks for Kathryn, the in-patient child’s status, etc., and make the best decision we can for all involved. We will be facing the making of this decision if we are still here next week.

Also, we have meals for the kids up through Monday. If we are here longer than that, we may need some more help with meals for our army at home. Thank you so much to all who keep asking us to let you know how you can help. We will keep you posted.

 

Another Day Much Like Before

*Written Thursday April 11, 2019:

Each day is beginning to look very much like the day that went before it. Lilyan wakes up feeling pretty okay, drinks well, even eats her breakfast, and then around lunch time or so, her heart rate starts to increase, respiration speeds up, severe chills make her little body tremble, and then the fever starts climbing and she loses her appetite. They give her Tylenol (or Motrin), and the fever continues to climb; an hour later, they give her Motrin (or Tylenol), and over the next couple of hours, things start to calm down again for awhile. A few hours pass, and we repeat this cycle.

Today, this first round, sadly, coincided with a visit from a few of her siblings. She was so excited about them coming, and she tried hard to enjoy her time with them. We even managed to get a couple of smiles, but she just couldn’t do it. She was too sick.

Kids Come for a Visit 4-10-19 #1

Here comes her first fever for today

Kids Come for a Visit 4-10-19 #2

One of a couple of smiles we got while her sibs were here

While all of this was going on, the ortho/spine team dropped by. The plan has changed a number of times today, but they have decided now (for good, we think) to take her into surgery tomorrow instead of Saturday. They seem to be pretty worried about why she isn’t responding better to the antibiotic, even though the culture has confirmed that she is definitely on the right one for this bacteria.

We don’t have any idea what time her surgery will be since she is an add-on. So we will get up and be ready early, but also be prepared to wait until late in the afternoon.

Sadly, when it was time for Lilyan to tell her visiting sibs good-bye, she broke down. She pulled herself back together pretty quickly, but has remained sad since they left. Our hearts are so tired of watching her hurt — physically and emotionally.

Kids Come for a Visit 4-10-19 #3

Stopped the tears, but not the sadness

She has had both her Tylenol and her Motrin over the past two and a half hours, but no change yet. She gathered her animals around her and is watching Zootopia for now while we wait for the fever to give her a break again.

Kids Come for a Visit 4-10-19 #4

Once we get more info after the surgery tomorrow (or if plans change again), we’ll try to post an update.

 

Walls of Strength Fencing Us In

*Written Wednesday, April 10, 2019:

“Do not expect that God will ever permit you to live by sight. If in the course of your wilderness journeyings, He has brought you into great difficulty, yes, to the very margin of the sea, still, at His bidding, ‘Go forward,” though it be into that sea. Trust Him to cleave asunder its waters, making a dry passage for your feet, and causing those very waves which threatened to engulf you, now to prove as cloud, canopying you above, and as walls of strength fencing you in on every side.”
~ Octavius Winslow (1808-1878)

Today has been a little stressful as we have all tried interpret the sometimes-confusing signals Lilyan’s body is sending.

Last night, after I posted my update, Lilyan very suddenly became much sicker. Her temperature went up again, and she was in tears because of a bad headache. Her heart rate and respiration were both very high, and her blood pressure began to drop a bit. For the first time since this setback started eight days ago, she acted like a very sick little girl.

Lilyan - getting sicker 4/9/19

Getting sicker

This morning she seemed better, although she still had what I call “sick baby eyes” all day. She said she felt okay, although she told us multiple times that she was “really, really tired.” She ate and drank normally, her heart rate, respiration, and blood pressure looked good, and her fever stayed down. But just before noon, her heart rate and respiration began to climb again, and she just started to look sicker to me again. She ate lunch and said she was just really tired, but everyone was pretty concerned about the numbers on her monitor.  Because there was no fever, this was all mysterious to everyone caring for her.

By about 4:30 this afternoon, her temperature was back up again, and her numbers still looked bad, her headache was back, and for the first time, she said she didn’t feel like eating anything for supper tonight. This is not a good picture, but it at least is one that makes sense.

Here’s what we know for now and where things stand at the moment:

  • She definitely has an infection in her spine incision. They believe it happened either during surgery, or soon after. This is also probably why the incision began opening up last Tuesday.
  • They have identified the bacteria but don’t yet have sensitivities, which means they don’t know, for sure, which antibiotic is best for fighting this.
  • She also appears to have a urinary tract infection, but we’re waiting on confirmation of that.
  • The plan at the moment is to take her back into surgery on Saturday and take a look at the wound, possibly clean it out again, and change the wound VAC dressing, But we have also been told that, if her fever should go back up again today (as it has now), they might take her in sooner than Saturday. There is still no talk of when she can go home, but certainly not until that surgery is done, and not until this infection is responding better than what we’re seeing now.
  • They are going to take more blood this evening to culture that again and make sure she is not becoming septic.

As of about an hour or so ago, her left foot and lower leg have started swelling. She needs extra fluids because of the fever and infection, but we have vivid memories of the terrible swelling her body had to fight while in ICU, so we are a little worried about finding the right balance for her body, which seems to be sensitive to extra fluids. Specific prayers about that would be great.

We don’t like the unknowns, and we don’t like the open-ended-ness of this hospital stay. It’s hard on Lilyan, hard on the kids at home, and honestly, hard for us, too. It was especially hard today as our Robyn turned twenty-one. We will celebrate later, but the kids at home have done their best to make her feel just how loved and special she is today.

Robyn's 21st During Lilyan's Hospitalization 4-10

Some pampering for our new 21-year-old

But even though we don’t much like the path we’re on right now, we don’t have any choice about that at the moment. So we will continue moving forward one step at a time, drawing our strength from the One guiding our steps and “canopying” us.

Today’s high point: My dear friend Sue who has been doing some art classes/projects with the kids at home, helped them make an amazing gift for Lilyan, and our oldest daughter, Kristie, delivered that to the hospital for her this afternoon.

They all made hand-heart art for her.

How incredibly fitting that it would be delivered to her today — on National Sibling Day.

I love this so much! And seeing my “babies'” hands sure makes me miss all of them.

Hand-Heart Art for Lilyan 4-10-19 #1

If you zoom in, you can see each sib’s name

Hand-Heart Art for Lilyan 4-10-19 #2

Hanging on her hospital wall where she can see it from her bed

Lastly, we now have meals through Sunday for the kids at home. Thank you, thank you all who are helping us in such tangible ways. We feel your love!

Will continue to update as we know more.