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!

 

 

 

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