Amanda has been reminding me daily that I have been slacking on updating the blog. As was the case before, when we got back home and things start cruising along normally (as much as normal can be for Audrey) I just kind of forgot to update.
Overall, the whole procedure was more positive than we could have ever imagined. We were dreading the entire trip leading up to it. Audrey did so well during our stay at the hospital that our best case time-frame actually held true. They released her from the hospital on Thursday but they wanted her to remain local for another day just in case we noticed anything abnormal at all. So Amanda and Audrey settled into the Ronald McDonald house for that night and then were able to cruise around Rochester a little bit. It all felt a little surreal that Audrey had her surgery on Tuesday and then two days later was out of the hospital and really showing no effects at all. She was as active as ever and really happy.
One of the possible side effects that is possible with the denervation procedure is a slight risk of Horners syndrome, a drooping eyelid as well as a constricted pupil, due to affecting the nerves that control this. Initially we could see a little bit of this in her eyelids, along with the puffiness from the surgery and meds, but we feel very fortunate that her eye has really recovered back to normal now at this point. As I said, we are grateful that everything went so well.
We were so thrilled that everyone was back at home on Friday. Based on past history, we never expected to be home so quickly. We were so thankful and relieved to have our family all back together at home again. Audrey attended our neighborhood block party on Saturday and had a normal weekend like any other playing with her brother and sister. She's such a tough little girl and is truly a reminder to enjoy everyday.
-mk
Monday, August 29, 2011
Wednesday, August 24, 2011
Wednesday Recap
Audrey had an awesome day here at Mayo. She was definitely back to her spirited personality and was fully playing and eating again. It started out a little rough because she couldnt really fall back asleep after her 4am nurse visit so she and Amanda were cruising around the hospital at the crack of dawn. Audrey's sleep was all out of whack at that point so she ended up taking a few sporadic naps throughout the day.
Both Dr. Ackerman and Dr. Moir came by and were very happy with how she is recovering and doing overall. We are still fully on schedule to get out of here in the next couple of days and get back home. Amanda and I are still a little hesitant to fully count on that happening but she's looking great so far so we'll see.
Today Audrey did not want to just sit in her room between naps so we took quite a few walks and she had a little playdate with the twin boys in their room. She's been able to shed some of her cables and lines and has the telemetry monitoring now so we're able to ditch the room and cruise around.
- mk
Tuesday Night Update
It was a long exhausting day today but just wanted to make a quick post to say that all is going well. Audrey is stable and resting in her ICU room. We have started weening her off of the Lidocaine drop so by mid-day Wednesday she should be back to only the two medications she takes on a regular basis at home. She started eating some light foods and clear liquids again late this afternoon so we are hoping she'll regain even more appetite tomorrow morning. She has been remained tired and pretty grumpy throughout the day and cries very loud everytime a nurse or doctor attempts to check anything on her but she seemed to get a little better when she got some juice and cheerios in her this evening.
Dr. Ackerman came by and thought she looked great and was doing excellent. We are hesitant to get our hopes up because we know how quickly the situation can change but he estimates that she'll be able to return home on Friday. We'll see.
While here we have been fortunate to meet a nice family of two 1 year old twin boys that both have the exact same gene mutation as Audrey. Crazy to think that of the documented roughly 20 cases worldwide of this specific case, there are 3 of them in the Rochester ICU right now. It's been really interesting to learn about each other's experiences thus far and I'm sure we'll continue to be resources for each other in the future.
- Mk
Dr. Ackerman came by and thought she looked great and was doing excellent. We are hesitant to get our hopes up because we know how quickly the situation can change but he estimates that she'll be able to return home on Friday. We'll see.
While here we have been fortunate to meet a nice family of two 1 year old twin boys that both have the exact same gene mutation as Audrey. Crazy to think that of the documented roughly 20 cases worldwide of this specific case, there are 3 of them in the Rochester ICU right now. It's been really interesting to learn about each other's experiences thus far and I'm sure we'll continue to be resources for each other in the future.
- Mk
Tuesday, August 23, 2011
Surgery complete
-mk
Sent via BlackBerry by AT&T
Denervation underway...
This picture was taken this morning when we got to the hospital. She was happy and cheery still at this point.
We are finally underway after a long morning of pre-op, which is so much tougher when we are unable to give Audrey any bottle or food. She obviously knows the drill at this point and became extremely worked up and scared when they started putting the leads and other connections onto her. She was getting so worked up that we were more than a little worried about her heartrate and the possibility of it going into torsades again, similiar to a month ago at CHOA. At this point her ICD is adjusted so that the defibrillator is turned off but it is still pacing if needed. They allowed Amanda to go back to the OR with her until they got the anesthesia in and she fell asleep. At this point we are in the waiting room and waiting for updates.
The below picture is of a monitor in the waiting room that updates with the status. Audrey is 'patient 1074116' and is currently in the OR. Kinda feels like being at the airport and keeping our eye on flight 1074116 on the monitors.
Will post an update when we get one.
-mk
Monday, August 22, 2011
WFMC
First off, I want to thank everyone for the very thoughtful and caring calls and emails. We really appreciate all the of the love, support, and help that you all have provided during this crazy time for the Koch family.
Today was a power packed day and Audrey handled it all like a champ. We started the day with an xray appointment and then an electrocardiogram appointment. Both of those went really smooth as Mayo really has their processes down pat and move patients through quickly. At that point it was about 10am and Audrey was tired so she took a quick nap for a little while before the next appointment. We then met with the cardiologist Dr. Ackerman at 12:45. We previously have had a couple of calls on the phone with him and he was familiar with Audrey's case but we walked through all of Audrey's details with him once again. He is definitely one of the world leaders in the study of Long QT so wanted to soak up as much of his insight as possible. He was extremely caring and down-to-earth and willing to talk to us as long as we wanted. It was very interesting to hear his full perspective on the path we should take for Audrey's care and compare notes to what we have discussed with our Atlanta doctors also. One of the huge gains from this trip is that we are now a patient of Ackerman's as well and he knows our Atlanta doctors really well. They have collaborated on Audrey's details in the past and following this procedure there will be more of that collaboration to ensure we consider all options.
One thing we hear, in different ways from different doctors, is that her specific type is one of the scariest and most unpredictable. Ackerman explained that on a scale of 1-10, with 10 being worst, her case is about a 9. Our Atlanta doctor said in similar terms that if we were to line up all of his cardiac patients, that Audrey would be in his top one or two most concerning ones. Its always hard for us to believe this is the case with how well her first year went overall but that speaks to the unpredictability of her specific gene mutation. For these reasons we have to be proactive and aggressive in her treatment, which is why we are here now for this procedure.
After going way over on our appointment time, we were late for our next appointment with the surgeon Dr Moir, but I felt a little better about tomorrows surgery. I asked him to tell us some of the success stories for her type, which was definitely good to hear once again. He explained to us the positive that for her rare case, it was one of the earlier Long QT type 3 mutations identified so there has been more knowledge gained around it than some of the others. There are about 10-20 documented cases worldwide of her mutation but enough to gain insight into the details to know some additional medicinal treatment options in the future.
We walked through the plan for tomorrow with both Ackerman and then again with the surgeon and are comfortable with the plan. The one thing that we didnt realize was that they will have to turn off her ICD during the procedure to make certain that there are no shocks caused by the procedure. They will be starting her on a lidocaine drip during the procedure as a precaution though so that should help balance that out. We have to get her there at 6:45 AM to begin anesthesia and the procedure will begin around 8 or 9 AM and will last only around 30-40 minutes total. We'll get to then see her again right around 10:30 or 11 AM. We're really looking forward to just getting this thing done and moving forward. We have researched and discussed and thought and then done it all again so many times that we are now ready to finally get it going and move forward.
I'll post an update on Tuesday about her surgery success.
- Mk
Today was a power packed day and Audrey handled it all like a champ. We started the day with an xray appointment and then an electrocardiogram appointment. Both of those went really smooth as Mayo really has their processes down pat and move patients through quickly. At that point it was about 10am and Audrey was tired so she took a quick nap for a little while before the next appointment. We then met with the cardiologist Dr. Ackerman at 12:45. We previously have had a couple of calls on the phone with him and he was familiar with Audrey's case but we walked through all of Audrey's details with him once again. He is definitely one of the world leaders in the study of Long QT so wanted to soak up as much of his insight as possible. He was extremely caring and down-to-earth and willing to talk to us as long as we wanted. It was very interesting to hear his full perspective on the path we should take for Audrey's care and compare notes to what we have discussed with our Atlanta doctors also. One of the huge gains from this trip is that we are now a patient of Ackerman's as well and he knows our Atlanta doctors really well. They have collaborated on Audrey's details in the past and following this procedure there will be more of that collaboration to ensure we consider all options.
One thing we hear, in different ways from different doctors, is that her specific type is one of the scariest and most unpredictable. Ackerman explained that on a scale of 1-10, with 10 being worst, her case is about a 9. Our Atlanta doctor said in similar terms that if we were to line up all of his cardiac patients, that Audrey would be in his top one or two most concerning ones. Its always hard for us to believe this is the case with how well her first year went overall but that speaks to the unpredictability of her specific gene mutation. For these reasons we have to be proactive and aggressive in her treatment, which is why we are here now for this procedure.
After going way over on our appointment time, we were late for our next appointment with the surgeon Dr Moir, but I felt a little better about tomorrows surgery. I asked him to tell us some of the success stories for her type, which was definitely good to hear once again. He explained to us the positive that for her rare case, it was one of the earlier Long QT type 3 mutations identified so there has been more knowledge gained around it than some of the others. There are about 10-20 documented cases worldwide of her mutation but enough to gain insight into the details to know some additional medicinal treatment options in the future.
We walked through the plan for tomorrow with both Ackerman and then again with the surgeon and are comfortable with the plan. The one thing that we didnt realize was that they will have to turn off her ICD during the procedure to make certain that there are no shocks caused by the procedure. They will be starting her on a lidocaine drip during the procedure as a precaution though so that should help balance that out. We have to get her there at 6:45 AM to begin anesthesia and the procedure will begin around 8 or 9 AM and will last only around 30-40 minutes total. We'll get to then see her again right around 10:30 or 11 AM. We're really looking forward to just getting this thing done and moving forward. We have researched and discussed and thought and then done it all again so many times that we are now ready to finally get it going and move forward.
I'll post an update on Tuesday about her surgery success.
- Mk
Sunday, August 21, 2011
The time has finally arrived for Audrey's next procedure. We have struggled with the surgery as time has passed since her ICD implantation. We had an appointment at Childreans Healthcare of Atl on Thursday where they downloaded all of her stats from the ICD since the last appointment and she has been doing awesome. There have been no arythmias or worrisome rhythms. I asked our EP to tell me on a 1-10 scale how he thought she was doing and he said "9.9". The fact that she was doing so well begged the question that we had been struggling with. I asked him if he still feels as strongly that the denervation procedure should be performed on Audrey and he explained to us that he still felt the same. The decision to move forward is not as much reactive to what occurred last month but more of an attempt to prevent those arythmias in the future.
After our day of travel we are now here in Rochester, Minnesota. We have a full day of consultation on Monday including ECG, Xrays, and meetings with multiple doctors. We are scheduled for the procedure on Tuesday although not sure what exact time yet. We should find that out on Monday.
- mk
Friday, July 29, 2011
Life at Children's Healthcare of Atlanta - Egleston
{From Guest Writer - Amanda, aka Mom}
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!:
Sunday, July 24, 2011
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
http://www.mayoclinic.org/mcitems/mc5200-mc5299/mc5234-1209.pdf
-Mark
Wednesday, July 20, 2011
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
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
Thursday, July 14, 2011
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
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
Wednesday, July 13, 2011
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
Tuesday, July 12, 2011
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
- Mark
Sunday, July 10, 2011
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
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, July 8, 2011
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
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
Thursday, July 7, 2011
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, July 6, 2011
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
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 5, 2011
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 3, 2011
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, July 1, 2011
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
Thursday, June 30, 2011
Thursday Update
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
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
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.
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