The Dilation that Wasn't

Wonderful news this morning!! Dr Skarda says Audrey's esophagus looks wide open with no signs of acid, and he didn't even need to dilate! Her new medication seems to be doing the job. He was going to put in a stent for two weeks if she was starting to stricture, so I am over the moon for this report. Phew!! Thank you for all the kind thoughts and prayers! It means so much to us.

Homecoming Celebration

A perfect morning for the BYU Homecoming Parade and free Blue Pancake breakfast!!

After the parade, and before the mountain of Saturday chores, we went a-pumpkining at the patch where Justin keeps beehives. It was a perfect fall day washed in golden light.

 

 

Success!!!!

The leak is healed, the stent is out, and she's been approved for soft foods by mouth!

I wanted to visit with some other families here at the hospital but needed to feed Audrey as soon as possible, so I took her to the Ronald McDonald Room to see what they had in the refrigerator. This very hungry caterpillar is getting her first snack in two weeks and begging for everything! Her selections at the hospital's Ronald McDonald Family Room included 3 bean salad, honey lemon yogurt, water and a cupcake! What a funny girl. I can't stop smiling...

 

On Our Way

Audrey is going to Primary Children's Hospital today to have her esophageal stent removed. While she is still under general anesthesia they will check to see if the leak is healed by putting barium liquid down her throat and watching on a live x-Ray screen. If the liquid contrast stays where it belongs instead of creeping outside the walls of the esophagus, they will remove the picc line in her arm and let us resume using her stomach for g-tube and as much food by mouth as she can tolerate. Our hope is also that having had the stent in for two weeks plus changing her antacid medication (starting tomorrow) will mean no more strictures for a long, long time.

I am heading to the hospital in a few minutes. Very hopeful that by the end of the day she will no longer be crying when she sees or smells food, but can join us instead. We've tried hard to keep her away from our meals but she is such a smart kid, it's been hard for everyone. (Thank heaven for Dora the Explorer!!) Favorite "sad but cute" moment of the past week: as she's reaching for food we said "I'm sorry sweetie, but the doctor says no." And she replied angrily in her little voice, "Doctor says yes!" We've been extra patient with our funny little miss contrary this week... her "no"s to virtually everything under the sun when she's tired or put out have been so much work to manage but SO FUNNY. We've even gotten "no blankie"s out of her! I think none of our kids have ever been the stereotypical two year old the way she has, and we feel so seasoned as parents now that it's easy for us to laugh at and take with just the right mix of salt and seriousness. As Lynn so wisely put it, "You don't suppose she thinks the world revolves around her, do you?"

Hiking the Y

 

Tonight is the annual "Lighting the Y" hike for BYU Homecoming. It has become a tradition in our family and we are looking forward to it very much. If anyone is interested in joining us we will be leaving at 5 p.m. and will be hiking at a toddler pace this year to let the little ones do as much as possible on their own. The rest of the crowd begins at 6pm and the lighting happens around 7:15ish. If we are lucky to arrive early enough our family will be one of the lucky ones turning a lightbulb at the assigned moment, so when you look up at the glowing mountain tonight I hope you think of us and especially Audrey up there climbing her own metaphorical mountain one dusty step at a time, and smile! The view from the top is worth it.

Justin is being a trooper and humoring me, I don't think he's as excited as I am (we're both out of shape and he knows we're going to end up carrying one or both toddlers at multiple points) but the weather is perfect, and taking it at our pace I think we'll be just fine. Last year at this time I was in Boston preparing for the family to come join me for the holidays. The last time we did this hike, two years ago, Audrey had just gotten home from five months in the NICU and was on continuous g tube feeds-- which ended up soaking her because her tube came undone at the start of the hike and I didn't figure it out, the poor thing. This time, ironically, she will need her picc line hooked up before the descent, so it's not too different except we're more experienced now, and no problems are allowed! I have to hand it to Justin, he's been doing the picc stuff this week, and getting that puppy set up is COMPLEX, there are seriously about forty steps to setting it up. He will set it all up before we go as much as possible and it will be easy to do the final connecting up on the mountain. I'm really excited for this. It's going to be a good night.

 

We had so much fun hiking the vigorous Y Mountain trail to set off BYU Homecoming week and helping light the mountain with many other BYU students and alumni. It turned out Audrey wouldn't walk at all so I carried her up almost the entire way, while Gideon was a trooper and walked up with Eden most of the way and she carried him part way. After the lighting, (three of us even got to screw in one of the giant light bulbs) Justin set up Audrey's picc line with TPN and we carried the babies down in the dark, this time I carried Gideon while Justin carried Audrey, and Eden (who had twisted her ankle) got the grand privilege of riding down in one of the coveted BYU golf carts. I enjoyed walking down with the EMT team (who were hiking with radios) which gave me a lot of comfort because I was really worried about Justin or I slipping on the loose gravel on the steep trail with the babes in arms, especially with the picc line. Thanks to their genial conversation, instead of spending the downward trek as an anxious wreck I got to hear about the HAM radio club from an electrical engineering student named Alan. We even made it down in time to partake of the donuts and cider. Fun times!

Told you the view would be worth it!

Yikes! Surprise Homecoming

Major change today: Dr Skarda talked Justin into Audrey coming home on an IV (picc line) antibiotics and TPN, with nothing allowed by mouth or G tube until at least next Friday when she'll go back in for stent removal. I should be so happy to have my family getting back together at home, and instead I'm a nervous wreck. A busy two year old in our busy household with an IV pole, and no snacks or drinks allowed, is not a recipe for success.... I was able to wrangle permission to have her on it only fourteen hours a day, because I only trust it strictly in her crib or in arms. Feeling like we kind of went from the frying pan to the fire, but grateful we'll be together as a family tonight.  

It definitely simplifies LDS General Conference weekend, which is always a special family time. And Birgitte if you're reading this, my hope is rekindled that I can come to your art show this evening. We should also hopefully still be able to do our traditional family hike to light the Y on the mountain for homecoming week next Tuesday night. Just trying to breathe right now. Our accident last weekend with the picc line, on top of her being so miserable and needy 24 hours a day really rattled me. Glad Justin will be here to help, hopefully all week, thanks to the government shutdown.

To my friend Rosa who freaked out on my behalf about her coming home with an IV pole I said, "This is what I get for leaving for a day, right? hahah!"  Crazy, I'm very stressed. I thought I was very clear when I talked to everyone, that she should never have an IV pole at home when she is out of bed. I think, I HOPE, we have a reasonable compromise. When I said fourteen hours maximum that I could have her on it safely (they initially wanted eighteen) I meant twelve in bed for the night and two for nap, except they came back and said ok, but it had to be all in one block. Sigh. Dr Skarda said if I feel like it just is not working out, I should call him and they can have her back in the hospital, no problem. Justin said she is tired but feeling herself, no pain meds today (wow!) so that helps my feelings a lot. 

Audrey brushing Daddy's hair. In one tiny corner of the universe, one household is very thankful for the government shutdown. He has been working six long days a week for months on end, and the government employee furlough could not have come at a better time as Audrey has needed a lot of individual parent help this past two weeks, and after a week in the hospital I was running on empty. Instead of feeling like I'm holding up the planet alone, this week I have instead been able to get over a cold, focus on the uplifting messages of LDS General Conference over the weekend, and give more attention to the other four children. In fact, Audrey's "Superman" has handled the whole IV enchilada. I actually fell asleep during the nurse teaching us how to do it at our house at 10:30pm the night she got home, it was so embarassing but I was absolutely exhausted. Seeing this kindly, over the coming week Justin did nearly every. Single. Treatment. If only we had a way for him to be home with us all the time and somehow still make a reliable living... when he goes back we will be sad. Thankful, but sad.

Switching Places

Tried to drive back to the hospital yesterday after a fitful night's rest but was still falling asleep at the wheel, so after doing some errands together, when I intended to head north, instead Justin sent me home again to sleep. It was not until he waved his magic guilt-releasing wand that I was able to sleep well for a few hours before helping the children with homework before bedtime. Mercifully Audrey's stent replacement went perfectly and she was comfortable and happy all day. We were together as a family this morning for breakfast, and Justin is excited to be on his way to go spend his day with her while I enjoy a quiet morning with Gideon, then volunteering at the school and a long anticipated lunch with friends. We plan to trade off again this evening.

Afternoon Update

This is the stent Dr Skarda took out of her esophagus today. He replaced it with an identical one that he wants to keep in nine days more.

What a morning!! Fun times with Audrey, a good change in our OR report time, rehearsing my challenging choir music in the hospital room with a borrowed keyboard, a hug from wonderful Amy, fantastic lunch of Thai food from the amazing Kira, big pow wow with Dr Skarda where we learned the leak is still there but her esophagus looks healthy and strong, no erosion, so back in goes the stent, this time the plan is to leave it on for the next nine days. When and if during that time we feel she's ready to come home to wait, she can come home, but I don't feel that she's ready just yet. Waiting, hoping, thankful for friends nearby and for those cheering us from afar. Justin is adjusting to domestic life by canning pears and harvesting honey. I plan to travel home this afternoon once Audrey is ok, attend rehearsal tool nine, sleep in my own bed if I'm too tired to drive the hour back up, and return in the morning. Maybe I can even take kids to school.

This is an x-Ray showing the liquid contrast going down her throat just now in the OR, showing that the leak has not yet healed. Looking at the place where the leak provides a new smaller side path for the stuff to go down the outside of her esophagus, I just can't resist the terrible pun that comes to mind: it took the road less traveled by, and that has made all the difference.

I feel like such a jerk driving south without my baby.... there's also that crazy Rip van Winkle effect-- summer has come and gone while I've been inside those walls. But I have to say our children's hospital has a lot of class, in tons of ways but specifically have to brag that not only is parking free but valet parking for patients is free, and none of the valet attendants accept tips. If you try to tip them they will suggest you make a donation to the hospital instead. 

Heading into the O.R.

So relieved that the powers that be were able to change our OR time so it makes it possible for me to be here for her and not miss a mandatory choir rehearsal tonight. Waiting to see the surgeon now. Audrey is practicing her newest mad skill of card lacing, and she's a bubble catching pro!

This is Jo, our cute child life specialist who has been blowing bubbles for Audrey in the OR waiting area.  Audrey was smiling a ton right before this picture was taken; I was hoping to catch it. She had been popping bubbles with her feet and hands and making me laugh. The doctors opened the door to come in right as I shot this picture so she is looking at them warily.

 

The Short Version of the Weekend's Events

Spent an hour writing a short novel of an Audrey update for yesterday and the night before, and my eyelids got too heavy to write more before it was finished, so it will just have to wait. Short version is, picc line accidentally came out Sunday night, back in the OR yesterday to replace it, then spent a wonderful evening in the music room, just now survived a third picc dressing change, and she now has laryngitis which has me scared about the stent eroding into things it shouldn't. Gagging has calmed, cough is better, nose is runny which seems weird. Plan is to check things in the OR tomorrow, probably take out the stent to look at the tissue and see how she's handling it in there, if the leak hasn't healed and tissue looks ok they might put it back in through Friday, he really wants it in a full seven days if she can handle it. She's kind of miserable today actually, despite wonderful care and sweet nurses. My mom heart is broken for her. But yesterday inspiration finally struck and I wrote pages and pages in the wee hours and again in the late afternoon, and two beautiful songs are taking shape. For that reason alone I am glad to have more time to work on them this week and hopefully reach a point of satisfaction to record them. It's an odd juxtaposition to have a mother's nightmare and a lifelong dream in the same place, but in a way I guess you could say we are truly living life to the extreme.