As many of you know, we had Audrey's 1 year cardiology checkup scheduled on Monday following a great weekend where we celebrated her 1 year old birthday with a fun party. During that checkup she got pretty agitated and was crying quite a bit and then surprisingly threw up quite a bit. Despite that, the EP's were able to acquire all of the data needed from her pacer and saw that all of her rhythms from the past month continued to look good just as her first 9 months of life. We got her cleaned up and wrapped up our appointment and were on the way out of Egleston when I told Amanda I wanted to quickly use the restroom. When I came back out Amanda exclaimed to me that something was definitely wrong and was holding Audrey up out of her stroller. Audrey had clinched up and then passed out and Amanda ran back over to the Egleston desk and said she needed some help and Audrey continued to throw up and gag herself. We returned back up to the pacer clinic where they immediately hooked her back up for an ekg and noticed that she was having some runs of tachycardia that had not occured previously. While watching the monitor the Dr got startled and quickly said "Audrey! Audrey!" and kind of grabbed her to shake her out of a run of VT. They concluded that she needed to head over to the CICU for at least a day. When they were getting her settled into her bed there, they asked us to leave the room while they put her line in. When we returned the Dr told us how her heart had gone into complete fibrillation where she had no pulse requiring that they do compressions and provide shocks using the defibrilator a couple of times. The doctors termed that incident a "recessitated sudden death incident" that now puts her in quite a higher overall risk category. Extremely scary moment but at the same time very thankful we happened to already be there in the building where she could be cared for.
Fast forward to the email below that I sent on Tuesday 6/29 recapping that days status...
A quick update on Audrey. They have been monitoring her closely to watch for any more arrythmias after yesterdays events while they investigate also for a possible trigger to the event. She did have some runs of tachycardia this morning around 6 or 7 and then was pretty clear until about 5 when she had some additional runs. These were short bouts that she would come out of without any assistance but not good and not anything we have seen her first year. Although the decision has not been fully made yet, the conversation is starting up about the probability that we'll have to have surgery to put in an ICD rather than her current pacemaker to protect her against future incidents such as yesterdays. The harsh reality is that it was what they called a "sudden death incident" and would have likely been fatal in a lot of scenarios. The ICD alone will only protect her against those incidents and will also serve as a pacer as she has now but there also has to be some steps taken to try and avoid the fibrillation that requires those shocks. So along with adjusting the medications we have been just starting to discuss an additional procedure called cardiac denervation that will ablate some of the nerves connecting to the heart that trigger some of these events. That is not certain but discussions with some of the nations leading doctors on those procedures are being explored. We have always figured that the ICD would be probable someday but we were hoping to wait as long as possible but if Audrey absolutely needs that at this point then we'll definitely do it. We should know more in the next day or two as they continue to monitor her closely.
She is pretty stable now and doing fine and the biggest struggle is trying to get her to relax and rest as she is so active and wanting to move around. One of us is staying here with her each night and we both are here with her during the day as well and it comforts her a lot to be held and played with. The doctors and nurses are great with her as well and she is in awesome care and a great facility. We are so fortunate to live here near CHOA.
I'll give Wednesdays update in the next post.
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