Pretty uneventful day here at Egleston. On one hand that is a good thing as Audrey's rhythms stayed pretty stable and she took all of her medications well. Her wide and bright eyes were back today and she was in a great mood and very lively all day.
On the other hand, I dont feel like we made very much headway toward our decision on a plan. Our EP spoke with a couple of other doctors, one in Italy who is one of the biggest proponents of the cardiac denervation and one in NY who is the EP for a family that we have kept in close contact with as their 4 year old son has the same condition and has followed our same path. Both gave some interesting input that we are taking into consideration. We were hoping to have another meeting outside of the CICU in one of their offices to have further discussion with a couple of the EP's but didnt get the chance. Almost every minute of the day and every conversation Amanda and I have, we are talking through our options and feelings around the procedures. It's so very intense and consuming for me right now as we attempt to make the right decisions for Audrey. As morbid and harsh as it sounds, the impact of these decisions could truly be life or death for our sweet little girl. We are trying to make certain that we talk to as many resources as possible and challenge our doctors on the options both presented to us and not presented. It is such a fine line as we want to ensure we do not offend our closest doctors, that we respect and value greatly, but also make sure we do our homework as Audrey's parents to explore the pros and cons of every option on procedures, locations, surgeons, etc.
We did get moved to the step down unit at the very end of the day so Audrey and I are sitting in our own room now with a couch/bed in the room. She was able to get some of her lines removed and has telemetry for her heartrate monitoring which allows us to take her out of the room and all over Egleston now, all while her heartrate is still being monitored. She is now able to crawl around in our room, sit in a high chair for meals, and play in a playroom across the hall. Crazy coincidence, it ended up being the same exact room that we had a year ago after Audrey was born. This was a huge step for Audrey as it was becoming painful to keep her held down in the CICU once she was her self again and had her energy back. Avery and Ryan are dying to come back down to the hospital to see Audrey, and visit the almighty gift shop.
Again, we sincerely thank everyone for all of your well wishes, prayers, and assistance.
- Mark
Thursday, June 30, 2011
Wednesday, June 29, 2011
Wednesday Status
Audrey had a relatively stable overnight on Tuesday evening and then again on Wednesday. The last runs of arythmias occurred on Tuesday around 5pm although she has still had some occasional premature beats in the past day. She has transitioned once again back to the same two medications she has been taking at home although in a slightly higher dosage now. She has started once again drinking milk and we are attempting to get her to eat some solid foods such as cereals. We were waiting the results of her bloodwork that was sent off to Utah to analyze the level of Mexilitine in her system because one possible explanation could have been attributed to a switch in compounding pharmacies just two weeks prior. If her levels were very low then that could have given us a good cause to help explain Mondays events. The results were returned and her Mexilitine levels were good so that eliminates that possibility and we really have no true leads on the cause, outside of the fact that she has Long QT type 3 and it will always be a real possibility.
At this point our EP's are strongly recommending that we replace Audrey's pacemaker with an ICD (implantable cardioverter defibrillator) that would provide insurance against events such as Monday's by providing a shock to break the rhythm pattern. It would also operate as a pacemaker for the lower end pacing to ensure that her rhythm does not drop too low where LQTS type 3 triggers occur. At this point we are pretty comfortable with that surgery and the need for this device. The EP's are also recommending a cardiac denervation procedure that would ablate the nerves running to the heart that contribute to the triggering of these dangerous arrythmias. Although they are recommending that procedure there is quite a bit of research and discussion to take place before we are truly comfortable with this one. The ICD alone would provide some protection but we would not have done anything to try and prevent the incident requiring a shock. Our doctors and us are currently reaching out to some other leading doctors to discuss these recommendations.
If Audrey remains stable and continues to take her medicine correctly then the plan is to move us from the main CICU room into the step down unit where we are still monitored but would have our own room and a little more freedom. I believe Audrey would remain there for monitoring until we have a solid plan.
Thank you to everyone for the support, prayers, and well wishes. We truly appreciate it and feel very loved and supported.
I'll continue to update here rather than sending out emails and forgetting to send to someone or another.
-Mark
At this point our EP's are strongly recommending that we replace Audrey's pacemaker with an ICD (implantable cardioverter defibrillator) that would provide insurance against events such as Monday's by providing a shock to break the rhythm pattern. It would also operate as a pacemaker for the lower end pacing to ensure that her rhythm does not drop too low where LQTS type 3 triggers occur. At this point we are pretty comfortable with that surgery and the need for this device. The EP's are also recommending a cardiac denervation procedure that would ablate the nerves running to the heart that contribute to the triggering of these dangerous arrythmias. Although they are recommending that procedure there is quite a bit of research and discussion to take place before we are truly comfortable with this one. The ICD alone would provide some protection but we would not have done anything to try and prevent the incident requiring a shock. Our doctors and us are currently reaching out to some other leading doctors to discuss these recommendations.
If Audrey remains stable and continues to take her medicine correctly then the plan is to move us from the main CICU room into the step down unit where we are still monitored but would have our own room and a little more freedom. I believe Audrey would remain there for monitoring until we have a solid plan.
Thank you to everyone for the support, prayers, and well wishes. We truly appreciate it and feel very loved and supported.
I'll continue to update here rather than sending out emails and forgetting to send to someone or another.
-Mark
Back in the CICU...
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.
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.
Tuesday, November 30, 2010
Monday, November 22, 2010
Great Great News
It was a HUGE day today for us at Audrey's EP appointment! It had been 3 months since our last appointment and I have been practically counting the days until today's appointment because the doctor mentioned last time that we would look at transitioning from medicines every 6 hours to every 8 hours. Upon walking in, the doctor asked us "whats new and exciting?" to which I replied that "this appointment is exciting!" because of the possibility of the change. The midnight and 6am daily medicine intervals along with the two older siblings that seem to also come in our room for some reason nightly is exhausting. He confirmed that we can make that change starting today so I am extremely relieved that we can try to start sleeping once again. Rather than 12-6-12-6 medicine intervals we'll now switch over to three times a day, most likely around the 7-3-11 times.
Along with the great medicine news, they downloaded all of the data from her pacemaker from the past few months of history. Everything looked really good and there was no sign of any tachycardia rhythms. The pacer had kicked in about 5% of the time and they were very very pleased with how she was doing. The medicine and pacemaker combo is really working well for Audrey. They did not change any of the pacemaker settings and we will be going back in 3 months for our next checkup.
The documentary crew came in with the cameras and got some video of Audrey's appointment to go with the video that we took a few weeks ago. Audrey put on a good show and smiled and laughed most of the time. We're not yet sure when that video and documentation will all be compiled and available but we'll make sure to post it when it is.
While there, one of our favorite cardiologists from this whole journey poked his head in to see Audrey. He was the first one we were lucky to see on the day when we were at the perinatologist and were sent immediately over to the cardiologists office. He was the one that discussed with us the initial possibilities and then was the Cardiologist that was there in the room when Audrey was born. We were always very impressed by not only his knowledge and demeanor but the way that he reached out to some doctors well beyond the practice for additional opinions and input on our case. He made a point of going out of his way to come in for some of the weekend ultrasounds while Amanda was stuck in the hospital and seemed to truly take a personal interest in helping us. Seeing him again today made Amanda tear up to think back through it all.
We are grateful that Audrey is doing as well as she is at this point. She is now around 14-15 lbs and seems huge compared to the 5lb she was when we brought her home back in June. She is smiling quite a bit and her big sister and brother love trying to entertain her and make her laugh.
Thank you again to all of friends and family that have helped us throughout.
- Mark
Along with the great medicine news, they downloaded all of the data from her pacemaker from the past few months of history. Everything looked really good and there was no sign of any tachycardia rhythms. The pacer had kicked in about 5% of the time and they were very very pleased with how she was doing. The medicine and pacemaker combo is really working well for Audrey. They did not change any of the pacemaker settings and we will be going back in 3 months for our next checkup.
The documentary crew came in with the cameras and got some video of Audrey's appointment to go with the video that we took a few weeks ago. Audrey put on a good show and smiled and laughed most of the time. We're not yet sure when that video and documentation will all be compiled and available but we'll make sure to post it when it is.
While there, one of our favorite cardiologists from this whole journey poked his head in to see Audrey. He was the first one we were lucky to see on the day when we were at the perinatologist and were sent immediately over to the cardiologists office. He was the one that discussed with us the initial possibilities and then was the Cardiologist that was there in the room when Audrey was born. We were always very impressed by not only his knowledge and demeanor but the way that he reached out to some doctors well beyond the practice for additional opinions and input on our case. He made a point of going out of his way to come in for some of the weekend ultrasounds while Amanda was stuck in the hospital and seemed to truly take a personal interest in helping us. Seeing him again today made Amanda tear up to think back through it all.
We are grateful that Audrey is doing as well as she is at this point. She is now around 14-15 lbs and seems huge compared to the 5lb she was when we brought her home back in June. She is smiling quite a bit and her big sister and brother love trying to entertain her and make her laugh.
Thank you again to all of friends and family that have helped us throughout.
- Mark
Tuesday, October 19, 2010
October Update
It's been a long long while since we have posted an update out here so I'm not sure that anyone is still reading. As I've mentioned in past posts, that is truly because Audrey is doing so well and there really isn't many updates about her condition.
Audrey is now roughly 4 and a half months old and is growing and progressing great. We are always a little confused on whether to consider her 18 weeks old or 13 weeks old due to being 5 weeks early when we gauge where she stands on her development. She has really gotten so much more stable physically, is interacting much more, and is smiling a lot. She is still on the same two medications every 6 hours so sleep is still somewhat dictated by that pattern. She doesn't have the opportunity to truly attempt to sleep through the night because I have to wake her at midnight for meds. Last night we had a malfunction in the routine and I didn't wake up at midnight and Audrey slept right through until her 6am medication time so we know she could do it if able. I'm hoping more than anything that we'll get to transition to 8 hour medication intervals at next months Cardiology appointment.
Amanda took Audrey to the Pediatrician for her 4 month appointment yesterday and it was nothing but good news. She is up to 12 lb and 14 oz and roughly 30 percentile for weight and 35th percentile for height. They were shocked at the jump, especially in height, from her last visit. Her pediatrician commented that her gross motor skills were excellent and she is exactly where a normal 4 month old should be on all fronts. The Pediatrician commented that "we just don't realize what an amazing job the doctors did" to get Audrey to where she is today and how absolutely amazing it is. Despite the shots Audrey had to get and was cranky about all day, it was awesome to get the news that we generally would take for granted.
In past posts I have mentioned the write-up on our crazy story that Children's Healthcare of Atlanta did to use for some advertising/fundraising efforts. They said that the story went over really well and was inspiring when presented in one of their events. A few weeks ago they asked if we would be willing to do some video interviews about the journey also and we definitely said yes we'd love to help however possible. Amanda, Audrey and myself went down to Egleston last week and recorded some video discussions. They also recorded some video with the doctors and nurses we worked with most closely. Not sure how exactly they'll use it all but she mentioned that they are redesigning their website and it is going to be featured on there once that it is complete.
Overall, Audrey is doing excellent. With two older siblings she definitely gets to attend quite a few different events and always goes along for the ride without fussing at all. We feel very fortunate.
- Mark
I know, not the best pic but the only recent one I have on my phone, and kind of funny. I think the flash surprised her.
Audrey is now roughly 4 and a half months old and is growing and progressing great. We are always a little confused on whether to consider her 18 weeks old or 13 weeks old due to being 5 weeks early when we gauge where she stands on her development. She has really gotten so much more stable physically, is interacting much more, and is smiling a lot. She is still on the same two medications every 6 hours so sleep is still somewhat dictated by that pattern. She doesn't have the opportunity to truly attempt to sleep through the night because I have to wake her at midnight for meds. Last night we had a malfunction in the routine and I didn't wake up at midnight and Audrey slept right through until her 6am medication time so we know she could do it if able. I'm hoping more than anything that we'll get to transition to 8 hour medication intervals at next months Cardiology appointment.
Amanda took Audrey to the Pediatrician for her 4 month appointment yesterday and it was nothing but good news. She is up to 12 lb and 14 oz and roughly 30 percentile for weight and 35th percentile for height. They were shocked at the jump, especially in height, from her last visit. Her pediatrician commented that her gross motor skills were excellent and she is exactly where a normal 4 month old should be on all fronts. The Pediatrician commented that "we just don't realize what an amazing job the doctors did" to get Audrey to where she is today and how absolutely amazing it is. Despite the shots Audrey had to get and was cranky about all day, it was awesome to get the news that we generally would take for granted.
In past posts I have mentioned the write-up on our crazy story that Children's Healthcare of Atlanta did to use for some advertising/fundraising efforts. They said that the story went over really well and was inspiring when presented in one of their events. A few weeks ago they asked if we would be willing to do some video interviews about the journey also and we definitely said yes we'd love to help however possible. Amanda, Audrey and myself went down to Egleston last week and recorded some video discussions. They also recorded some video with the doctors and nurses we worked with most closely. Not sure how exactly they'll use it all but she mentioned that they are redesigning their website and it is going to be featured on there once that it is complete.
Overall, Audrey is doing excellent. With two older siblings she definitely gets to attend quite a few different events and always goes along for the ride without fussing at all. We feel very fortunate.
- Mark
I know, not the best pic but the only recent one I have on my phone, and kind of funny. I think the flash surprised her.
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