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.

Second Surgery is Behind Us

*Written Tuesday, April 9, 2019:

We are finished with today’s surgery. Lilyan took a new buddy with her to the OR. She also came through it all beautifully this time.

Her IV stick last night was so terrible that it’s apparently practically legendary. The nurses are all still talking about it on the day shift today. First the Vascular Access Team worked a very long time, trying to get in, and then they reached out to PICC nurses who were finally successful. But it took a full hour of digging around in her little arms. Lilyan did so great even though her whole body was trembling by the time it was done. We  decided that this ordeal warranted one more stuffed animal. She named him Michael. Doesn’t he have a great smile?

Second surgery #1

We had a faulty IV pump that made noise all night last night, so none of us slept very much, but Lilyan woke up this morning mostly relaxed and ready to get this behind her.

Second surgery #3

Waiting for transport to take her into the ORThey finally came and wheeled her into the OR at about 10:15 this morning (after a dose of IV Versed like last time). One of the same anesthesiologists who was with Lilyan for her big surgery three weeks ago, was with her again today and touched base with us before the surgery started. We were thankful that someone who was fully aware of the crisis Lilyan went through during that surgery was with her again today, and she assured us that she would be watching Lilyan very closely. This really kind doctor was clearly still shaken by what happened and told us she would never forget it.

Second surgery #2

Riding to surgery together (that incredibly straight part in her hair was done by her older sister, Robyn, who braided her for me before we headed to the hospital yesterday; I was impressed.)

The whole surgery took about three hours. Her spine surgeon told us that the wound was pretty bad, and that it was opened up all the way to her new rod that was placed three weeks ago. It also appears, based on her inflammation markers in her blood work and on the bacteria spotted in the initial microscopic peek of her wound culture, that the wound is the source of the fever. The good news is that it appears we caught this infection at its very beginning, and everyone is hoping for a fast turnaround once the Infectious Disease (ID) doctors decide what antibiotic to start.

Once her ortho/spine surgeon finished his part, he handed Lilyan over to the plastic surgeon, and that group got her wound VAC placed. When we got back to her in Recovery, she asked, tearfully, how much longer she would have to wait for her surgery to start. She was very happy to hear that it was done, and visibly relaxed so much then.

Second Surgery 4/9/19 #4

We are back in her room now. No one knows how long we will be here, but it sounds like we certainly can’t leave until the bacteria causing this infection can be identified, and they seem to think that will be until the end of the week, at least. We hope to know more when the plastic surgery team, and the ID doctors pop in later this afternoon.
A few of you have asked us to let you know if we need anything. One thing it looks like we will need is a couple more meals for the kids at home. I know that they have a meal for tonight and another for tomorrow night, but nothing after that. Please just let us know if you are able to help with this need, and thank you, thank you more than we can say.
We’ll post more when we know more.

 

Not What We Would’ve Chosen

*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.

Lilyan's Homecoming 3/29/19 #1

We arrived home to a decorated door

Lilyan's Homecoming 3/29/19 #3

Lilyan’s niece, Jhannel, drew this picture of happy babies to welcome Lilyan home

Lilyan's Homecoming 3/29/19 #2

Jhannel, giving Lilyan her picture

Lilyan's Homecoming 3/29/19 #4

The next day, the decorating began

Lilyan's Homecoming 3/29/19 #5

Lots of balloons

Lilyan's Homecoming 3/29/19 #6

Lots of crepe paper

Lilyan's Homecoming 3/29/19 #9

Watching Mary Poppins Returns

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.

Lilyan's Homecoming 3/29/19 #11

Lilyan's Homecoming 3/29/19 #12Lilyan's Homecoming 3/29/19 #14

Lilyan's Homecoming 3/29/19 #15Then 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.

Lilyan's Homecoming 3/29/19 #16

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.

Lilyan's Homecoming 3/29/19 #17

We will update again tomorrow. Thank you for all of the love and prayers.

Blessings Mixed with a Dose of Reality

7:00 pm – March 28,  2019:

First of all, sleep is totally UNDERrated! It’s magnificent! I want more! We all slept really well last night, and our night crew here on A3N was wonderful. There were a number of things they had to deal with for Lilyan during the night, but they were practically silent, and we all mostly slept through those. Thank you for all who prayed specifically about sleep! Lilyan didn’t wake until 8:30 this morning!

Today was another good day, and more steps forward. Slightly more eating and lots more drinking, some hair pampering, and some special visitors. Four of Lilyan’s siblings, and one of her nieces came to see her. They have all been missing each other so much, and there were tears on both sides when they had to say goodbye.

2nd Day on the Floor 3/28/19 #1

Hair all ready for visitors

2nd Day on the Floor 3/28/19 #2

Dear ones come bearing gifts

2nd Day on the Floor 3/28/19 #3

They really do all miss being together

2nd Day on the Floor 3/28/19 #5

They have also all been so worried about her.

2nd Day on the Floor 3/28/19 #6

Granddaughter Jhannel couldn’t get enough of fussing over Lilyan – stroking her hair, smoothing her covers, tucking her in. So sweet! She has such a tender heart.

Lilyan’s primary surgeon (orthopedic) came by this afternoon and said that, after an MRI tomorrow morning and a consult with the plastic surgery team about caring for the one drain that has to remain in place for a while, we can GO HOME! We are all ecstatic about this news.

However, he quickly snapped us back to the seriousness of this whole situation by warning us not to be deceived by how good she looks, and saying in a very somber voice that she is “far, far from out of the woods,” and that “that won’t happen for many months.” He has instructed us to watch for any sudden fevers, any funkiness with her incision, or anything that just feels kind of off. He is also still not liking the congestion in her chest and wants us to keep watching that closely. She won’t even be allowed to do any crawling or bathing (can shower, but not sit in a bath) for at least 3 months. She can sit and play on the floor with the other kids, but instead of flopping to her stomach and pulling herself around the room with her arms the way she used to do, we will have to lift and carry her anytime she wants to move to another spot to play. At one point, months ago, he told us that it could be as long as two full years before we can all feel completely certain that she has come all the way through this. We have a long spring and summer ahead of us — at least.

But this morning, with the help of a physical therapist, I sat Lilyan on the bed to do her hair for her, and I was shocked at how straight she was sitting. She immediately said, “This feels weird to me.” We asked her what felt weird, and she said, “I’m sitting up straight. I’ve never done that before!” It was an emotional moment. It’s incredible how different her back and her posture already are, and at one point last night, I was aware of some stress somewhere inside of myself. As I tried to determine the source of this stress, I realized with surprise that I was dreading this surgery, and then it struck me powerfully that it’s over! We have completed this surgery and are now more than a week down the road of her long recovery!

It wasn’t until that moment that I fully comprehended just how heavily this has been hanging over us for a year now. And it’s done! There are no words to express how thankful we are that this much is now behind us. We are ready to just keep walking forward into whatever is ahead now.

Thank you, thank you all for walking this part of Lilyan’s Spine Saga with us. Unless we don’t make it home tomorrow, I won’t be updating daily anymore. We will really, really have our hands full because Lilyan requires such full time care, and most of that can only be done by the two of us. And, of course, none of the other daily responsibilities that require our time, energy, and attention have gone away. In fact, some of our other kids are always very needy for awhile after we arrive home from a lengthy time away during a stressful period like this. Continued prayers for the coming months would be wonderful, and we will update as we are able.

Just Look!

Another night of no sleep last night. BUT . . . Look who got her hair washed today, had all tubes removed from her face, lost all of her IV’s except one, started drinking by mouth  and even ate a few bites of food . . .  AND left the ICU unit tonight!!!

We are thrilled to be back on our familiar floor in the A building. So, so thankful for the incredible nursing care we got in the ICU and for the way the doctors there treated all of us with respect and genuine concern. And we will never, ever stop being thankful for those who were part of saving our baby’s life a week ago right about now.

Goodnight from A3 North!

Leaving ICU 3-27-19