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
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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
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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