Pain, Spunk, Dizziness, and Victories

So sorry we left everyone hanging after we headed to the hospital last week. I’ll try to post a bullet-point summary below to update to the present.

  • Tuesday, 9/19: This was all about having her PICC line placed, having an NG tube inserted, and then beginning a major bowel clean-out to prepare the bowel tissue to be used for her surgery. Everything went very well except for some pretty significant vomiting when her NG was inserted. But this was very short-lived, and the day was mostly just boring.

 

Roslyn's Augment - NG Insertion 9-19-17

Step by step shots of her NG insertion

  • Wednesday, 9/20: This was mostly just a repeat of Tuesday, except that Roslyn had visitors. Ian had a follow-up with our ortho doc for his broken collar bone, and Ethan had a follow-up with our neurologist to discuss his seizure meds. Our oldest daughter, Kristie, brought them to the hospital where they took turns playing games with Roslyn while we took each to their respective appointments. Unfortunately, I forgot to get any pictures. Ian’s healing slowly, but nicely. Ethan’s seizures are better, but he needed another increase in his meds. I did get one picture of Roslyn sleeping peacefully that night in spite of the tough day she knew she had ahead of her the next morning.
Roslyn's Augment - Night before Surgery 9-20-17

Little angel

  • Thursday, 9/21/17: Roslyn was awakened at about 3:30 to begin preparation for her surgery. The transport team came for her at about 6:30, and surgery was going by about 8am. Here’s a little more detail for those of you who want to know more about what this surgery involved. Feel free to skip this part if you aren’t into details:
    • Roslyn had bladder reconstruction exactly a year ago and also got her Mitrofanoff (the stoma — or opening — built into her abdomen that leads to her bladder for easy emptying of her bladder every three hours for the rest of her life, which is what Kathryn had done seven weeks ago). Unfortunately, her bladder began to lose its capacity pretty much immediately after the surgery, causing her to constantly have wet diapers and continual urinary tract infections in spite of regular catheterizations. Because of this, we had to do another surgery called a bladder augmentation. This is a bigger and more involved surgery than the one she had last year and, in pretty simple terms, it involves opening up the bladder and then forming a “patch” from intestinal tissue to make the bladder bigger (the same way you might cut a purse open and then use a patch of other material to fill in that opening, making the purse bigger, thereby giving it greater capacity). This usually takes care of the capacity problem but brings new complications, too. I won’t even take time to go into those for now.

Roslyn came through her surgery very well, but it did take 11-12 hours. Her doctor was able to tell, as soon as he opened her up, that the reason her bladder lost its capacity last year was severe scarring from her last surgery. Her bladder was completely encased in heavy scar tissue, preventing it from working at all like it’s supposed to. Unfortunately, there’s no way to know if her body might do the same thing after this surgery.

After surgery, she was sent to the ICU for one night, just so she could be monitored more closely. Here are a few pictures of that day.

Roslyn's Augment - Before Versed

During pre-op, when she knew it was almost time for them to take her away from us

Roslyn's Augment - After Versed

In pre-op after they put some Versed into her IV. The separation went very smoothly after this

Roslyn's Augment - ICU #1

Later that evening in ICU

Roslyn's Augment - ICU #2

Her bunny, Floppy, by her side in ICU

  • Friday, 9/22 through Monday, 9/24: Roslyn did well in spite of a few normal challenges involving in getting the right balance of pain meds, and she was moved to a regular room at about noon on Friday. The rest of that day was mostly about resting and trying to control her pain. On Saturday, she woke up ready to start trying to cut back on pain meds and getting out of bed, which was pretty amazing. She actually did a very small amount of walking with her walker in our room that morning, but sadly, by late morning she started having pretty bad bouts of dizziness and even vertigo.The next few days were filled with blood tests and lots of discouragement as Roslyn tried to walk, but had to give up over and over again, saying things like, “Mommy and Daddy, you look upside down,” or “I feel like I’m falling sideways,” or “The room looks like it’s spinning around in circles.” After one such failed attempt, I asked what she was feeling, and she said, “Sadness.” She explained that she wanted to walk so she could get better so she could get home to the kids.

    In the end, they discovered that her potassium had dropped a bit low, due to very low magnesium. They were able to get these important electrolytes back into her body, and by 7:30 this morning we had a totally different little girl on our hands. Photos of those days.

Roslyn's Augment - First time standing 9-23-17

First time to stand up in spite of the 10-inch incision; so far, so good

Roslyn's Augment - First time to Stand 9-23-17 #2

Cheering after she did one short walk

Roslyn's Augment - Too dizzy to walk 9-24-17

Trying to hard to walk off the dizziness later Saturday morning

Roslyn's Augment - Too dizzy and sick 9-24-17

Nauseated and so sad after she had to give up and get back in bed

Roslyn's Augment - so tired 9-23-17

Dizziness led to nausea and exhaustion, and then sudden sleep while trying to color

Roslyn's Augment - So dizzy and discouraged - 9-24-17

Sunday night was a low point for our girl; dizziness and nausea and sadness were dragging her down, and she just wanted us close to her

Roslyn's Augment - Trying to beat the dizziness 9-23-17

Trying to walk again on Monday, but the dizziness won again.

Roslyn's Augment - Too Dizzy 9-23-17

Daddy carrying a discouraged little girl back to her room when she wasn’t able to continue

  • Tuesday, 9/26: As I said, we woke up to a very different girl this morning. She woke up with little-to-no dizziness after the overnight and early morning replacement of magnesium and potassium, and hungry and rarin’ to go. We were met with the happy news that her NG could come out and she could start on clears. She was so excited to get rid of the NG and to eat a popsicle. Then she couldn’t wait to hit the halls and walk until her legs couldn’t keep going. She’s had such a great day and is moving forward with so much speed now, that her nurses and her urology team are blown away. We are so thankful for this!

Thank you to all of you who have prayed, provided food for our kids at a home, and sent encouraging notes. We are so grateful to all of you. I’ll close with some very happy pictures from today and one awesome video.

Roslyn's Augment - Popsicle! - 9-26-17

A popsicle! First food or drink since breakfast on 9/19

Roslyn's Augment - Cape - Mask - 9-26-17

It’s super hero week here at the hospital and Child Life brought a cape and mask to Roslyn’s room for her to decorate. She couldn’t wait to head back out to the hallway to show the nurses what she had made

Roslyn's Augment - Cape - Walking - 9-26-17

Our sassy little girl’s got her spunk back!

 

 

 

From Strength to Strength

A year ago today was Roslyn’s first full day at home after her bladder surgery; today, she is back in for Round Two as we keep trying to get her bladder to a healthy place.

I don’t want to do this.

I can’t even say how much I don’t want to do this.

Kathryn is still recovering from her surgery last month, and Scott and I are still just too tired. But here we go anyway. This was the prayer of our hearts as we left our kids again (for at least 2 weeks this time), and drove through heavy traffic to Cincinnati Children’s Hospital:

“Heavenly Father, we need strength for the day that is before us. You alone can give us what we need. You are our refuge and our strength — a very present help in times of trouble. You have promised to be with us, and to strengthen us. You have said that as our days are, so shall our strength be; and that your grace is sufficient for us. We accept these assurances, believing that we shall obtain help from You for every duty and every struggle  this day. We ask You for grace to perform our allotted tasks with diligence, and in all our ways to acknowledge You. Take all the tangled threads of our lives in Your own hand, and unravel them, weaving them into a web of beauty.”
~J.R. Miller (1840-1912), Family Prayers 

We are so blessed, once again, by people who have lined up meals for our kids while we are gone, and for friends and family who will be running errands and shuttling kids to work and appointments, and to our daughter and son-in-law, Greg and Kristie, who will move into our home today with their eight kids and care for everyone there.

Unfortunately, the home construction projects didn’t finish before we got to this point as we had hoped, but volunteers gave up their past two Saturdays to get it all to a point where we can pause for this two-week period and focus on the children’s needs. As soon as we get home, we will all jump back in and try to get it all finished by the end of October.

We would cherish your prayers for exactly the words of the prayer above. We can fret and point to this and that solution to our stress, but it all really does come down to resting in God’s sovereignty as He orders our steps each day, and to trusting Him to give us what we need as we function on very empty tanks. We want to believe Him when He promises to fill us with all that we need to follow Him.

Please pray for Kathryn who did not want us to leave her this morning; our other children who weren’t ready for us to be gone again, either; and for Roslyn. She still has fresh memories of how hard this surgery is, and this one is actually even harder than the one she had last year. She is nervous, but such a brave little girl.

We have discussed splitting up for this one so that one of us could stay at the hospital and one could go back and forth for the times when we are both needed at the hospital. But we have learned that the back-and-forth is actually even harder for Kathryn. She seems to do best if we just settle into a new, although temporary, normal as a routine is set up at home and we all push through to get this behind us. But it’s hard for everyone, no matter how we do it.

We will post updates as we move through these next couple of weeks. Roslyn will undergo two days of not-fun bowel prep today and tomorrow, and then surgery is scheduled for 7:30 Thursday morning.

Below is a picture of our brave girl this morning before we left the house, as she posed with her new doll that dear friends sent to her as a surgery gift. She smiled for us, but there was a lot of anxiety coursing through her little body.

“Blessed are those whose strength is in You, in whose heart are the highways to Zion. As they go through the Valley of Baca, they make it a place of springs; the early rain also covers it with pools. They go from strength to strength…”
Psalm 84: 5-7

“As your days so shall your strength be.”
Deuteronomy 33:25

Roslyn Augmentation #1

Tiny Update

I posted on my personal blog this morning. It did have some news about Kathryn’s progress, but it wasn’t exactly an update on Kathryn.

“. . . It’s more about our other kids, many of whom are serving on the long list of caretakers for Kathryn during this season of their, and her, lives. It’s more about my own heart that sometimes cries, ‘Foul!’ when my children, or others close to me, go through hard times . . .”

You can read that post at this link – The Back-Look Into My Life.

Kathryn's Surgery - Setting Up for Morning Wound Care

 

Weak, But Not Weak Enough

In case you haven’t heard, we did manage to finally get Kathryn home on Tuesday night. She was softly and peacefully glowing as her siblings surrounded her and poured their love over her all evening.

We are incredibly thankful that we are home, but the road is hard, and we are beginning to see how long it’s going to be.

“When God wants to move a mountain, He does not take a bar of iron, but He takes a little worm. The fact is, we have too much strength. We are not weak enough. It is not our strength that we want. One drop of God’s strength is worth more than all the world.” 
Dwight L. Moody (1837-1899)

“Do not be dismayed, for I am your God. I will strengthen you and help you.” Isaiah 41:10

This quote from a year ago popped up in my Facebook memories. (I did some quick research, and worms can pretty much totally change the habitat of an area; not sure they could take down an entire mountain, but the point is pretty clear.)  

It’s a fitting quote for this day, and I’m feeling it deeply in my worm-like self this morning. The fatigue is absolutely life-sucking as we try to keep caring for Kathryn. Her post-op care is one of the hardest things we’ve ever done (especially right in the middle of on-going-but-stalled construction in the house), and I really can’t describe how tired we are.

The wound cleanings/dressing changes are so painful for her on her open incision, and my heart is tired of watching her hurt.

Yesterday morning, she slept until about 7am. By 7:30, Scott and I were working on cleaning her up and preparing her for her first shower since her surgery. It took five to six of us working almost constantly until after 1pm to get her cleaned, her hair washed, her abdominal wound dressing changed, feed her, etc.

Here is a precious picture of Kathryn surrounded by several of her sisters during her difficult shower yesterday. I watched them doting on her and encouraging her and saw her respond to their love with smiles, and with courage to push herself through the pain. And it brought tears to my eyes as I compared this amazing picture to what her life would be like now if she had gone to the institution she was in the process of being moved to when we adopted her. It’s more than I can bear to think about.

Kathryn's Surgery - First Shower

After we finally got her ready for the day, one of these sisters gave her a manicure. She was thrilled by this.

Kathryn's Surgery - Manicure

We passed through her first day in kind of a haze of diaper and dressing changes, doling out medications, and comforting her when she was in pain. Thankfully, she is sleeping well once we get her in bed at night.

This morning, she was awake by 6am, and we started the whole process over again. As we were cleaning her wound this morning, she was whimpering and trying hard not to cry. We are dog sitting long-term for our son and daughter-in-law, and in the middle of this process, their sweet dog, Silke, positioned herself so that her face was resting against Kathryn’s face. Kathryn reached up and held onto Silke’s soft fur. What is it about schnauzers that make them such great comfort dogs? We have seen this behavior toward Kathryn in Silke before and in our own schnauzer, Godfrey.

Kathryn's Surgery - Silke Love

Anyway, this quote reminded me that it’s not only okay to be weak and exhausted, but that it’s even good because it drives me back to my Father for the strength needed to get through the day. I will strive to embrace my lack of strength today and drink in great gulps of God’s.

Ways you can pray:

  • healing of Kathryn’s abdominal wound
  • our ability to lean on God for the strength we need
  • that the roadblocks preventing the completion of this construction project would miraculously be removed so that this can be finished before we have to go back into the hospital with Roslyn on September 19. I need to get the kids’ schooling started, but I can’t even access my materials because they are all packed away until this construction can be completed and we have a place to organize them.
  • patience as we care for our other children’s needs in the midst of fatigue-induced brain fog
  • rest; we are very tired and need some calm days and some good stretches of sleep at night

Thanks so much for continuing to walk alongside us.

 

 

Frustrating Day

Well, we are still at the hospital. I won’t take time to go into all of the details, but it was an exhausting day full of not great communication.

Kathryn woke up this morning, still determined that she was heading home today. But we couldn’t know for sure until we heard from her urology doctor, since he’s the main surgeon in this picture.

So we waited.

And waited.

And waited.

All day.

Kathryn went from this (smiling at everyone and telling them about going home, talking our ears off about seeing the other kids and having our homecoming party tonight) . . .

Kathryn's Surgery - So Excited about Going Home

Overflowing with excitement all day and telling everyone she was going home

. . . to this by late afternoon when we still hadn’t heard anything. The stress of waiting and not hearing anything definite finally became too much for her emotionally.

Kathryn's Surgery - Suspecting She Won't Go home

Too much stress while waiting for answers

The kids at home were slowly falling apart, too, as they waited for word. And we got to practice patience in the midst of incredible frustration as hour after hour ticked by.

Finally at 7:30 tonight, our surgeon came to our room. He had been tied up all day with surgeries and meetings, but thought we had been told we were staying another night. We had a productive talk about communication breakdown and worked through the feelings resulting from that. It turns out that her wound culture did finally grow something. Three somethings, in fact. Two of them are the same as the bacteria causing her UTI, so they are pretty sure those positive results were just contamination from that. But the third was something different. They wanted to take one more night on IV antibiotics and take time to discuss whether she will need further treatment for that before sending us home.

So here we are. We were able to get Kathryn a fun snack left here by a friend earlier in the week, talk her through this decision, and promise her that we will do something fun with her tonight here at the hospital. She wanted a pizza party, so pizza party it is. She calmed down and accepted this unwanted news while eating her snack and waiting for her pizza to arrive from the hospital cafeteria.

Kathryn's Surgery - Keeping her Calm

And now, she has already moved on to being smiley and excited about going home tomorrow. Child-like faith. I want that. I need that.

We were also able to meet with the Wound Care Team this morning as we had hoped, and they gave us great products (they always carry magic around in their wound care bags) and clear instructions about how to help heal this very ugly wound that has now taken over the entire length of her incision. We feel good about this now.

Our urologist has promised us that, barring any emergencies, we will definitely be going home tomorrow. Scott called and talked with kids at home and encouraged them to pull together and hang on for one more night and that we would all be together tomorrow. They sounded good by the time he hung up with them.

So. We learned new lessons today about being willing to be used where we are placed and about waiting on God’s timing.

And Kathryn taught us how to adjust joyfully in the midst of disappointment.

I want to close with this picture that I forgot to post yesterday. I love this photo. If you were following our blog a year ago, you might remember the post about Maggie and Murphy. Well, the gift shop now sells a GIGANTIC Maggie and Murphy! Kathryn held them for the photo only. They are not coming home with us.

Pretty cute, though. Right?

Kathryn's Surgery - Gigantor Maggie and Murphy

 

 

 

What Does Tomorrow Hold?

Sorry I left everyone hanging again after our update on Friday night.

On Saturday morning, as Kathryn was waking up, she looked up at me and said in a strong voice, “Can you help me sit up?” It was a good beginning to what turned out to be a good day.

She was very close to her normal self all day. She was super excited to change from a hospital gown into one of her favorite nightshirts; she sat up in her wheelchair and played for much of the day; her youngest nephew visited and blew bubbles with her and danced for her to the sounds of the Moana soundtrack; and she put on her braces and reached that all-important milestone of standing for the first time post-operatively, with Daddy’s help.

Kathryn's Surgery - Eeyore Nightshirt

Her much-loved Eeyore nightshirt

Kathryn's Surgery - Coloring With Mommy

Coloring with Mommy

Kathryn's Surgery - Keller Visits #4

Trying to help her nephew learn to blow bubbles

Kathryn's Surgery - First Time Standing

Standing with Daddy’s help 

Late in the afternoon, she heard her urologist say that she might be able to go home on Monday as long as her fever didn’t come back. We sometimes forget how much Kathryn catches of what goes on around her. She turned to me, flashed this smile, and said, “Soon I sleep in my own bed.” Look at the way her eyes are glowing. If we had any doubt that she was missing home . . .

Kathryn's Surgery - Sleep in My Own Bed Soon

Then, the day got even better when they discontinued IV fluids and told her that her PICC could be disconnected from the pump except for her every-six-hour antibiotic infusion. She also caught this news and was overcome with joy, as you can see! She threw her now-freed right arm into the air and cried, “Mommy, look!”

Kathryn's Surgery - PICC Not Connected Now

No longer tethered to her IV pump!

Then we hit another little bump last night before bedtime. Her nurse came in to check her temperature, and it read 101.5. Kathryn was smiling and talking and showing no signs of being sick, so we were certain this was a mistake. We asked the nurse to check it again, and she did. It read 99.1, which is not considered a fever. Unfortunately, she recorded the first number in spite of the fact that we knew it was mistake. We went to bed not knowing where this would take things

This morning, Kathryn woke up, and one of the first things she said was, “Tonight my last night here.” (She is somehow actually keeping track of what day it is and when she is supposedly going to leave!) We told her maybe, but she insisted that it would be tomorrow.

Then her incision was uncovered for a check. And it looked even worse. It actually looks really terrible. So terrible that I won’t post a picture.

We talked to the urologist on call today, and he assured us that this would not keep us here, but that the “fever” from last night might. We will have to see what the Infectious Disease Team says tomorrow. They will make that call.

As far as her incision, we have made the decision to request a consult with Wound Care. We went through this with Nathan last year, and after many months, we finally consulted with Wound Care. They were able to heal the wound in a few weeks. We don’t want to wait so long this time, now that we know what kinds of things Wound Care is able to do. However, we are seeing, one more time, what a tricky thing hospital politics can be. We are meeting some resistance concerning this decision, so would you please pray that everyone will listen to what we have to say, and that the best decision can be made for Kathryn without damaging any relationships with those who care for our kids. We have great respect for our children’s doctors, and we also have some experience with how delicate things like this can be (even though this should not be the case.) But we also know that our children’s needs will always be our first priority. We will know more tomorrow.

In the midst of these simmering frustrations, Kathryn has been super excited all day and kept telling everyone, “I see my house tomorrow.” “I sleep in my bed tomorrow.” “I use my own toothbrush tomorrow.” Etc. We have given up adding the maybe. 

God loves child-like faith. This doesn’t mean that we always get what we ask for, but it does mean that we trust that He wants to hear our hearts’ desires; that He loves to answer our prayers; that we can always trust Him to make the best decision for us; and that we rest peacefully and like a child in His arms.

As we wait for a definite discharge plan, I thought this seemed like a very good quote. Our prayer is that we won’t ever waste any of the minutes of our lives, no matter where God places us.

“Whenever God puts is in any place, He does so intelligently, with some purpose of good for us. We should be satisfied that we are never in our place by accident, but that God has placed us where we are for some good reason. He is always setting us lessons to learn. The lessons are not always easy, either; sometimes they are very hard. But if we accept the divine teaching and take up the duties which He gives to us in our hard place, we shall always find the best blessing and the sweetest comfort. While we cannot, therefore, change the life conditions or circumstances of our lives, we can sometimes work a little more bravely, live a little more sweetly in the hard conditions.”
J. R. Miller (1840-1912)

I’ll close with a few sweet pictures from our good day today. We don’t know what tomorrow holds. Our kids at home are really struggling hard, as of tonight. We believe we need to be with them, and that Kathryn needs to be home again. We feel that she is in a place emotionally that will prevent her from healing any further physically if we don’t go home. We are asking God to bring us home tomorrow. But if He doesn’t, we will still trust Him. He always has a plan; that plan is always for our good. We will be deeply disappointed, but we will look to Him to get through that disappointment and believe that He has some reason for keeping us here.

Kathryn's Surgery - Balloons

Kathryn loves her balloons

Kathryn's Surgery - Gift Shop Outing

A friend sent Kathryn a card with some money to use in the hospital gift shop. She was very much up to this outing today, and chose this baby doll and bottle.

 

 

 

More Disappointing Setbacks

We have some really disappointing updates to pass on, and are feeling more and more worried about our girl again now.

Kathryn was continuing to progress, in spite of the issues that kept popping up and setting us back with recovery and threatening to prolong our stay here at the hospital.

First there was the fever (resolved as she responded beautifully to the antibiotics prescribed for her infection); then there were her ongoing PICC line issues (resolved now after a couple of dressing changes and multiple pump adjustments); after that, we were faced with terrible diarrhea, caused by her new antibiotic (resolved now by the re-introduction of her probiotics and by changing her to a different IV-only antibiotic); and finally, there was her partially collapsed left lung (also resolved now, we think, as she’s cooperated like a champion with respiratory therapy).

Then late yesterday afternoon, we noticed that her incision seemed to be opening up in one place. As they have continued watching that, it has gradually opened more, and we are now seeing a couple of other places beginning to open up. This is of concern for a couple of reasons: 1) the risk of infection caused by the open wound, and 2) the risk that the entire incision could eventually open.

They started a treatment today called “wet-to-dry dressing.” Gauze that has been saturated with sterile saline is placed over the open portions of the wound, and then that is covered with layers of dry gauze. As the gauze dries, it draws the dead/decaying tissue up out of the wound, forcing it to heal from the inside out.

We will have to continue this treatment at home because it will take about two weeks to heal the wound. But they want to make sure it’s responding well before they let us leave here.

And then this evening, after such a wonderful day, we noticed that Kathryn was withdrawing more, becoming increasingly fragile emotionally, and feeling hot to the touch. Sure enough, her fever is climbing again. We are so worried about her now. They have ordered blood cultures and are going to culture the open wound to check for infection there.

We had hoped to maybe be released over the weekend, but it’s clear now that we have no idea when we will be leaving. Certainly not before Monday for sure.

In addition to our worries about Kathryn, I also start to worry about the other kids at home after so many days. Some of our younger ones begin to regress with some of their more challenging behaviors when we are away from them for too long. But it really is taking both of us to care for Kathryn here at the hospital, so we will press on.

Would you please pray for our kids back home — the younger ones and the older ones who are caring for them? We would really appreciate that.

And would you please pray that we can find the reason that Kathryn’s fever has returned, and also that her wound will heal?

Up to this point, Kathryn had been becoming more and more like herself every day. She was beginning to talk to us a little more each day, and we were seeing a few more smiles each day. I’m so sad to see her slipping away from us again. I can’t even describe how heartbreaking this is.

A very dear friend surprised us yesterday by ordering an amazing and very special meal to be delivered to us this evening via Uber Eats. I am sad tonight, and tired and discouraged. But God had already put the pieces in place for this special gift of love even before we knew any of this would happen. How like Him to reach down and breathe His love over our sad and tired hearts before we even asked.

Kathryn's Surgery - Dinner from Palomino's

Incredible dinner tonight (you can see how sick our girl is in the background)

We will try to hold onto this reminder of God’s love and sovereignty in the midst of the uncertainty and fear.

Here are a few pictures from the past couple of days, showing you how much progress Kathryn was making before these setbacks.

Kathryn's Surgery - Blowing Bubbles

Blowing bubbles yesterday to help with the lung issues – using a special bubble blower loaned to her by her niece who has Down syndrome and understands how hard it can be to blow.

Kathryn's Surgery - Chloe in Hair

A new puppy named Chloe who loves to snuggle in Kathryn’s gorgeous hair.

Kathryn's Surgery - Gel Clings

Playing with Gel Clings just this morning, sent to her by friends while Bella and Chloe watch (see that awesome smile?)

Kathryn's Surgery - Magic Ink

Coloring with Magic Ink

Kathryn's Surgery Fever Going Back Up

Our sweet Kathryn shivering under blankets as her fever climbs again tonight.

Kathryn's Surgery - Mermaid Hair

One of my favorite pictures of Kathryn – ever! She was so happy and being silly with me yesterday. She thought it was so funny to get this picture of her amazing hair. I miss this girl’s smile so much.

 

 

 

It’s a New Morning

So sorry to have left everyone hanging after last night’s events, and the update following that post. It’s been a very intense morning — good and bad. Here you go:

Kathryn’s fever came down enough last night that she was exhibiting a much more natural restfulness. (YAY!) They let her start back on her Melatonin last night, and I think it’s very possible that she would’ve slept through the night if we hadn’t had issues with her PICC line again. (Can I say out really loud just how much I now hate the sound of that alarm?!)

As long as I sat beside her bed, hunched over her with my hand over ear to block out the PICC alarm, and a pillow over her head to block out the nurses’ flashlights, she was able to stay mostly asleep for the night. But it was a very long night. I was able to sleep deeply in the parent “bed” from 2am until 4:40am while her PICC line decided to take a break. But then, things were off and going again until morning .

Kathryn's Surgery - Wednesday Night

This is what Kathryn and I looked like for most of the night (minus the pillow over her head).

It seems that she managed to, somehow, get a decent amount of sleep last night, and that her fever was down enough that she was more like herself because very early this morning, she even tried to give me a smile.

Kathryn's Surgery - Early Thurs. Morning

A little later in the morning, a PICC team came in and tried changing the dressing over her PICC line to see if that would help. (It didn’t. In fact, they have now tried TWO dressing changes with no improvement.) Because this is a sterile procedure, everyone in the room has to wear a mask. They don’t usually make the patient wear one, but for some reason, they did today. Just a few hours ago, Kathryn was so “not herself” that no one could get anything near her face without her becoming hysterical. Not sure why, but it would cause intense fear and panic for her. But this morning, she accepted the mask very peacefully. Another happy milestone.

Kathryn's Surgery - PICC Dressing Change

Pain control is incredible! I mean, pain is almost nonexistent! This is huge, and we are so thankful for that. And her body is clearly responding to the Cipro, because she is feeling so much better and her fever is continuing to creep down.

But . . . a new challenge developed this morning. Horrible diarrhea, resulting from the Cipro. She’s been asking to get out of bed and play in her wheelchair and to eat and drink, but two full bed changes and three baths have really held us back. (By the way, the fact that she started talking again has also been a huge step forward.) The urology team is consulting with Infectious Disease (ID) about any other options out there, and everyone has finally agreed to let us start Kathryn’s probiotics back up again. We are super pro probiotics at our house. We are hoping this will help some while we wait to hear back from ID.

Her personality is still coming back little by little, in spite of the diarrhea, and it’s so great to see her dimple peeking out at us a bit.

Kathryn's Surgery - New Puppy Th Morning

Kathryn and her new puppy (still discussing names)

Later in the morning, we were finally able to get her in her wheelchair so she could play with Bella for awhile. She was content, we were able to coax a couple more smiles out of her over the next half-hour or so. Here is one of them.

Kathryn's Surgery - Later Thursday Morning

A few minutes after this sweet smile, though, she dissolved into tears again. We think she is just tired, so she is settled back into bed, and we’re hoping she will be better again after a short rest.

Thanks so much for the continued prayers.

 

God Has a Different Plan

Just wanted to update my last post.

Sadly, Kathryn’s fever has continued to climb. The pain team just pulled her epidural. The next 24-48 hours will be more complicated now. But we will get through them. They have agreed to add Toradol to her IV, along with IV Tylenol. Now that we are almost 24 hours past her surgery, we just might be able to get her through with those, and avoid having to add any mind-fuzzing narcotics. That is what we are praying for now.

As far as the fever, they are now thinking that it’s the UTI that showed up in her urinalysis the night before surgery. The culture for that came back today and showed quite a bit of growth. They will be changing one of her antibiotics to Cipro again. I hate that drug, but sometimes you have to just do what you have to do. When Plans A and B fall through, you go on to Plan C. One step at a time.

PT came by again and had her do some actual sitting on the side of bed, and although that was miserable for her while she’s feeling so bad, she was such a trooper and worked really, really hard. She’s such a strong girl, but so very sick. She is now so sick that she doesn’t even want her music or to hold any of her animals or dolls. The only thing that seems to bring her any comfort is to hold onto our hands.

Thank you so much for praying for her and for us. She is sleeping pretty peacefully at the moment while squeezing my fingers (making typing a little tough), and we are so thankful for that.

Kathryn's Surgery - Fever Climbing

Sleeping pretty peacefully in spite of her climbing fever