Sunday, January 24, 2016

GJ update

So sorry I never updated after the last post. Waverly did well that day with her procedure. They ended up not completely putting her to sleep, so we were able to go right home after the procedure. And that's where the trouble started. 

When I went to start her feed at home, the J tube was really hard to flush. It even wouldn't flush part of the time. I started her food and it kept alarming that there was no flow out (aka the tube was clogged). Not good. I called the doctor's office several times until I finally was told it sounded like it wasn't working properly. We later found out the doctor forgot to flush it after placing it and we didn't know any better to try a feed there before we left. 

So, we went to the doctor first thing Monday morning to get it checked out. He placed a guide wire through it and got resistance about half way down, so he sent us for an X-ray with contrast through the tube and we saw an irregularity in the tube where it narrowed in the middle. 

They didn't have an extra button in her size, so we had to wait until the next week when they got another one in to replace it. In the meantime, we just used the g tube portion to feed her since that part was working. 

So, she had the same procedure done last Wednesday, 12 days after the original one, to replace it. Thankfully, this one seems to be working well as of now!

Enjoy some pictures of her during both procedures. 

Thursday, January 7, 2016

GJ tube

Tomorrow Waverly goes in the hospital to receive a GJ tube in place of her g tube. We are doing this due to her lungs. Every time she's sick, her right lung is much worse than her left. The doctors think it could be due to reflux and aspiration. So we had a couple options. One was to do a Nissen fundoplication to prevent her being able to reflux. But that surgery is difficult and there was some concern with her feeding schedule and being on bipap at night, as well as the possible need for a tracheotomy in the future. 

So we instead opted for the GJ tube. This should help her if reflux and aspiration is the cause of her lung damage because her formula will go straight into her jejunum (intestine), and won't be in the stomach for it to reflux and cause aspiration. 

They plan to keep her overnight for observation because of the anesthesia used. 

The procedure is scheduled for tomorrow at 10:00am. We'd appreciate prayers. Specifically for the procedure itself, for her to handle the sedation well, for her health as she's battling another UTI and our oldest just came down with a fever, and for protection from germs while there. Thank you! 


Today has been a terrible, no good, very bad day. Nothing majorly bad. Just a lot of frustrating things. A rearranged schedule. A squabble with my husband. Not feeling well myself. Fighting with doctors and labs and pharmacies over people who aren't doing their jobs just to get my child the treatments she needs. She's got yet another UTI. I actually made an involved dinner tonight because we had food that needed to be cooked. But now it's just me and kids eating it. (In that case we would have had quick and easy dinner!) Hubby is running late getting home from work which leaves me alone for dinner time and bedtime. 

We are preparing tomorrow for Waverly to go to the hospital to change her g tube for a GJ tube. (More on that in a separate post.)  Even with that, they called and made the time earlier which means we have to leave really early. No good. 

And then the kicker: my oldest comes home from school with a sore throat and fever. And I'm undone. 

I can't handle one.more.thing.

While we are eating dinner, I turned on Pandora. And this popped up:

"Hallelujah, hallelujah
Whatever's in front of me
Help me to sing hallelujah
Hallelujah, hallelujah,
Whatever's in front of me
I'll choose to sing hallelujah."

Heart check. 

Yes, Lord, I hear You loud and clear. I have the choice. And I can choose to sing hallelujah, no matter what is in front of me. 

In the midst of a bad day, of unexpected sickness, of trials and frustrations. On the eve of a procedure and a hospital stay. 

And for me, in the future, when we face the unfathomable reality of losing her, I will have a choice. I will choose to sing hallelujah. It may be through tears. It may be but a whisper. I might only even be able to mouth the words. But Lord, help me to sing hallelujah. 

Tuesday, December 22, 2015

Winter Solstice

We just endured the longest night of the year. Winter solstice. How appropriate for it to come at this time. 

Christmas isn't always all peace and joy. For many it is a dark and lonely time. Very like that first Christmas. God had been silent for hundreds of years (how's that for a long night??). 

The world was a dark place (do you feel the same of our world today?). Jesus came in a messy and painful way (giving birth isn't all magical-it is messy and painful and hard). It wasn't a perfect, "silent" night. All was not calm and bright. It was dark and lonely and hard. 

Can you relate? Yet, in the midst of such a long and dismal darkness, one tiny glimmer of light can be so bright. Did they see it? Do you see it?

I know so many are enduring hard things. You are lonely, anxious, sick, scared, broken-hearted. It has been a long night. But I'm praying that as you wake this morning, you see the glimmer of light. 

When Jesus came, He didn't make everything perfect and right just yet. He made a way. He brought redemption. And although that redemption is not fully known in our world yet, it is promised to us, just like He was promised to us before His birth. He is coming again! (Oh please come quickly!) This night will not last forever. The Day will come. Take heart. And be ready. Hope and Rescue. 

Thursday, December 10, 2015

Back in PICU

Well, after waking up this morning at 4:30 and vomiting blood and running a high fever, we took her to the ER and she's been admitted to the PICU with possible pneumonia. She had a bunch of seizures this morning but then sort of stabilized once her fever came down and perked up a bit. She's starting to feel bad again, and wouldn't settle down this afternoon until I picked her up to hold her (last picture). Please pray for her recovery and for our strength. 

Wednesday, December 9, 2015



This sweet girl is sick with a respiratory bug today. She started having lots of secretions last night and ended up aspirating. She's been on bipap all day today and running s low grade fever. Please pray that we are able to clear her lungs and prevent a hospitalization. She's also been dealing with recurrent UTIs that we can't seem to get rid of. Pray for healing and strength. 

Wednesday, December 2, 2015


When your child is grinding her teeth like she does incessantly every single night, don't get cocky and think you can put your fingers in her mouth and not pay attention and escape unharmed...