Life at Children's Healthcare of Atlanta - Egleston

{From Guest Writer - Amanda, aka Mom}

While we seem to be on a medical break, we've had a chance to catch back up with so many of you who have supported and cared for us as we endured the past month. We will never be able to express our gratitude for your kindness, concern and compassion, but have appreciated it so much. Thank you for your love and prayers!

Many of you have asked about our life at the hospital, and the back and forth of juggling Avery and Ryan back home. Here are some photos that I thought we'd share, for your viewing pleasure (in no specific chronological order). As you would imagine, days at the hospital were 'heavy', filled with decisions and anxiety, however you can see that Audrey's smile and attitude, along with so many wonderful family, friends, and hospital staff, helped us keep our spirits up!

A starter photo of Audrey's CICU 'room'. The CICU is one huge space with bed after bed lined up for 24 hour monitored medical care. This photo was taken not long after Audrey's cardiac arrest incident. Pretty amazing that we were allowed to hold her as if not much had gone on.:

Audrey's CICU space, with a favorite Nurse!:

Audrey heading out on a wagon ride, with her transportable heart monitor/telemetry in tow.:

A visit from Avery (big sister) and Ryan (big brother):

Playtime with Audrey's hospital buddy, her new baby doll:

Avery and Ryan working with a Child Life Specialist to understand what was happening with their sister, Audrey. Here they got to see and hold an ICD and learn how/where it would be placed inside Audrey. Avery is well versed on the device, what it does and why Audrey needs it. Ryan amazingly understands more than you'd guess for a 4 year old, but sometimes gets the letters ICD mixed up with the letters CICU!:

Visiting with Sally, Children's Healthcare's therapy dog:

Something exciting around every corner...Ryan was most excited to meet the Children's Healthcare Helicopter Flight Team:

An ICD compared to a pacemaker. Audrey has now upgraded from her old pacemaker to a shiny new ICD.:

A view of the glorious 'pod bedrooms' that we felt very fortunate to have during our nights in the CICU. Assignment of these room was by a lottery draw, because there were only 9 rooms and more parents needing to stay:

A visit from Grandmommy and Grandaddy!:

A visit to the Family Library, where we could borrow books and DVDs, and play with toys!:

Another spin around the hospital in the wagon:

Family Photo - The Koch Crew:

CICU bed with VIP Dora!:

A hospital menu favorite of Audrey's, strawberry ice cream:

Audrey's StepDown Unit Room,...amazingly coincidental that we've been assigned this room randomly 3 times in a row (!?). We like to think of it as our lucky room. This photo shows Audrey celebrating the 4th of July 2011 with her American Flag!:

Weekend craft class for siblings at the hospital.:

A fun visit from Aunt Linda and Uncle Gill!:

A visit from sweet friends Dawn and Sara!:

One of Audrey's favorite strolling stops, at the salt water fish tank.:

Feeling better while waiting days for her surgery.:

An escape from the room again!:

Not a fantastic photo of Audrey, but this was 2 days after her ICD surgery, while still in the CICU:

Tough girl, a couple days after ICD surgery.:

What a sweet picture...:

Audrey's Beads of Courage Necklace. Each of these beads was given by the hospital for a difficult procedure or monumental event thus far in her medical journey. Avery is in charge of putting the beads on for Audrey.:

A weekend visit from our good friends the Uhlmeyers. We spent time at a craft class, touring the family library, getting icees from the cafeteria, and playing outside in the hospital park.:

Another view of the Children's Healthcare of Atlanta Park. It is an amazing, serene place (except when our kids arrive!), filled with beautiful landscape, benches and fountains. Patients, parents and visitors can enjoy this park.:

In the CICU still with her baby, named Clarabelle (named by Avery).:

A visit from our awesome neighbor Dr. Fas. Audrey was having a tough day,...I think it was even lunchtime. Hopefully Norby didn't take it personally. :)

Another view of Audrey's StepDown Unit Room. Note the 'bed'/couch under the window where one of us slept each night:

A visit from sweet neighbor Katie! How fitting that Katie would be greeted by the hospital clowns! They were very interested in her balloon animal skills!:

The sweetest wall of pictures, drawn by so many precious neighborhood friends. Audrey LOVED them!:

As you may know, Atlanta's own Ryan Seacrest recently donated a live broadcast studio called The Voice to Children's Healthcare of Atlanta. It is located in the middle of the admissions lobby, and anyone can stop in to listen to the live artists who come by to play. I am sure it was more crowded when the American Idol guys or Justin Bieber and Selena Gomez made their appearances!

Feeling Good!:

Checking Out! Time to head home! Thank you Children's Healthcare for the lifesaving care and kind hospitality!:

Article describing Denervation Surgery

We were emailed this Mayo published article today that details the denervation procedure that Audrey will undergo in August. Pages 5 and 6 are the pages covering the exact denervation procedure Audrey will have. The writeup was done back in 2009 so some of the patient numbers mentioned have increased in the two years since. The two doctors shown there, Ackerman and Moir, will also be Audrey's doctors there at Mayo. Dr. Ackerman is the cardiologist that we have had multiple extensive phone conversations with and is definitely considered one of the leaders in the LQTS field. Dr. Moir is the surgeon that Dr. Ackerman consistently works with and will be performing Audrey's surgery. Although we really hate having to put Audrey through another surgery, we feel really confident that we are going to the right place to have it done.

http://www.mayoclinic.org/mcitems/mc5200-mc5299/mc5234-1209.pdf

-Mark

Post-op

Audrey has been home now almost a week and things have gotten better each day. Her incisions have been healing up great and don't appear to bother her much. She has had some trouble sleeping at night but we're not really sure if its due to any discomfort or her sleep schedule being so out of whack during the weeks in the hospital when she was woken constantly. Each night she has slept a little better and longer. She has been very happy and active during the day and has loved being back at home and we have all loved having her back and smiling again.

We had her post-op followup appointments today with both the surgeon and also with cardiology. They took some xrays and her surgeon thought everything looked good and was healing up as expected. They removed the remaining stitches in the spots where her tubes were and also the strips over her incisions and said that there is really nothing special we need to do for her surgery. We can pick her up normally and feel confident that all is ok.

The EP's did an ekg and also downloaded all of her data from the ICD to see how her heartrate is doing and has been the past two weeks. We have this constant anxiety about the possibility of her getting so worked up and causing arrythmias that would induce a shock but were thrilled to see that despite her loud crying we did not see anything at all to worry about. There was definitely nothing close to any shocks and her heart rate looked steady and solid. It was a big relief for us to see that everything was as expected and our biggest hope is that she'll have that defibrillator as an insurance policy and never have to use it.

We have confirmed our visit to Mayo on the week of August 22 and are now working out some of the specifics with our doctors there. I'm not sure that we'll ever feel 100% about the decision but we both know that the potential benefits are great enough for Audrey that we need to move forward.

Thank you to everyone for the love and support that you have given Audrey and our family.

- Mark

On the way home

After one last EKG this morning, Audrey and Amanda are on their way home. We'll all be thrilled to be back home once again, despite the additional concern we'll have to learn to live with from here on out.

Attaching a somewhat fuzzy picture I took on Tuesday evening when Audrey and I were burning some time by walking around the hospital and parked in front of one of her favorite stops, the saltwater fish tank.

- Mark

Done

It looks like Thursday is the day that Audrey will be returning back home. Two and a half weeks after what we thought was going to be a routine 1 year checkup visit to Egleston she'll be back at her home. Cardiothoracic, the group who did the surgery, was ready to let us go home today based on her recovery from the surgery alone but Electrophysiology wanted one more day to watch her rhythms and make certain that things remain stable with no concerns. We figure we can do one more day at this point to ensure everything looks good considering we want to be comfortable enough to carry on at home without the constant care and monitoring that she has been under. We'll have to return in about a week for a followup visit.

Ryan couldn't even grasp it when I asked him if he could believe that the whole family was going to be back home together again tomorrow. He responded "but only for one day right?".

We have still been putting off lining up the dates and specifics around going up to Mayo for the denervation. We have both just been completely spent getting through this one that its hard to mentally start lining up the next one already and we still go back and forth constantly on whether its the right thing to do also. I think in the past couple days we have had some conversations with multiple people once again that have pushed us towards feeling secure in the decision to more forward on lining that up. So now we'll have to get that rolling for sometime in August.

Will let you know tomorrow if she busts out of there

- Mark

Movin on up

In the past couple of days Audrey has weaned completely off of the IV medications and is eating normally again and has done great. This morning she has transitioned back out of the CICU and over to step down once again where she gets her own room. We're not yet sure how long the stay in step down will be but its definitely a relief to get out of the CICU. For the third time we are back in the exact same step down room again.

- Mark

Sunday 7/10

It was a slow weekend here at Egleston for Audrey. Since Friday's post the focus was mainly on getting her recovered and stable after the surgery where she was once again eating and drinking normally and keeping it all down so we could be certain that her medicine that she takes orally is getting fully absorbed. Although she started drinking fluids yesterday, today was the first day she really started fully eating normally again. So we're finally getting somewhere. The plan is, now that she is eating/drinking again, to wean her off of the IV drips that were given in the meantime to cover for the oral medicines, and slowly alter her pacer settings back down to more normal minimum heartrates. They have already backed down her minmum hr from 140 to 110 in three different times over the weekend and we'll continue down that path. Once Audrey is on only the oral medicine again and the pacer settings are where they need to be, then she'll just need to be arrythmia free for 24 hours before she can get out of the CICU and over to her own room in stepdown once again, so we're looking at 2-3 more days here. It's such a slow process but Amanda and I definitely want to feel confident about things before heading out of the warm and cozy confidence of her being fully monitored.

On the bright side, today Audrey really regained a lot of her personality once again. She was talking a ton, smiling, able to sit up and play with toys and really seemed almost back to herself again. Yesterday when I held her in my lap she just seemed very stiff and out of it, my guess was because she might have still been in some pain. Today she really was more fun and active, which was really refreshing since we hadnt seen that since Wednesday, prior to the Thursday morning surgery. I'm guessing the next couple days in CICU will be tougher to keep her somewhat calm in her crib as she regains all of her energy.

This week will be challenging as I also try to balance all of this with doing work again after a couple of weeks of solely family focus. We'll see if its possible to do both.

The outpouring of support and offers of help during this time has been awesome and so appreciated. Even if we haven't taken you up on it, please know that we are grateful.

-Mark