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

Friday 7/8 Update

Although today has not gone quite as smooth as we would have liked for the day after surgery, Audrey is doing great right now and recovering from the surgery itself pretty well. She is laying there in and out of sleep, watching some cartoons on the tv, and she keeps kicking her right leg constantly.

She now has an ICD (implantable cardioverter defibrillator ) which will protect her if she has an cardiac event in the future as she had last Monday, but the ICD does not offer anything to prevent such events from happening that she did not already have with her pacemaker. The goal now is to try to ensure that she does not have any more events and does not have to use the ICD as anything more than a pacer.

We went into today hoping that her rhythms would return to a stable sinus rhythm once again and we would be out of CICU on Saturday and over in stepdown for a couple of days. This morning Audrey had multiple bouts of short runs of tachycardia that would go away after a few seconds. Since she is still a little sedated and not yet drinking or eating anything, the doctors suspect that she is not absorbing the oral medicines that were given so they started up the IV form of the anti-arythmic drug along with continuing the oral meds as well and set her pacing settings a little differently and at a much higher rate. Once stable and confident that she is absorbing the oral medicine then we'll back off of the IV medication and slow back down the pacer rate while watching how she responds. This means we are going to be in the CICU for at least a few more days before going over to step-down.

Our hope is that tomorrow Audrey will possibly get her surgery drain tubes removed, her incisions continue to heal ok, and her heart rate continues to remain stable as she comes back down after all of the jarring of the surgery.

Audrey definitely appreciated all of the well wishes.

- Mark

ICD procedure complete

We just spoke with the surgeon and everything went well. There were no complications and they were able to put it in the same place where the pacer was in her abdomen. They had to test that it would work by inducing her heart to trigger the defib and that worked as expected so little Audrey is a stud and has successfully powered through once again. They are moving her over to CICU now and getting her setup there so we'll get to see her again in about an hour.

- Mark
Sent via BlackBerry by AT&T

ICD surgery underway...

Audrey was unable to eat anything after midnight but could have clear liquids until 5:00 AM so she was unable to eat or drink anything this morning when she woke. The nurses brought Audrey some pre-op calming drugs right before 7:00 which did wonders for her. She was extremely sleepy and almost out after that. We were extremely thankful because we were dreading that moment of the nurses carrying her into the OR while she was terrified and crying as she has been most times nurses or doctors come into the room for treatments. That part went great and she is now in the operating room and underway. Will post an update later when I get one.

- Mark
Sent via BlackBerry by AT&T

Wednesday Update

We have gone through the majority of the pre-op steps today (xrays, bloodwork, etc) and are on the schedule for first thing on Thursday morning. Audrey will start the anesthesia right around 7:30 am and they estimate the entire procedure to take right around 3 hours. Following that Audrey will be taken back to the CICU once again for the next couple of days for close monitoring.

During my discussions with the multiple doctors today about tomorrow's details I found myself somewhat last-minute questioning whether its definitely the right decision or not, but deep-down we both know that she needs the protection and we have consulted with many other doctors who agree with the recommendation.

We had a long phone meeting last night with Dr. Ackerman at the Mayo Clinic who is THE Long QT doctor in the US and his clinic has by far performed the most of the denervation procedures. That ball is now rolling and planning a trip up to Minnesota for that consultation will be our next steps once Audrey has fully recovered from the ICD procedure.

I will post some updates tomorrow with the status of Audrey's surgery.

Thank you to everyone for the generous amount of thoughts, offers of support, meals, presents, and prayers. We appreciate it all very much.

- Mark

Tuesday July 5th

Another day in the books at Egleston, but not without some excitement of course. At night when Audrey is sleeping her heart rate naturally slows down. The past couple of nights Amanda and I had noticed it slipping below the 80 mark which struck us both as odd considering her pacer is set so that it will ensure that is the low point and will kick in to ensure that. This is concerning because Audrey's type 3 of Long QT is known to be triggered during low heart rates and sleeping. We have come to ignore a lot of the readings on the monitors because many are false readings so we didn't read too much into it. Today when Amanda brought it up to the doctors during rounds they interrogated the pacer and found that both the leads running from the pacer to her heart are fractured and not operating correctly. This occurred in the past few days here at the hospital somehow so they went ahead and turned off the pacing and we are relying on medicine alone until surgery on Thursday when they will replace those leads along with the ICD. This definitely led to our anxiety levels ratcheting up slightly further today. We should find out tomorrow what time on Thursday Audrey is scheduled for.

Yesterday Avery and Ryan came down to visit with the intentions of going up to the 6th floor and watching the July 4th fireworks together from the window but with the heavy rain delaying things we decided to bag that idea and head home instead after hanging out for a little while.

- Mark

Sunday July 3rd

This picture was taken on Wednesday in the CICU, two days after Audrey's episodes occurred.






This picture was taken in Audrey's step-down room when the kids visited.











Audrey is officially scheduled for ICD implantation surgery on Thursday 7/7. We don't know what time of the day and the date could still be shifted if any emergency surgerys bump us out or if someone ahead of us drops off of the schedule. The same doctor that implanted Audrey's pacemaker, Dr. Kanter, will do the surgery once again and will remove her pacemaker and replace it with the new ICD. They will examine the existing leads and reuse them for pacing as long as they are in good shape and they will have to also put in an additional lead from the ICD to her heart as well. If everything goes well then they estimate that the recovery will take 3-4 days following the surgery where they will also be monitoring her rhythms closely and adjusting the settings to ensure that it is pacing correctly.

We're still in discussions around the denervation procedure but we've established that we are not going to have that done here at CHOA. They want to build up that experience and ability here but we are unwilling to have Audrey be one of their first. We are working with a doctor at the Mayo Clinic in MN that is one of the leaders in the Electrophysiology field and especially Long QT and has extensive experience with this procedure. We believe that when we take that step then we will travel to Minnesota to have it done.

Audrey is really doing pretty well now. Her rhythm has been very stable and she's as happy and active as you can be when you're stuck in a hospital. We walk her all over the hospital and outside as much as possible. It is crazy how quickly perspective and patience levels can change when you are here. Not only do the thoughts around Audrey's situation and how it could have been tragic make us really cherish time with the kids and serve as a reminder that we must have more patience with them during those times when they are just being wild kids. Being here you also see all of the other children that are battling so many other awful conditions as well and its just such a reminder to not ever take the health and happiness of your children for granted. It is definitely a reality check on priorities.

- Mark

Friday Update

Audrey enjoyed her first full day of being in step down rather than the CICU. With her telemetry monitoring she is fully mobile and able to crawl around and be active again. The nurses setup a nice mat with a blanket on it for a play area with her toys. She is her old self again as far as her activity level, mood, and eating again. She does get pretty fired up with each new person that comes into the room to take her vitals or an ekg. We're not sure if it is due to a new stranger complex at her age or just being sick and tired of another machine being wheeled in to poke and prod some more. I definitely couldn't blame her if its the latter.

Avery, Ryan, Grandmommy, and Granddaddy came down to visit Audrey today. She loved seeing their smiling faces and we took all three kids for a ride in the wagon outside and around the hospital. We ran into the hospital assistant golden retriever dog which the kids got to pet as well as the helicopter transport pilots were getting some coffee and took some time to talk to the kids and give them some pins. Avery and Ryan also got to meet with the child life specialist who sat with them in the playroom and did crafts and explained to them a little about Audrey's condition using some fun props and tools. It was a great experience for them all.

We also feel like we made some great progress today on our research into the suggested treatments for Audrey. Our great friends at the SADS foundation instantly connected us with one of the Long QT experts at the Mayo clinic and we are now working closely with him in conjunction with our CHOA doctors on a plan. After today we really feel like we have consulted with some of the most expert and renowned doctors worldwide in the Long QT field and are much more at peace with the proposed treatment options. Although there are quite a few specifics to hash out still, we currently are planning for Audrey to have surgery sometime next week to replace her pacer with an ICD to protect her in case of cardiac events such as the one she had Monday. We are so thankful to have so many resources such as the SADS foundation, friends in the medical field, and Doctors willing to spend their time to help us determine the best path for Audrey.

- Mark