Doing Well

Audrey had a good first night after surgery.  She's in the the PICU until, probably tomorrow sometime.  She's got many wires and tubes going on right now, and they'll be removing different tubes as she progresses.  Right now they've taken her off of some of the meds that have kept her asleep, so she can wake up and be taken off of her breathing tube.  She is breathing on her own, but she needs to be fully awake before they take this out.

They haven't given any indication so far, as to when she'll be discharged.  She'll have to leave the PICU and be moved to a regular room on the cardiac floor, before they'll be looking in that direction.  So, we've got a few more days ahead, but that's OK because the care here is incredible.

Hopefully later on today, I'll have more to report, but for now it's mostly rest and knowing that she is recovering well.

Thank you all again for your prayers.  I'll close with a picture I snapped with my phone yesterday on the way to surgery.

To Him Be the Glory!

Audrey's out of surgery and in recovery.  We'll get to see her in about an hour in the PICU, where she will be for the next couple of days, then she'll be in a regular room for 2-3 days.  We'll post more later.

Thank you all for praying.  Please join us in lifting up His name in praise.

A Small Correction & A Sweet Moment

I think I may have given the wrong impression with my last post re: my frustration.  I'm mostly posting this for my benefit, so I feel better about people knowing what I meant earlier. I am afraid that I made Dr. Christian, in particular, seem harsh or uncooperative, and honestly the opposite is true.

We were actually quite comforted with Dr. Christian saying that it would be in the morning and saying it as emphatically as she did.  I guess, for three reasons, first she is the surgeon who will be doing the operation, so her opinion means more to us than all the others; second,  moving back to the scheduled time instead of moving it up, means that Dr. Christian's team will all be in place - no substitutions; and third, the fact that she said it with such authority, it comforted us to know that, "OK, this we can count on."

My frustration was with the back-and-forth nature of how things have been scheduled, not with the final decision to wait until morning.  I just wanted to make sure it was clear that our frustration was not directed at Dr. Christian and really at any one person or group.  

Now on to a really sweet moment. As I sit here and type this, Julie is on my left asleep on the sleeper sofa in the room, and Audrey is right next to me on my right in the hospital baby bed, at about eye level to where I'm sitting.  A couple of minutes ago, two nurses came in to start her fluids in prep for surgery, which upset her a little, so when they left I reached over and stroked her face until it looked like she went to sleep.

I turned back to type in this post and about a minute later, this little girl, who's had much more try cry about than smile about let out a "hehhh!" in a whisper.  I looked over and she was smiling and reaching for me.  So, of course, I put the laptop down and reached out and took her hand (I could tell she wanted to hold hands), and I put my other hand on the back of her head.  She smiled again and went back to sleep.  

This is exactly the type of child she is.  She's had a rough three days, and from her perspective has been tortured (I could tell story after story of how rough these tests have been on her), but even after all of that, this tender-hearted little girl, smiled at her dad, took his hand and stole his heart, again.

She's done this a few times with both of us, not just dad, but I wanted to share this one. We love this little girl.

Thank you all for your encouragement and your prayers.

Insert Your Preferred Frustrated Word Here

So a little while ago we found out there was a communication breakdown at the hospital. Audrey's surgeon didn't reschedule the surgery, and when word got to her that someone rescheduled it, she basically said, "Nope, the surgery is on for the morning, unless there is an emergency", which there isn't one.

I know many of you want to pray during the surgery. I am very sorry that they keep us changing. According to Dr. Christian, Audrey's surgeon, she is set for 8am tomorrow, and she has assured us that, short of an emergency, she has the final say.

What a emotional ride. I'm going to take a much needed nap. Thanks for your prayers.

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This Afternoon! Rescheduled Again

We've just been told that Audrey's tests have come back good, and they want to go ahead and move forward with surgery this afternoon, probably around 5pm (central time), maybe a little later, but in that area.  It is a 4-5 hour surgery, So she'll be moved to recovery in the pediatric cardiology icu sometime after 9 this evening, where she'll be for 2-3 days and then moved back to a patient room for a couple of days.

Early this morning her blood oxygen level dropped very low, emphasizing the need for this surgery.  So as soon as all of the tests came back OK, they went ahead and moved her up to today.

Please keep Audrey and the medical team in your prayers.  Thank you all for your prayers, love, and support.

Delayed, But Just a Day

Audrey's surgery has been moved from Thursday morning to Friday morning.  Today was a really rough day for Audrey, mostly because she got very little sleep last night and there were lots more tests today.  There was a hidden camera in the room and when it detected Audrey was asleep, it rang a bell outside alerting the hospital staff that it was time to come in and wake her for a new test or to go over things we'd already gone over several times.  Well, not really, but was beginning to feel that way.

Actually, the hospital staff has been wonderful, and we know the importance of and greatly appreciate every test and conversation, even if it did cause her to sleep less.  But, she was sleep deprived and napped every chance she could.  She's asleep now (11:00pm), and there are no scheduled tests until 5:00am. So tomorrow should be a better day.

Today a geneticist examined Audrey to determine if her heart condition, cleft lip, and the presence of "Cafe au lait" spots (small brown spots a little bigger than freckles) are related genetically.  He told us that there are a few syndromes that could relate a couple of these together or some that could explain them separately, and that they needed to run tests.  

One thing he made sure to point out is that having a genetic syndrome, isn't necessarily a sign of something bad, that it is much more of an explanation of how things are the way they are and are a great way to determine if there could be any complications that may arise from having these syndromes.  

Simply put, everything we're born with has a genetic explanation, so he is looking to see what those are and if it can help better prepare Audrey for her surgeries and life after those surgeries.  

This is where the delay comes in.  One of the complications that "could" arise from one of the "possible" genetic conditions could affect her heart surgery and recovery.  So, he and his team have asked for another day to rule this out.

I am so thankful that God has given us the ability to discover so much of His creation, and I am so thankful for people who choose to do this to help others.  We, of course, want Audrey's surgery as soon as possible, so she'll have full energy, stop turning blue in the fingers & lips, grow at a normal rate, and live a long and healthy life, but any delay that comes as the result of being cautious for her safety, we welcome completely.

Please pray for a restful night, and uneventful tomorrow, negative tests for these things that could complicate the surgery & recovery.  We are still overwhelmed, humbled and lifted by your prayers, and we know Audrey is in God's hands.

A Night In The ER

We got to Vanderbilt at 10:15 last night. The pediatric cardiology clinic had us come to the ER, since it was so late. They admitted Audrey so they could start her on IV fluids. Unfortunately they didn't have a room, so we spent the night in the ER exam room.

After all the checking in, seeing several different doctors, and going through numerous tests, Audrey was able go back to sleep about 4:15am until 7:30. Pretty unsettling for her, but given all this, we think she did great.

All the tests continue to come back good and the fever has stayed away without any medication. It's 9:30am now and Audrey is back asleep. At some point (hopefully soon) we'll start the pre-op work and the consultation with the surgeon. They've given no indication of delay, but they haven't told us we're definitely on for tomorrow. Hopefully we'll know before too long.

We assume they plan for her to spend tonight too, so we expect to be moved to a room at some point today as well. Thanks again for the prayers.
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